Do you have any of these or other unusual symptoms?

@jimjimcherie

Жыл бұрын

Several, but I haven't been diagnosed with MS 🗿

@EvenSoItIsWell

Жыл бұрын

@@jimjimcherie keep advocating for yourself. Ask for second opinions and referrals. I saw 5 doctors in the year I was diagnosed. Autoimmune diseases can be so challenging to diagnose. I hope you get answers soon!

@jimjimcherie

Жыл бұрын

@@EvenSoItIsWell thank you so much! There are some symptoms I've had since childhood but no one was ever able go give me answers for, the one that came to mind so clearly was that tightness you mentioned in another video on your calf and thigh, I've had that since I was a child, as well as an itch that appears every year, and no one ever knew why, and now with symptoms that have been popping up more in the past few years it just keeps pointing me towards MS, in the last 2 years I've been to the ER more times than in my entire life. I actually have an appointment with a neurosurgeon this Thursday because last week I ended up in the ER _again_ , this time because of a lumbar pain so debilitating I couldn't even walk, i couldn't do anything but lay in bed. I just want to find answers soon.

@EvenSoItIsWell

Жыл бұрын

@@jimjimcherie so glad you are seeing a neurosurgeon. I hope they have answers for you or can point you in the right direction. Keep me posted.

@jimjimcherie

Жыл бұрын

@@EvenSoItIsWell thank you so much! I definitely will, your videos are so informative, and help a lot.

My very first vertigo from ms before being diagnosed was rolling vertigo. Everything rolled down wards like when the old tvs werent set properly. I lost my hearing then eyesight bladder bowel respiratory action. Then i woke up to bright colours in hospital. I had kaledescopic vision. Ive had it ever since. Classed as legal blindness. But hey i wake up to a rainbow everyday. Im not complaining. Cladrabine has kept me stable for 7 years. Ive completed diplomas bachelors and a masters in medicine with it. The brain fog n fatigues a kicker but i wouldnt change anything for the world.

@EvenSoItIsWell

3 ай бұрын

Wow! Those are definitely some unusual and interesting symbols. Good on you for seeking the rainbow and keeping on with life! Congrats on the degrees.

Fibromyalgia has these symptoms as well. I have the the symptoms you describe but I have been told I have fibromyalgia.

@EvenSoItIsWell

Жыл бұрын

Thanks for watching.Yes! There are many conditions that can have similar symptoms. They were wondering about fibromyalgia with me too when they were trying to diagnose me.

@margaretcurrie4093

Жыл бұрын

Same here.. Numbness in feet, also tingling.. And tingling In Arms and hands. And other problems..

@ferrisbean

Жыл бұрын

Same with hypothyroid

@EvenSoItIsWell

Жыл бұрын

@@ferrisbean yep! Another one with similar symptoms.

@Julie-si3hi

Жыл бұрын

Yes same here,but my Dr sent me for a ct scan to rule Ms out.

I have had optic neuritis, but fortunately for me, it went away. I have been diagnosed with dysfonia (loud voice disorder). I have really worked on this because it bothered several people. Muscle weakness causes me pain, but then it goes away again. Once I was at Vons, and thought there was an earthquake, but it turned out to be me. I have lost my sense of taste a few times, and with food tasting metallic, but my sense of smell was perfectly fine. Sometimes I get headaches. I also suffer from vertigo, and dizzy spells. I have many challenges, off and on, at different times, and am very tired.

@EvenSoItIsWell

Жыл бұрын

Thanks for watching Deborah. Wow, you definitely have more than your fare share of the more unique symptoms. I hope they are manageable.

@EvenSoItIsWell

5 ай бұрын

@Tapping916 thanks for watching. I hope you can find answers and treatment.

I am 20 years old. I have been diagnosed with trigeminal neuralgia. Prior to that, i got sharp shooting pain in my right hand that comes and goes, the doctor treated it with medication but couldn’t find a reason. I have vertigo everytime I change my position which causes me to fall sometimes. Every now and then I get a burning sensation in one of foot which also comes and goes. I get air hunger in summers which makes me feel like I will pass out soon. My blood tests are normal. I went to the doctors and they said I had hyperrflexia and referred me to the specialist who said it is all because of anxiety. I also get random emotional outbursts. I have had anxiety since I was a kid and I know enough to tell this isn’t it. I do think I have MS, but no one will listen

@lovevideos93

29 күн бұрын

@Mao-fi9qr I have many issues of which you describe yourself as having and I agree.i am starting to think too many are just now given this diagnosis when tests, labs, and doctors idk are all connected. I fall a lot too and I have vertigo as well, but my main reason of falling is I'm legally blind due to cataracts. Keep asking questions and start keeping a journal on your symptoms. This might help.

I am so glad I came across this video today. Thank you, thank you, thank you! I've been having several of these symptoms and they are progressing rapidly. I have a new PCP and thankfully she's taking me seriously. Finally someone is willing to schedule the tests needed to confirm a diagnosis. She's also making referrals to other doctors and disciplines to help with my symptoms. Finding your channel has made me feel like I'm not crazy. I'm not a hypochondriac after all. I guess if all the tests come out negative I might have to rethink that statement. For now, you've given me some peace of mind and reminded me of things to discuss with my doctor. Again, I thank you.

@EvenSoItIsWell

Жыл бұрын

Thanks for watching Debra! Welcome to the community. No, you are not crazy. 😉 Autoimmune diseases can be very tricky to diagnose and can take time. Keep advocating for yourself and keep us posted!

This video was so timely as I have an assessment at an MS centre this week. I often forget lots of intermittent symptoms..... Until they happen again. Thanks for the reminder 😅😨

@EvenSoItIsWell

Жыл бұрын

Thanks for watching. I was the same! I tended to forget about the intermittent symptoms too. It is helpful to keep a log and bring a list. Good luck with your appointment. Let me know how it goes!

Thank you for sharing these as they are not typically discussed!🧡

@EvenSoItIsWell

Жыл бұрын

Thanks for watching Dr. Gretchen!

Great video! I always learn so much from your content! Your work reaches millions of people, thanks from Rio! 😍

@EvenSoItIsWell

Жыл бұрын

Thanks for watching Jane!

Thank you for sharing this information

@EvenSoItIsWell

2 ай бұрын

Thanks for watching Heather!

It's like an itching inside the body not outside on the outside of the skin

@EvenSoItIsWell

Жыл бұрын

Idiopathic itching is so uncomfortable! I am sorry that is happening. Keep trying with your doctors so you can get to the bottom of it.

❤ I Appreciate you and I Appreciate the information For this sad illness .I am Praying for you And your Precious Family and others that is going through this I have just been Diagnosed with MS in April of this year so I need all of the help I can get! Thanks Krissy Lynn , 48 year's old Lawrenceburg TN

@EvenSoItIsWell

10 ай бұрын

Hi Krissy Lynn! Thanks for watching. Please be gentle with yourself. The first year or two can be times of adjustment where you may feel ALL the emotions. Try to take exquisite care of yourself.

This was VERY helpful. THANK YOU!!!

@EvenSoItIsWell

Ай бұрын

Thanks for watching Dobby! Cool KZread name!

I love your sweetness! You were made to make life easier for us. I'm not sure what you did before making these videos for us, but I am very grateful to you for them!❤

@EvenSoItIsWell

Жыл бұрын

Oh Stacey you made my morning! Thanks so much. I was, and still am, a virtual assistant.

I am so happy I found your channel. I am having many symptoms and do not feel well. Having terrible flare up. Hoping my doctor can get me in sooner for a visit. I am really enjoying you and your videos. Thank you so much for sharing your experiences and knowledge. 😊

@melissagiacalone8976

Жыл бұрын

I have not been diagnosed... but the voice is in the back of my head.

@EvenSoItIsWell

Жыл бұрын

@@melissagiacalone8976 thanks for watching. I hope you find some answers soon. Keep in mind it could be something else. There are many things that can cause symptoms that are similar. Keep me posted on how it goes!

Thank you so much for this video! I'm waiting for my lumbal puncture (which went very well) result, although we are pretty sure with my doctor that I have MS, based on my MRI scans and symptoms. It all started with numbness in my hand years ago. I was treated as if I had carpal tunnel syndrome for a long time, and almost even had surgery. Luckily I met a great diagnostician, who became instantly suspicious when I told her about all the things I've noticed and that all the other doctors have neglected. At this point, I experienced dysesthetic itching, clonus, and occasional limb weakness when I went jogging. Now I have a great neurologist, who is really optimistic about the future and possible treatment options. I wish you and everyone all the best in fighting this, and thanks for creating such great content! 🙂

@EvenSoItIsWell

10 ай бұрын

Thanks so much for watching. I hope you get conclusive answers soon.

@e.elsibea1518

8 ай бұрын

Thank you, Victoria. After forty years of JRA and twenty years of feeling something else was going on, I finally have a clear description of symptoms I can now verbally express when I see the next specialist. I pray it's nothing that can't be treated.You give amazing clarity to descriptions of symptoms which I believe will be very helpful in describing what I've been feeling and discerning from the chronic RA for all these years.

@EvenSoItIsWell

8 ай бұрын

@@e.elsibea1518 thanks so much for watching. I hope you get answers soon.

Ty 4 postn awareness! I was diagnosed with MS in 1998 with RRMS... it's ruff & I appreciluv ur Sharing.. be well 🙏🏽❤💛💚🥰

@EvenSoItIsWell

4 ай бұрын

Thanks for watching!!

@artemisnectar7

4 ай бұрын

@@EvenSoItIsWell ur welcome my friend! Have an amazing Spring 🙏🏽💃🏽🌻⚘🌼🌷🌸🏵

You're very knowledgeable and great at explaining everything. I was diagnosed with M.S 6 years ago. You must be an M.S Doctor. I'm glad i found your channel. 🙂💖

@EvenSoItIsWell

2 ай бұрын

Thanks for watching Tara! Nope, not a doctor. I am a person with MS that loves to learn, read research, and share it with others. 🙂

So when trying to explain MS with some chronic relief, I tell friends that if I ever get arrested and they taze me, I will say “Is that all you got? I can beat that!” ⚡️⚡️

@EvenSoItIsWell

Жыл бұрын

Ha!! That is awesome. We definitely have a different perspective because of the symptoms we’ve experienced don’t we?

Wow! Ticking alllll the boxes. 😳😬🤣 I don't know why I find this funny. I don't really. It's just wow! I feel like I FINALLY have my answers!! I fear NOTHING!! Thank God, right?! 😁🤭😘

Wow I think this is what I have! I have been referred to a Physiatrist. I am scared. Your video & authentic kindness has eased my fear. Thank you! ❤

@EvenSoItIsWell

Жыл бұрын

Hi Callie! Thanks for watching. It is ok to be scared and completely normal! You are looking for a diagnosis that you don’t really want. 😉 please be gentle with yourself and know that no matter what the outcome, there are things you can do to help yourself live well with chronic illness. Please let me know how it goes!

@debbiedebbie9473

Жыл бұрын

Watch this video too. Just in case it might be part of what's going on. DIAGNOSING AND TREATING VITAMIN B-12 DEFICIENCY. that title exactly. Make sure to watch to the end and take good notes. ❤️❤️❤️

@janetphillips2875

6 ай бұрын

​@@debbiedebbie9473you most likely dont need the psychiatrist

I just found your channel and I am so excited to listen to every single one!!!! You are wonderful for making these!! I am still in the throes of figuring out "what is wrong with me".... I said MS right from the onset but we'll see. Doctors simply DO NOT want to listen to me. I've been doing all my own research and going to them with lists and ideas.

@EvenSoItIsWell

Жыл бұрын

Thanks for watching! Keep advocating for yourself. Diagnosing autoimmune disease can be difficult and take time Keep me posted!

@sbrooke210

Жыл бұрын

@@EvenSoItIsWell so the far the best they can do is "fibromyalgia" because they are not willing to dig in

@EvenSoItIsWell

Жыл бұрын

Dang, I'm sorry about that. If they can't help with the symptoms try asking for referrals - "who should I see next to help me with this?" ""What type of doctor should I see next?"

@mikelanier5617

Жыл бұрын

Change neurologists until they answer your questions and take your own research seriously. I had 9 neurologists over 10 years until I found one who actually listened and tried several treatments which I had researched at length. After repeating numerous tests and treatments I had over the years, he did another spinal tap and determined my protein levels were higher than he had ever recorded on a patient. This factor combined with my extensive symptoms led to a diagnosis of Secondary Progressive MS, Trigeminal Neuralgia, Chronic Inflammatory Demylenating Polyneuropathy and a few others, lol. No treatments have helped and I live in Florida now for the legal medical cannabis as suggested by my former neurologist. It helps with the inflammation, pain, involuntary muscle movement, shakes, dysphagia, balance, vision and gives me an appetite to eat, plus many more positive attributes. I wear an ice cooling vest and can now enjoy my kayak for short trips and feel more human again 😊 Good luck and keep trying till you find a doctor who cares ! ❤

@sbrooke210

Жыл бұрын

@@mikelanier5617 thank you so much! I've never seen a neurologist, I can barely even get in to see a rheumatologist!!

Ugh. I really hope I get in for my mri soon. Waiting on a call from the hospital for 3 months now. I have every single one of the thinned you listed plus more. 😵‍💫😵‍💫😵‍💫

@EvenSoItIsWell

Жыл бұрын

I am sorry you have to wait. Waiting is so difficult.

I have optic neurites but am not too blind to say this lady is mighty pretty.

@EvenSoItIsWell

2 күн бұрын

@@nopeyadayadayada1248 thanks for watching. Sorry about the optic neuritis.

Our family is new to this so thankyou for sharing this information

@EvenSoItIsWell

Жыл бұрын

Thanks for watching Howard. How is everyone doing? New diagnosis’ can be very scary. It takes time to adjust.

@user-vm3mg6eb8n

10 ай бұрын

@@EvenSoItIsWell My daughter keeps going from worse to worser she has terrible tremors has any one got any recommendations to help with this she is on kersempter CBD oil valium restless legs medication Vader blockers but nothing seems to help has anyone had any luck with other medications

Thank you

@EvenSoItIsWell

Жыл бұрын

Thanks for watching!

I found with the burning itch that using warm water alleviated it. I didn't need drugs and it eventually cleared up. I think there are a lot of things you can do without having to rely on drugs

@EvenSoItIsWell

Жыл бұрын

Such a good tip for the itch! You are so right, there are so many things we can do to help with symptoms before turning to pharmaceuticals.

@wendychan6679

Жыл бұрын

@@EvenSoItIsWell I was quite desperate when I found the solution. The stinging sensation was so severe that I thought I may have been bitten by a spider (there are a few nasty ones where I lived) but I found none. I tried the warm water which was above luke warm but not hot. I found it neutralised the stinging. After a while this stinging returned but after a couple more applications it was gone.

@jessicanielsen6134

6 ай бұрын

Please tell me more about the burning itch. I experience a pain/itchiness 9/10 in my hand/joints occasionally and unprovoked, and I'm pretty stoic, but it's prevalent enough that I have to stop work and put something cold upon it. My blood vessel locally appears inflamed (raised/tight-- when I look at and palpate it, I think of a rope pulled taut), and hours later, I'll often find a dark bruise. This occurs with no provocation

@wendychan6679

6 ай бұрын

My burning itch was a symptom of MS. It came on suddenly and I thought I was bitten by a spider. From that point it would go then return. It got worse to the point where the pain was almost unbearable. At that point I tried soaking my hand (that was the location of the itch) in warm water. It made it feel better but it would return. I just kept doing that when I needed to and it eventually went away. At that time I was relapse remitting MS so issues like this will largely come and go. Try the warm water and see how it goes. You don't need it hot but have it at a level where it is just below hot but should be comfortable. Don't have it at a level where you burn yourself. It did work for me and this pain didn't come back.@@jessicanielsen6134

@wendychan6679

4 ай бұрын

It is true that it is temporary but for me I kept doing it and eventually the itch went away. I am talking about an itch that was so painful it was almost unbearable. It did work for me and it was easy to do with no side effects (from drugs). I needed to be patient though. It is worth doing.@cataniamommaitalia87

Trigeminal neuralgia is very difficult to manage on your own. I have been struggling with this for over 20 years. I also have MS. Because I can’t take muscle relaxers for spasms (they shut my bladder down, another sign of Ms). I have learned that benedryl works well with combination of gabapentin and seizure medication. Also Hylands leg cramp medicine which is sold over the counter help for spasticity. Good luck MS warriors

@EvenSoItIsWell

4 ай бұрын

Thanks so much for watching and the tips! So glad you have found a combination that works for the TN. I have heard it can be excruciating.

@designdestinyonline

4 ай бұрын

You’re quite welcome!! Thank you for your channel and spreading great content for the MS world! It’s a true need and greatly received.

@teenjules2309

3 ай бұрын

I have trigeminal and occipital and get botox every 3 months plus for muscle spasms in face neck shoulders

@designdestinyonline

3 ай бұрын

@@teenjules2309 my dr mentioned Botox in the past but he was concerned it could shut my bladder down. However I’m going to be talking to him about Botox again

@taradecoste4788

2 ай бұрын

Hi M.S Warrior. I have M.S and Dr told me today I have trigeminal neuralgia. He's starting with gabapentin so I guess will see how it helps. I'm glad you posted 🙂

I was diagnosed with multiple sclerosis in March spent a month in a half in the hospital.

@EvenSoItIsWell

Жыл бұрын

Welcome! I am sorry about the long hospitalization. How are feeling now?

I’ve had random hot flashes on my left foot. From the heel or ankle up to my lower leg and it stops as quick as it starts. Have also had weird ice pick sensations on the side of my head, which have now stopped. Doc sending me for head MRI. I was shocked that was his first inclination. He mentioned MS.

@EvenSoItIsWell

7 ай бұрын

Ouchy. Those both sound uncomfortable. Both could be MS related… or not. Glad your doctor is being proactive. Keep me posted!

Can these symptoms be from physical damage due to bad horse, car, and work accidents? Everything thing mentioned is on my list and more. Was in and out of wheelchairs for years, broke multiple vertebrae and incomplete spine damage. Didn't wear a helmet so head injury also. My neurologist died about 20 years ago and I haven't been able to get another referral from my primary care doctor. Primary care doctor doesn't listen basically put me on palliative care and one medication that I take once a day sometimes twice. I use a dog to help me out. I'm active a garden, camp, fish, and drive working in the woods and fields in Vermont taking video and photos much of the time. But I've also spent months where just taking care of basic needs is more than my body can handle. Getting worse with age, I'm 66. Thanks for the great video. I've subscribed! ❤

@EvenSoItIsWell

Жыл бұрын

Thanks for watching Patricia! I can’t offer medical advice but I would encourage you to dig a bit deeper with your doctors. Maybe make a list of the symptoms that have crept up over the years and ask for some additional testing to be done. Keep me posted.

@patriciacooper1308

Жыл бұрын

@@EvenSoItIsWell thank you ❤️. I'm going to find a new primary care doctor and a neurologist.

@patriciacooper1308

10 ай бұрын

@@EvenSoItIsWell it was a piece of wood which worked it's way out last month from the base of my spine. Possibly there for years. Much of the nerve pain is gone, even able to walk a lot more. ❤️ still spastic but I've had that since birth.

@EvenSoItIsWell

10 ай бұрын

@@patriciacooper1308 wow!! I am so glad you are doing better! I hope you continue to improve!

@patriciacooper1308

10 ай бұрын

@@EvenSoItIsWell thank you ❤️

Wow I don’t even know where to go 🤷🏻‍♀️ that electric zap you describe? In hands arms mostly. Blurry vision, for couple hours, then clear, brain fog, currently trying to keep up with 20,30,40 somethings, and expecting to perform at the same level! Let down by GPS I’m frightened to go back, like they think I’m a hypochondriac ? My experience has been horrendous 🙈😳🤷🏻‍♀️xxx

@EvenSoItIsWell

Жыл бұрын

Oh no! Can you go to another GP or request a second opinion?

I have had most all of these symptoms. Yet I was diagnosed with NMO because I had optical neuritis. I had 2 years of steroid and rituxan treatments. I have had all the signs of MS. My lesions were I'm my thoracic spine. I don't take anything now but have intermittent symptoms. Heat bothers me the most. I have incontinence every day. I'm tired all of the time. My legs feel heavy according to the weather. I have memory issues. I have strange sensations randomly. I am thankful I am no longer in,a wheelchair. The symptoms are random and annoying at times.

@EvenSoItIsWell

Жыл бұрын

NMO can seem a lot like MS! I am glad you are walking again. Are you thinking you have MS and not NMO?

@victoriaboster1177

Жыл бұрын

NMO presents a completely different serum profile that excludes MS and MRI results would be different

Optic neuritis is not just temporary... I have permanent blindness in my left eye from my very first relapse sadly. good overview, a lot to look forward to :/

@EvenSoItIsWell

Жыл бұрын

Dang, I am sorry it is permanent. Thanks for watching.

@__Wanderer

Жыл бұрын

@Leena Wexler that's great to hear, sadly a year later after ON my left eye is still legally blind and everything I do see is incredibly fuzzy / black and white. If someone is standing a couple of feet away from me I won't even recognize them.

@uliseki8137

10 ай бұрын

Same here, my left eye is permanently damaged from ON.😢 Have experienced all other symptoms as well.

@__Wanderer

10 ай бұрын

​@@uliseki8137 I'm sorry to hear that Uliseki, blindness also came as a shock to me. I really hope I am able to keep my remaining vision for as long as possible - not quite sure what I would do if I went fully blind :/ So far I haven't had any other symptoms but I am still very early on in my diagnosis (1 year now), hoping to keep them down with my DMT but I think we also have to have luck and continue living a healthy lifestyle. Wishing you all the best, I know exactly how you feel

I have difficulty swallowing and speech issues, I deal with multiple sensation issues including itching, crawling, burning pins and needles, numbness. I have Optical neuritis. Facial pain and swelling. Sudden shocking pain in many places. Shaking, (my husband calls me wobbly as a pet name) I have cluster headaches and migraine. I have both types of incontinence, high fatigue issues, memory and cognitive issues, butterfly rashes, sun sensitivity, sjogrens. My Drs feel I have Lupus but I'm sero negative. I do not fit into one specific autoimmune box. I once lost function in my left side for two weeks in connection to a migraine. Neurologist thought I had Fybromyalgia.

@EvenSoItIsWell

8 ай бұрын

Goodness. You have quite the list of symptoms. I am sorry they can figure out which autoimmune box to put you in. Please try to take exquisite care for yourself.

@sunnysnod7483

8 ай бұрын

@@EvenSoItIsWell I was first diagnosed with Ankylosing Spondylitis because of back and joint and walking issues. Then diagnosis changed to lupus, then query lupus / autoimmune issues. I was tested for MS before my nervous system and muscle weakness issues kicked in. My assumption was one clear MS test would clarify the situation and put the possibility to bed. I had no clue you could be tested more than once. Thank you.

Ma'am MS progresses at different speeds for different people. The actress Christina Applegate has MS & she has suffered it seems a very very aggressive fast progress.

@EvenSoItIsWell

Жыл бұрын

Yes, it does. I have several MS buddies that have more aggressive MS.

@SaltySoul2

10 ай бұрын

And Selma Blair.

@EvenSoItIsWell

10 ай бұрын

Yes! She is another MSer that had an aggressive form of MS.

@kristinpruett7733

6 ай бұрын

I'm pretty sure Christina said she had MS for years without a diagnosis. Doctors told her she was a hypochondriac. So if she had help 20 years ago, she wouldn't be in the place she is now.

A tanning bed tortured me 2nd degree burns on my legs and threw uo a few hours....I have a referal to see a neurologist....dont know if it is parkinsons or MS however after seeing this vidoe it is looking like MS but no scars on the brain and no numbness. I have all these other symtoms I been documenting everything I been going through

@EvenSoItIsWell

Ай бұрын

Hi Brandon. So sorry you re dealing with so many symptoms. Glad you are getting them checked out. Please keep me posted on how it goes.

Omg I was just given official dx today - I am in shock. I have almost all of these! 😮

@EvenSoItIsWell

7 ай бұрын

Thanks for watching. How are you doing? Getting diagnosed can be a shock. Please be gentle with yourself. It may take a year or more to adjust and process.

@000pennylane000

7 ай бұрын

Today was a little rough - this odd vacillation between relief of a ex after so many years of what I now feel like should have been more obvious and both grief and anger. ❤

@EvenSoItIsWell

7 ай бұрын

@@000pennylane000 I completely understand. You may feel ALL the emotions. I started with a therapist shortly after my diagnosis and she was very helpful. I still see her after all these years. 😉 She helps me with all areas of my life.

Trigeminal neuralgia I have it. Pain suddenly comes on and I immediately have tears. For me it's a shocking pain.

@EvenSoItIsWell

Жыл бұрын

Oh I have heard it is incredibly painful! Are treatments effective for you?

@t5l239

Жыл бұрын

@Even So It Is Well No I get warnings when it's coming on, so I try to lay low so it's not too bad.

@cythiaspivey3823

11 ай бұрын

I have TN as well and it can be debilitating at times.

@frogger2007

8 ай бұрын

For me this is one of the worst symptoms, although it's hard to pick a "worst"

It is the wheelchair for me. Diagnosed in April of 2020 at 62 years old. In a wheelchair in 2 months after diagnosis and have been ever since.

@EvenSoItIsWell

Ай бұрын

@@joeh6244 aw Joe, I am sorry it progressed so quickly. Are you stable now?

@joeh6244

Ай бұрын

I have lost all use of my legs and core area has also become very weak. I do as much as I can to keep my upper body as strong as I can. I was a athletic and active man prior to MS. It is hard being confined to a wheelchair and I have pain every day. Pain is mostly in my legs.

@EvenSoItIsWell

29 күн бұрын

@joeh6244 good on you for staying active as you can. I am currently looking at research out of the Brain Institute at the Oregon Health & Science University about the benefits of exercise on relapse rates and how it may help with remyelination after a relapse.

@joeh6244

29 күн бұрын

Doing my best, but I feel like I am fighting a losing battle

@EvenSoItIsWell

29 күн бұрын

@@joeh6244 I completely understand. MS can be relentless and is particularly hard on the guys. Sending you healthy thoughts and good mojo.

Another D: Diplopia, also called double vision.

@EvenSoItIsWell

Жыл бұрын

Right! Another one!! I will have to do a follow up video with more of our unusual symptoms. Thanks for watching!

@Arzeena1990

Жыл бұрын

That was my first (and hopefully only) relapse

@EvenSoItIsWell

Жыл бұрын

@@Arzeena1990 I will add my hopes to yours too!

I’m experiencing Dysphagia and Dysesthesia. I feel like I’m going crazy. I have an MRI check next week and I’m greatly concerned that they won’t find anything. I have been in pain for the past 6 months - I just really hope they will find something 😢

@EvenSoItIsWell

3 ай бұрын

Oh no. I am sorry you are in pain. I hope they find something too! Keep me posted.

@daniellica1124

3 ай бұрын

@@EvenSoItIsWell MRI can back fine. Nothing out of ordinary. I’m really frustrated- they test me for fibromyalgia and said I don’t have it. I don’t know what to do:(

@EvenSoItIsWell

3 ай бұрын

@@daniellica1124 ugh. I am so sorry. Keep seeking answers. Ask the doctors who you should see next. Seek the advice of different kinds of specialists. Have you seen a physiatrist yet? I saw one and he was helpful in pointing me in the right direction.

I have chronic ocular migraine with aura 24/7 with occasional vertigo due to my advanced MS… that’s my baseline… It’s due in part to severe vestibular damage

@EvenSoItIsWell

11 ай бұрын

Oh man, I am sorry you have ocular migraines. They are so rough. I hope you can manage them ok.

@TheEDNC

11 ай бұрын

@@EvenSoItIsWell Thank you, I usually can handle “rough” but this is way too extreme… thus maddening. I wouldn’t wish it even on my worst enemy. Have you ever heard of Cerebral Arachnoiditis as a complication of Advanced MS?

@EvenSoItIsWell

11 ай бұрын

@TheEDNC I have not heard of that. Can they treat it?

@TheEDNC

11 ай бұрын

@@EvenSoItIsWell Sadly no. It’s an extremely rare condition often triggered by an aggressive autoimmune response to a sub-dura contaminant or direct trauma to the CNS. (ie Imaging contrast, botched Brain & Spine Surgeries, intrathecal hemorrhage, Auto Accidents, misplaced ESI’s, etc) There’s even a working theory that many of these causes that form Arachnoiditis could actually be the trigger for many types of autoimmune CNS diseases including MS.

@EvenSoItIsWell

11 ай бұрын

@@TheEDNC oh goodness. I am sorry that happened to you.

Hi there. For many years, I have had the occasional sudden jerk of my arm. Unfortunately it will often be when making a drink or once or twice when out with friends for a drink. Drinks go literally flying. It doesn't happen often but with a few other ms symptoms which are getting worse the last 2 years I am starting to think about this. Is that something that may be clonus? Or I just have a crazy jerky arm? Thank you for your videos. They are very informative

@EvenSoItIsWell

10 ай бұрын

Thanks for watching. I can’t give medical advice, but I can give my opinions.😉 it certainly sounds like clonus. Have you spoken with you doctor about it? Did they have thoughts on it?

@minnie5301

10 ай бұрын

@@EvenSoItIsWell Thank you for your reply. I have advised this and many of my recurring symptoms. They just send me away saying I am fine when I obviously am not. I think they may try to push me to fibromyalgia but I don't think it is. I am willing to go along with it to see if it helps. Our health system in UK has been decimated in the last 13 years so no doctors have to the time or resources to do any deep diving unfortunately. I am doing all the research myself.

@EvenSoItIsWell

10 ай бұрын

@@minnie5301 oh I am sorry the system is so hard. Keep advocating for yourself! And keep taking exquisite care of yourself!

What can you do to help tame symptoms as you await for your neurologist appointment? I have a consultation on May 18 but I am experiencing a lot of symptoms( numbness, itching, spasms, pins and needles in lower spine, bug crawling sensations, restless legs, muscle and I twitching, weakness in arms and legs, trouble walking at times, electric shocks, tremors) with this flare. I had another one that was reported in 2016 but that neurologist just gave me one test, EMG, and dismissed me with joint pain. Any advice greatly appreciated 🙏

@EvenSoItIsWell

Жыл бұрын

Thanks for watching. Until you can see the doctor and possibly get some medication to help with the symptoms I always recommend four things; eat a whole food plant based diet, exercise regularly, get good sleep, and practice mindfulness/kindness. Doing all these things over time may help with the symptoms. If you can get your vitamin D and B12 levels checked too, these two supplements may help as well. Sometimes magnesium can help with the spasms and restless legs too.

@sl4983

Жыл бұрын

​@@EvenSoItIsWell that was such great advice 👍

@anav7774

Жыл бұрын

How did it go?

@kendregab7328

Жыл бұрын

@@EvenSoItIsWell Thank you for the advice! Yes I am eating better, have been taking 500 MG of Magnesium, a whole food vitamin, vitamin D and C everyday since 2020. I did blood work last week still waiting for my results. My neurologist says she thinks I may have neuropathy even with my walking difficulties and the electric feeling I feel when I bend my neck down and turn it both left and right. She scheduled an EMG for me in July. I did an EMG in 2016 and the neurologist just conclused my left side of my body is weaker than my right. That's all her found. I'm not sure how that relates to MS when I asked her to be tested for MS. My questions are if I do the EMG and neurological tests and they come back normal I guess that means I don't have MS? Should I still ask for a MRI anyway no matter the results to rule out MS? Thank you for your advice 😄 😔

@kendregab7328

Жыл бұрын

@@anav7774 Hello! So I saw a neurologist and told her all my symptoms (including the walking issues with pins and needles, unbalanced feeling and the shock feeling I feel when I move my neck down down and to the left and right) and she pointed my symptoms to neuropathy related and not MS. I did the neurological tests you do in the office. After my exam she said she didn't see anything that suggests I have any brain or spinal cord damage. She scheduled me for an EMG test in July and she said she'll do the neurological tests on me again after my EMG. I also did a lot of blood work and the results are pending. I'm a little loss with her approach. My questions are if I do the EMG and neurological tests and they come back normal I guess that means I don't have MS? Should I still ask for a MRI no matter the results to rule out MS? I'm confused at the point 😏

OMG I get the face pain and believe me it is extremely painful and crippling. I never thought about surgery, because it rarely happens. Oh and yes smoking THC or delta 8, definitely does help. At least for me it does.

@EvenSoItIsWell

2 ай бұрын

So glad the THC helps! I know many that find relief with it.

I have all of these. Dx in 1994. What is it called when I have jerking movements in my arms? Sometimes it happens at the most inopportune time. Also, spasms in my diaphragm. Strange. Thank you.

@EvenSoItIsWell

5 ай бұрын

Thanks for watching. It may be called spasticity or clonus when we have jerking movements.

Vertigo and unusual sounds like iron welding or voice

@EvenSoItIsWell

16 күн бұрын

Oh interesting! I had not hear of iron welding before. Thanks for watching.

I have problems with my vision and fatigue.

@EvenSoItIsWell

Жыл бұрын

Sorry you are experiencing that. Keep taking exquisite care of yourself!

your videos help me alot to understand what is MS. i myself struggle since i was 12 with a rare chronic condition ( i had an accident with my bike who fell on my chest and since then, it became a trigger point for inflammations and constant pain) where i went from doctor to doctor, everytime they gave me ibuprofen what helped at the start but when i grew older, it went worse so the ibuprofens was 1g then into diclofenac to the point i constantly overdosed myself. Back to my doctor for new medicine but this time Lyrica. ( i couldn't function anymore with that medicine so i stopped taking it) After that i told my doctor that i had enough of pain killers and they should send me to specialists and so they did. There i told them that people called me crazy ( even my doctor) and nobody believed my pain is real. They checked my chest and my back and felt right away that my muscles are stuck at my bones. On that point they told me about the Lyrica medicine that the same kind of medicine would relieve my pain but since i am young still, they didn't want to give me. So instead they gave me an explanation what is wrong with my body without naming the disease itself ( maybe not to scare me) then they gave me therapy to see how affected my movements was and they seen that 5 KG is my max lifting weight but i can't liftinf or exercising for longer then 45 mins. Also they gave me a stress relieving therapy to try make myself stable. Untill this day, i been looking myself what is wrong with me and tell myself that i am not crazy at all. I know that something is wrong with me and i feel my condition getting worse each year. now i don't want to say that i have MS since i also feel like it is close to Fibromyalgia. but from what i can find, these 2 diseases seems most likely, it scares me but i want to know so i can find a therapy or medicine that works when i need it. thanks for the information in your videos and helping people with chronic diseases to not feel alone and to guide us towards a life that is bearable for all of us

@EvenSoItIsWell

Жыл бұрын

Thanks so much for watching. I am so sorry you are dealing with this pain for so many years. Keep advocating for yourself and seeking answers. Ask for referrals and second opinions. You are right, it is better to know so that you can receive treatment. Keep me posted.

@debragracerobin

9 ай бұрын

Look into Ehlers Danlos Syndrome

Just wondering if body tingling after sneezing happens with ms?

@EvenSoItIsWell

Жыл бұрын

Oh interesting question! I have not heard of it before but it is possible that it might be like Lhermitte’s sign.

Thank you🙏I have referral, Rheumatology January 2025 I a waiting but I have most of symptoms I have scalp itchy, and tender and bad back pain I had doctor appointment with dermatology 2 days ago she thought nervous issue.My doctor said mild fibromyalgia it’s really bothering me I don’t know how to figuring out❤

@EvenSoItIsWell

Күн бұрын

@@gonderc885 thanks for watching. Good luck with the appointment in January. Figuring it out is a challenge when it comes to auto immune diseases. I recommend bringing a full list of symptoms, even symptoms that may have happened years ago. A complete health history may help.

Did anyone ears hurt? Not inside, but the actual ear, mostly towards the top of the ear...

@EvenSoItIsWell

Жыл бұрын

Hi Sissy, I have not had that symptom, but since MS can affect any nerve I would guess it is possible.

How about telling us about SPECIFIC treatments with medication ?????

@EvenSoItIsWell

11 күн бұрын

@@margaretmacinnes1519 thanks for watching Margaret. Choosing and taking g medications is a very individual and personal decision. I don’t typically talk about medications on my channel because I am not a doctor and can’t give medical advice.

I was told I was misdiagnosed and after reading about MS I'm thinking this might be the answer. I didn't think about the stuttering that I've picked up could be part of MS.

@EvenSoItIsWell

Жыл бұрын

Thanks for watching. Definitely log all your symptoms and check with your doctor. There are many conditions that share symptoms, but it worth checking out.

@rey-yac

Жыл бұрын

@@EvenSoItIsWell I'm starting a log

@MatidaJane

7 ай бұрын

My daughter has this although she doesn’t have MS. It is a shocking disease. 😢

My cheeks itch like when Novocain is wearing off and no amount of scratching can help it.

@EvenSoItIsWell

9 ай бұрын

Thanks for watching. I have heard the itching can be maddening. It must be so frustrating.

My hearing is affected by my MS. My hearing test results come out normal because these tests do not measure neurological impairments. I have some type of auditory nerve damage. Also, if there is any background noise, then I cannot hear what someone sitting next to me, or across from me, is saying to me. Nor can I hear what is being said when people whisper to me. People who slur their speech drives me nuts. I cannot understand what they are saying, yet when I am fatigued, my speech becomes slurred.😮

@EvenSoItIsWell

2 ай бұрын

Oh interesting! I have had some problems focusing on conversations in situations where there is background noise too! I wonder if it not being able process what I am hearing? It must be so frustrating when added to when people slur or whisper.

I have like a whole lot of symptoms but the point is i went and did a mri of brain and the doctor told me its a sinusit and i said okay fine even tho i couldnt believe him cuz i knew i had alot of symptoms that were not related at all with sinusit . I got medication for sinusit and nothing changed not my numb right face not my fatigue and nothing changed i was all the same. I am 17 and i have alot of symptoms which some i cant say u know why . But its really weird that i know more then the doctor and ill not let this slide and ill go again and disccus this . Because idk if anyone have this feeling that they know they have it. My upper right thigh is a little numb and it affects me its so weird that i explained alot to my doctor and he said its not ms because it would show in mri . It says that 5% of ppl have reported having ms without lessions on the mri

@EvenSoItIsWell

Жыл бұрын

Hello Martin, thanks for watching. I know it can be so difficult when you don’t have answers. Please keep advocating for yourself and asking for referrals and second opinions if the treatment you received did not help.

@claraguy9437

Жыл бұрын

I'm 17 too and since I have braces my MRI was deemed unusable, and I have had 2 eegs done. One normal one, another 3 days long. Both of my neurologists have told me it's just stress and that I need therapy. I have gone to therapy for YEARS and have yet to see improvement. FIGHTING FOR YOU! I currently am pushing to get diagnosed as I too have more in common with Ms then FND which is often misdiagnosed Ms. Lol😅.

@EvenSoItIsWell

Жыл бұрын

@@claraguy9437 so sorry you are having a hard time getting a diagnosis. Keep advocating for yourself and asking for second opinions.

Did you live in a house for a long time that had black mold ?

@EvenSoItIsWell

Жыл бұрын

No, I did not. But I have read a bit about mold and its possible effects on the brain.

I have Neuromuscular Scoliosis which share many side effects. I also have Fibromyalgia 😩

@EvenSoItIsWell

11 ай бұрын

It is amazing how many conditions share symptoms. It is no wonder they are hard to diagnose. Thanks for watching.

I get internal tremors .. you can’t see from the outside any shaking, but inside it feels very uncomfortable. Is this part of MS?

@EvenSoItIsWell

8 ай бұрын

I can’t give medical advice but yes, tremors can be a part of MS. Definitely check with your neurologist about your tremors. They should be able to let you know for sure.

I have some of these symptoms for years, but I am not diagnosed with anything. I suspected MS but doctors told me my symptoms are too mild for MS and in that time span, I should be physically disabled to some degree. I have especially the Itching problem which appears mostly in lower leg, it's not the skin it's deep deep inside my legs and it's extremely strong and uncomfortable. Since I am Iron deficient, I've been told that might be the real cause. I also have occasional unexplained vertigo, twitching on various places especially feet and face and calves and thumbs, and neck pain with headaches that sometimes lasts for days or weeks. I also have problem with overactive bladder which urologists can not explain. I have no idea why is all this, I had brain MRI and it's clean.

@EvenSoItIsWell

2 ай бұрын

Thanks for watching. Ugh, I am sorry you are having those symptoms. Especially the itching. It can be so maddening. Keep advocating for yourself with the doctors. Ask for referrals and second opinions. Keep seeking answers. It can be tricky to diagnose autoimmune diseases and disorders.

@biljam972

2 ай бұрын

@@EvenSoItIsWell thank you!

Nice shelves.

@EvenSoItIsWell

8 ай бұрын

Thanks! And thanks for watching.

Drinking alcohol minimal with Tony Montana as a guess are the only off label medications that work for me. Have tried everything.

@EvenSoItIsWell

2 ай бұрын

Nothing wrong with a little drink with Tony.

I'm having these shmptims 😢 they aren't taking me serious .😢what do I do

@EvenSoItIsWell

7 ай бұрын

Hi Cindy, thanks for watching. If you are not getting a diagnosis as for referrals or second opinions. "Since you haven't been able to diagnosis me is there someone you could refer me to?"

I suffer most of these symptoms for years but doctors say I don't have MS

@EvenSoItIsWell

Жыл бұрын

Thanks for watching Kathie. There are many reasons we may have symptoms. Autoimmune disorders can be very tricky to diagnose. Keep advocating for yourself and asking for second opinions or referrals until you can find the cause.

I'm having left side face swelling how to get rid from it I'm taking my meditation as well .

@EvenSoItIsWell

Жыл бұрын

I am sorry that is happening. I can’t give medical advice, please reach out to your doctor. Swelling of the face is not typically associated with MS.

@mzvictoria8842

Жыл бұрын

I have pain in the right side of my face. When it started I thought if was gritting my teeth. Now it is triggered by touch inside my mouth and under my chin to my ear. The best pain relive I have found is regular rice placed in a tube sock, then microwave until really warm. Stops my crying. I also have swellng in my cheek.my son noticed it. I have to be careful to eat soft food and chew on the right side Neuro doc at er said trigeminal nerialgia.

@EvenSoItIsWell

Жыл бұрын

@@mzvictoria8842 what an ingenious solution to the pain!

Different glasses? NICE! ❤️

@EvenSoItIsWell

3 ай бұрын

They are very fun glasses. Pair Eyewear Glasses Unboxing (Blue Light Filter) kzread.info/dash/bejne/rI6OzLuvj9vFhcY.html

@CaseOFContent10

3 ай бұрын

My first symptom was that a speech impediment came from nowhere!! I had a lisp. I tried to tell my husband that he was handsome but it came out HANDTHOM :( it was sad. I also had dizziness and a problem moving my legs.

@EvenSoItIsWell

3 ай бұрын

@@CaseOFContent10 changes in speech are crazy aren’t they? Has that symptom resolved?

@CaseOFContent10

3 ай бұрын

@@EvenSoItIsWell Indeed! I am taking Vumerity. Seems to be ok but the dizziness and balance issues just remain. I’d REALLY like to know what caused MS. Idk what I did but I feel guilty for doing it.. because now I have to spend my life like this 😔

@EvenSoItIsWell

3 ай бұрын

@@CaseOFContent10 you did nothing to cause this!! MS happens to us we aren’t to blame. I implore you to let go of the guilt and instead focus on self care. 🥰

I have holes in my retina 20 yrs ago, I use to get a burning sensation, and sometimes even water running down my leg. I have had no doctor even listen to me, and I have Hashimoto's thyroiditis at 25 yrs old before that it was over active to the point I couldn't stop eating and talking and lost a bunch of weight than a huge goiter no menstrual cycle for a few mos. I HAVE SUCH PAIN IN MY NECK that came after virdigo that lasted almost a year super intense for 1 week. ( Driving a cement truck was the only relief I had do to the vibrations I think. So lungs scarring and thickening cortical cysts lots of them on my adrenals than Breast cancer that IDC , and dcis, CKD STAGE 3 and my oncologists would not even listen to me or my primaries. They all order all these different blood tests all these different images that cost thousands and thousands of dollars but never follow through I'm done in the medical facilities that my insurance now limits me cause of contracts that they negotiate with the doctors. So, if you have nodules on your lungs and thyroid they won't even listen or order or look at my images from previous radiologist. What kind of thinking that lupus multiple sclerosis Dementia or at least Parkinson's MS and a couple of other autoimmune diseases are the same thing they're all neurological and why does it take 8 years to diagnose Ms 8 years of diagnosed Parkinson's 8 years of diagnosed dementia Alzheimer's Louie's bodies everything takes eight years cut the b******* out listen to the patience maybe we can get somewhere together. For now I have all this and my several hyperintense foci T2 periventricular and subcortical with scarring in my eye, which yes had major surgeries. Not one doctor did any inquiring after I addressed all these issues. I'm really nervous now cause I'm loosing all my strength and the pain in my feet and back, but the pain in my neck and radiates up to the back of my eye...eyes. Lost all vision in one and impaired in one do to macular holes and detached ret. I would have appreciated them looking at my family med history, and mine. But they just kept saying take the anastrozole and I wouldn't cause of these effects on my eyes. I think my perimenopause cause my eye blindness in a one in the second one was whole so I definitely had a retina which is the brain so maybe one day I'll get an answer to what I have or what made me go blind at a young age and I was told I didn't have diabetes but I'm looking at all my blood work for the last 10 years I've had high blood sugar and I've had a a1c from a 56 to a five night for the past 10 years but they always said nope you're not even pretty diabetes. I hope this MS isn't another BREAST CANCER MONEY MAKING DISEASE.

@EvenSoItIsWell

7 ай бұрын

Oh my goodness. I am so sorry you have been through all that. Keep advocating for yourself and seeking answers. I hope you can get some answers and some help.

I need a doctor in Houston

@EvenSoItIsWell

8 ай бұрын

Thanks for watching. Unfortunately, I am not familiar with doctors in that area. Try searching for MS specialists in Houston using Google.

I have a question? I'm not sure this is even a symptom of MS. I have several times been at functions at church where I've been left standing alone by my husband in the middle of the floor and he will walk off. I have absolutely no support, such as a cane or wall to lean up against. There's alot of milling about around me. I get a feeling that if I move my footing one inch, I will lose my balance and fall out in the floor. It's a very scary feeling for me. I don't lose my bearings or not know where I am. I just feel as if I have to find an immediate secure place and sit down to keep from falling.

@EvenSoItIsWell

11 ай бұрын

Thanks for watching and the questions. I can’t give medical advice but what you are describing sounds a bit like mild vertigo. I have occasionally felt something similar. The motion of the people around me seems to make me feel unsteady or off balance a bit.

Do any of you notice worsening symptoms in the week or so before your cycle starts? What about facial twitching?

@EvenSoItIsWell

10 ай бұрын

Thanks for watching! I have had twitching and it typically goes away if I shift positions or if I drink something. They seem to happen more when I am dehydrated. I am in menopause now, but I used to notice increased fatigue prior to my cycles.

@blissfuljoy6049

10 ай бұрын

@@EvenSoItIsWell Thank you for responding. I have been noticing definite increased fatigue and other symptoms that could just be PMS but what's really weird is that I have been getting twitching above my eyes and mouth and sometimes just strange disorienting sort of sensations. I have a lot of joint pain too that gets worse with PMS and have had psoriasis and other symptoms since I was a teenager that could definitely be autoimmune related. Some symptoms have gotten better with lifestyle changes but I am almost positive I have a form of juvenile arthritis at minimum. Also I have what is thought to be an essential tremor off and on the whole month in my hands but sometimes feel vibrations sort of through my chest. Recently I had burning spots in my legs but this has only happened a couple of times and I've read it's usually really consistent if it's MS related so who knows. I guess I may have multiple autoimmune issues but nothing super life altering. More distracting.

@EvenSoItIsWell

10 ай бұрын

@@blissfuljoy6049 yikes! Sounds like you have a lot going on! It can really be a game we have multiple things it could be. I now the the “is it MS, menopause, or long Covid game.” with my doctor. Sometimes we just don’t know. Definitely check with your doctor on any symptoms or new symptoms. Keep in touch and let me know how you are doing.

@blissfuljoy6049

10 ай бұрын

@@EvenSoItIsWell Thank you, hopefully we can figure out everything! Early menopause has definitely crossed my mind as a possibility for some of my symptoms too. I'm in my late 30s but I've had hot flashes for years as well as other possible menopausal type symptoms. I was just reading that hormonal fluctuations can definitely exacerbate symptoms with autoimmune diseases along with the typical frustrating symptoms that come along with PMS and menopause.

Not diagnosed yet but I have every symptom. I have started sleeping almost sitting up do to choking on my own saliva. I sound drunk sometimes when talking. Actually was charged with an impaired driving charge….sobre! Blew a zero and failed one eye test…also a symptom of Ms (my eye). Been complaining that I feel like I’m getting Alzheimer’s for over two years now. Been falling down randomly for the last few years; broke both elbows, fell and broke my tailbone twice. I forget things very easily. I had the back of my neck cut out in May 2021 as no blood was going to my brain. It was mid pandemic and I was in the ER in less than 24 hours. Mood swings are off the charts. Vision comes and goes. I have felt tremors inside my body. I dump my coffee/tea at random on myself; use a mommy sippy cup now. I get weak and tired daily. I was a woman that never sat down. The clonus happens with my elbow. Migraines are constant. Did piercings which helped reduce them. I had an MRI without dye and my cord lit right up with a possible diagnosis of transverse myelitis and then with dye I fell asleep so a good image wasn’t achieved. They were going to do a spinal tap but chose not too after they didn’t get a good image without dye. I get bad bouts of insomnia: 5 days was my longest stretch. I was diagnosed with sleep apnea. I get problems with my left leg, to the point I’m dragging it. I was very active. My house was always spotless. Now I don’t even want company. I spend many days in bed exhausted and can’t sleep even though my eyes are burning. I’m seeking a second opinion by another neurologist. They found what matter on my brain, chocking it up to migraine scarring. I just want to know what’s wrong?! My white blood cell count is high. I know my body very well and I’m a reiki master that is very intuitive. I get bladder issues; super urgency without warning to having to push to pee. Constipation and then twice in October completely lost bowel control without warning or flatulence. Idon’t want MS but it seems to me that all of my problems fall under MS 😢something isn’t right, I stay as positive as possible but I’d put money down that I will eventually have my diagnosis.

@EvenSoItIsWell

8 ай бұрын

You were charged with impaired driving! That is crazy. I am so sorry that happened. I hope you can get answers soon. It can be so frustrating when we have symptoms but no answers. Thanks for watching.

i think i have vascular eds but i also have all of these as well

@EvenSoItIsWell

4 ай бұрын

Thanks for watching. I am sorry you are experiencing numerous symptoms. Be sure to speak with your EDS doctors about the additional symptoms or seek another option on the additional symptoms. Keep advocating for yourself.

Jaw clenching and jolting wen sat stil are 2 symotoms I get 😐

@EvenSoItIsWell

4 ай бұрын

Thanks for watching. Yikes, those sound like frustrating symptoms.

Ive lost mt sight throughmy left eye with m,s

@EvenSoItIsWell

Ай бұрын

Ugh. I am sorry that happened. How long ago did it happen?

I have all this and my Dr says I am not quite sure. I’m like you have to be kidding me. Help me while I still am able to go. The bug crawling is weird. I constantly hit my legs. I see falling stars when I close my eyes at night.

@EvenSoItIsWell

2 ай бұрын

Oh, I am sorry you are experiencing this. I hope the doctor is ordering tests to confirm what is causing it.

@patriciahandy8447

2 ай бұрын

I have floater’s in both eyes. Now testing for glaucoma. 2 back surgeries for bone spurs, spine tap. They have vertigo, nausea. I have been taking meds for 3 years for nausea and vertigo. Terrible spasms in my legs. My right calf hurts terrible. The heat deal is unreal not to mention no sleep.

@EvenSoItIsWell

2 ай бұрын

@patriciahandy8447 oh goodness honey, sounds awful. Keep advocating for yourself and seeking answers. Ask for referrals or second opinions. Seek them on your own.

@patriciahandy8447

2 ай бұрын

@@EvenSoItIsWell I have been working on that. I have been asking for more testing also they have checked me for lupus. They say I don’t have lupus but an autoimmune disease. Not sure which one. Have not gotten any farther. They know I have arthritis and osteoarthritis. Who knows.

I had sudden hearing loss after a 2 week bout of vertigo!

@EvenSoItIsWell

Жыл бұрын

Oh no! I hope it has resolved.

@Kai-el7rw

10 ай бұрын

@user-me2zc2pe7x we love natural cures! Thank you!

@Kai-el7rw

10 ай бұрын

@@EvenSoItIsWell yes…after about 6 weeks of prednisone, I have about 75% back..just one ear had the sudden hearing loss. Sudden hearing loss is now listed as a symptom of MS. Only took 30 years.

@EvenSoItIsWell

10 ай бұрын

@@Kai-el7rw I am so glad most of your hearing has returned. And hooray (?) we have another symptom to add to the MS list!

Uhthoff's phenomenon This happens to me. My vision goes black. Is this only caused by MS?

@EvenSoItIsWell

Жыл бұрын

Hi Tera, thanks for watching. No, vision problems can be caused by different conditions. Please see your eye doctor to have it checked out.

@ithacacomments4811

Жыл бұрын

Vision can go black when a person's blood pressure is very low.

Excersize is a dream long gone for me nowadays! My dancing days are over 😐

@EvenSoItIsWell

4 ай бұрын

I am sorry the dancing days are over. Perhaps there are some modified exercises you could do? Have you seen Dr. Gretchen Hawley? www.drgretchenhawley.com

@TinaLouise73

4 ай бұрын

@@EvenSoItIsWell unfortunately I live off less then £80 a week cant afford it 😐

@EvenSoItIsWell

4 ай бұрын

@@TinaLouise73 I completely understand. She has some wonderful free resources and sends out tips via emails. Check her out.

Has anyone dealt with feeling like they are drooling? It's started a couple weeks ago when was having terrible ear/jaw pain and was treated for ear infection. And the same week I had the strangest experience, middle of the night woke itching all over my torso and legs, my chest. I didn't scratch but wiped with baby wipes. I ended up stripping down myself and bed, once cooled down I went back to sleep. It felt like this lasted for an hour but it was more like 20 minutes I believe. I have a call in to schedule a PCP visit.

@EvenSoItIsWell

4 ай бұрын

I haven’t had this happen, but I am glad you called your doctor.

@EmilyEmilyEmily01

4 ай бұрын

@@EvenSoItIsWell Hi! Yes so far he's been great when dealing with my back issues. Part of me is wondering if that was a hot flash although I think I am too young for those, def see why they are loathed if so! Whether I have a neuro issue like MS I appreciate your videos, very informative!

Tremors are always in the back of my head in populated place mental pep talks go "If I get up don't start".

@EvenSoItIsWell

5 ай бұрын

Tremors can be so distracting and disruptive. I hope they aren’t too troublesome.

I experience EVERY single one of these. Sadly, lol.

@EvenSoItIsWell

Жыл бұрын

Ugh. There should be prizes or gifts for you!

@ThrifterPickerShipper

Жыл бұрын

@@EvenSoItIsWell Well now THAT'S a good idea! Hahaha BUT above all else, I am grateful. Grateful for my ability to walk.

@EvenSoItIsWell

Жыл бұрын

@@ThrifterPickerShipper every year on World MS day I ask if there will be presents. 😉

@ThrifterPickerShipper

Жыл бұрын

@@EvenSoItIsWell Great plan! Do you ever receive any? LOL

@EvenSoItIsWell

Жыл бұрын

@@ThrifterPickerShipper once I did from a dear aunt of mine. It was very sweet.

I can’t find a doctor that believes me 😢

@EvenSoItIsWell

Жыл бұрын

Keep advocating for yourself. Ask for referrals and second opinions. Seek out other doctors. It can be tremendously difficult to diagnose autoimmune conditions and it can take time. Keep me posted.

Double vision in MS is NOT unusual.😮

@EvenSoItIsWell

Жыл бұрын

In my experience many do not realize that double vision is something that can happen with MS which is why I included it in my list.

@gabikynigou2523

Жыл бұрын

@@EvenSoItIsWell True, i have that and I went to ophthalmologist and ORL-ist before i went to neurologist… now I know!!!🙃

@EvenSoItIsWell

Жыл бұрын

@@gabikynigou2523 glad you got it checked out! Thanks for watching.

@kimberlee2809

Жыл бұрын

I just found this video but would be interested if you have a video (or could do one) differentiating MS and Migraine lesions. I had a team of doctors who were diagnosing me with MS and a wonderful neurologist who informed them in my case they were wrong. Chronic migraines cause very similar demylinization and sometimes doctors have difficulties distinguishing even with imaging and serum tests. I was having MS like symptoms that were caused by Migraine lesions. The nervous system is amazingly complex.

@EvenSoItIsWell

Жыл бұрын

@@kimberlee2809 oh wow! I am glad they determined it was migraines and I hope they can treat it. I don’t have a video on it yet, but will look into it.

Dyasthetic? However you spell it … is that like when your bone feels itchy? I get it in my foot. Itchy the skin does nothing. If I put my foot in cold running water it helps. Lidocaine as well helps. I also get this in 1 spot on my face. One tiny little spot.

@EvenSoItIsWell

Жыл бұрын

Oh itchy bones!! It is amazing what our brains will do with signals that are interrupted or wonky. I also have a patch on my face that is affected. Mine is sensation loss, not itching. I have run into many that have patches on their face too.

@Violett_Ginn

Жыл бұрын

@@EvenSoItIsWell we are an odd bunch aren’t we ;) We may be odd but there’s always someone who can relate !! 💜

@Farmgal51

Жыл бұрын

My chin. The intense itching, tingling on my chin, usually upon laying down... very horrible

@EvenSoItIsWell

Жыл бұрын

@@Farmgal51 I have heard that the itching is the worst and that it is an itch that can't be scratched. I hope you can find some relief. Have your doctors been able to help with it?

I would like to know if you are speaking as a patient or a medical professional? What qualifies you to peddle information like this to people who are chronically ill?

@EvenSoItIsWell

Жыл бұрын

Thanks for watching and the question. I am a person with MS. I do not dispense medical advice. I share information and share what the research shows.

Dysphagia is Really Bad. I don't know if MS Causes mine. Maybe a combo of Anterior Bone Spurs (Located Right at my Epiglottis Turnpike) & a Nodulous obstructive Thyroid. MS? Maybe it is a Clandestine antagonist Too. All I know is, I haven't had a Care Free meal for Years. Every Meal is like a Siege with me being a Border Guard against Choking: Seeds, Skins, Certain Shapes or consistencies or Textures. At First I ate ice cream all the time like Joe Biden. Fish Tacos and Steak & Chips are but a Dream. Life is Joyless. No surgeon will Help me. And Shaving the Bone Spurs + Thyroidectomy are so do-able. If anyone cares Enough to imagine how it feels. Someone should send a Warship up the Yarra River and Rescue the Guy from Tyrannical Elements - Righteous Journalist

@EvenSoItIsWell

27 күн бұрын

@@MichaelBone-hj7sr thanks for watching. I am so sorry you are experiencing all of that. I encourage you to keep advocating for yourself and seek different doctors to see if anything can be done.

@MichaelBone-hj7sr

27 күн бұрын

@@EvenSoItIsWell I'm just so Tired of Begging for Help & being Fobbed off or Denied, that I have basically given up. I don't know if it's a Political Impasse ~ but it Feels like it. Ergo: I have a Hole in my Maxillary Sinus Bone since 2014 after All my Teeth were extracted. 34 ENT & Maxfacs Later... Each subspecialty telling me it's the Surgical Domain of the Other. Like some Arcane Arcade Game. Whack-A-Michael? Thus my Humour Helps. I went to a GP and asked for a Prescription for IMMIGRATION® (He Laughed. I didn't).

Soory but Myasthenia Gravis is known as the snowflake disease.. and is rarer compared to ms& related to ms .. ms is very common 1 out of 68 ppl hav ms,,

@EvenSoItIsWell

Жыл бұрын

Thanks for watching JacxRuby. I have a friend with Myasthenia Gravis and yes, it can have very varied symptoms too. I was not saying MS is uncommon, just that we can all experience it differently.

@nicolesaylor4027

Жыл бұрын

MS is also considered a snow flake disease. No 2 are the same. This fact as zero to do with other autoimmune diseases. She is being MS specific.

@nicolesaylor4027

Жыл бұрын

And I would like a link proving this 1 in 68 people have MS because I don't think this is right.

You might have Lyme's disease.

@EvenSoItIsWell

Жыл бұрын

Thanks for watching. I have been tested for Lyme’s many times.

@SamT26

Жыл бұрын

@@EvenSoItIsWell I wish the best for you and I hope you find an excellent holistic doctor. Conventional medicine is limited to drugs, until they run out of options. Conventional tests for Lyme's disease also fall short on the accuracy scale. I honestly don't know if they have improved over the years. It's been nearly 20 years and had I kept with the diagnosis by a neurologist at a famous hospital, I would most likely be in a wheelchair. Thanks to a total stranger speaking up to me (whom I believe God put in my path), a caring holistic doctor, a frequency generator and a zapper -- I have my life back! God Bless!

@EvenSoItIsWell

Жыл бұрын

@@SamT26 thanks so much! I work with my neurologist and a naturopathic doctor. You are right that naturopathic doctors ring much to the table!

Nobody ask the question that begs to be asked and answered . Where does this all come from or who started this . This just doesn't happen. What say you guys?

@EvenSoItIsWell

Жыл бұрын

That is the million dollar question! I believe they are honing in on why MS starts. There are clues with environment (such as sun exposure), diet (B12 deficiency or other deficiencies and consumption of different nutrients), and the connection to viruses (Epstein Barr Virus was causally linked to the development of MS this year). Thanks for watching!

@artemisnectar7

4 ай бұрын

#ray 🖐🏽 I was diagnosed with Ms in 1998... they tested me 4 everything prior to an MRI.. showing 2mm lesions on my left hemisphere... Allegedly no Known Cause or Cure... I found out that 3 of my female cousins also have it.... Hopefully there will be further studies & genetic analysis 💁🏾‍♀️... It's rough.... 😭

@EvenSoItIsWell

4 ай бұрын

Wow, 4 family members with it is unusual. I hope you are all doing ok.

What about ms hug ? Dr wouldn't even help. Size 12 but i wear a double x.. XXL sports bra. 25 yrs and my neurology group doesn't even call back Interferon x2 caused warning signs of me wanting my teen age daughter to find me dead in the yard. I call dr. They prescribe antidepressants. I wasn't depressed. The drug co didn't want to lose my insurance $. Finally w frank speech the neuro group apologized. Ms drug co are just as bad as sackler family. Old RN. Dr say i should not get on internet. I told that dr i didn't i used a nursing patho book to diagnose myself . Other suffers beware.. instructors don't have the disease. 25 yrs later i have lost my faith in neuro Dr and instructors.

@EvenSoItIsWell

2 ай бұрын

Oh I so sorry you have had such a rough experience with your doctors and insurance. The MS hug is definitely one of our more challenging symptoms. Stretching and muscle relaxers sometimes can help. Keep taking exquisite care of yourself!

@vh3092

2 ай бұрын

Currently I am having a little relapse. I retired but found that I always felt better w jobs that helped me be force myself to not lose anything cognitively. Also body movements are important. I sold flowers this spring and breathing 3k flowers caused a severe resp reaction. So I got sick and allergies are bad and slowly after 4 weeks of the cough and sputum I'm beginning to feel better. Yes relapes can be do to an infection. I lost my balance and my gait was/is lumbering. Parathesia and neuropathy. I have to rest and wait it out. I've crawled before but not this time. I have a cane but refuse to use it. Stubbornness helps me. Thank you

@EvenSoItIsWell

2 ай бұрын

@@vh3092 Stubbornness helps us all! ☺

@vh3092

2 ай бұрын

Yes and prayers

@vh3092

2 ай бұрын

Cause of my ms. I was comatose for 6 days at the age of 3. 1960 My aunt told me in 2010 I was in icu with total isolation and fever 104. They said it was encephalitis. Could have been epstein barr. Who knows. Hx was destroyed yrs ago. In 1998 I was hospital ized due to failed root canal dentist tried to fix. Had 3 days of iv antibiotics waiting for er to get me to an oral surgeon. Er goofed. Wbc 20k after antibiotics. Face so swelling I had to take syringe to give me some fluid. Oral surgeon admitted me, because of infection and high wbc. Surgeon removed tooth and inserted jp drain inside mouth to facilitate w edema. I couldn't feel my upper lip for months. Dr and dentist said r brain l brain r/t numb upper lip, so they did believe me. Sept 98. Dec 98 paraesthia esp in legs. No o e listened. March 99 I felt over 300 involuntary movements of my body. That night I opened patho book and diagnosed self w ms. Still no listened. Finally I demanded neuro Dr. Mri I lesion parietal lobe. Spinal 9 o bands. Dx in June of that year. 9 months of these sx. Dr apologized, before they knew me but still they should have listened. I think whatever virus from coma at age 3 lay dormant and went over blood brain barrier. Sorta like Chinese pox and possible shingles later on life. They only did 2 mri first 23 yrs. One lesion. Mri Dec 2023 no lesion just total Leukoencephalopathy. I had to tell them parietal lobe in 99. See they didn't have good records. Neuro knows via t/c I've been sick with extreme allergy cold symptoms. They don't even see me. Prednisone iv caused psychosis in 2011. I didn't know my own name etc. So now I take Valium prn and clonidine 0.1 bid for tingling. I was addicted to Valium because I used to take 10mg qid. Dr rx this to keep me working. Detox from that was h. Prn now but I did take 25mg yesterday to finally sleep. Ms is weird and some sx are hard to explain. I retired at 55 yrs but now a 67yrs I work non nursing jobs to keep moving. Too many theories on how we got it.

So much untrue information…….

@EvenSoItIsWell

8 ай бұрын

What do you feel is untrue?

Vaccine injury

@EvenSoItIsWell

10 ай бұрын

Thanks for watching. You have commented several times on vaccines. In the most recent research they cannot state for certain that there is an association with the newer vaccines. They also state "no clear or strong scientific evidence exists to support the association of vaccine administration with the onset of demyelinating diseases." Here is more on it if you would like to read it. www.ncbi.nlm.nih.gov/pmc/articles/PMC10108897/

I am 20 years old. I have been diagnosed with trigeminal neuralgia. Prior to that, i got sharp shooting pain in my right hand that comes and goes, the doctor treated it with medication but couldn’t find a reason. I have vertigo everytime I change my position which causes me to fall sometimes. Every now and then I get a burning sensation in one of foot which also comes and goes. I get air hunger in summers which makes me feel like I will pass out soon. My blood tests are normal. I went to the doctors and they said I had hyperrflexia and referred me to the specialist who said it is all because of anxiety. I also get random emotional outbursts. I have had anxiety since I was a kid and I know enough to tell this isn’t it. I do think I have MS, but no one will listen

@EvenSoItIsWell

2 ай бұрын

Thanks for watching. I am so sorry you are experiencing all of that. Please keep advocating for yourself. Ask for second opinions or referrals or seek them out on your own. Autoimmune conditions can be very difficult to diagnose and we may need to see several doctors.

I am 20 years old. I have been diagnosed with trigeminal neuralgia. Prior to that, i got sharp shooting pain in my right hand that comes and goes, the doctor treated it with medication but couldn’t find a reason. I have vertigo everytime I change my position which causes me to fall sometimes. Every now and then I get a burning sensation in one of foot which also comes and goes. I get air hunger in summers which makes me feel like I will pass out soon. My blood tests are normal. I went to the doctors and they said I had hyperrflexia and referred me to the specialist who said it is all because of anxiety. I also get random emotional outbursts. I have had anxiety since I was a kid and I know enough to tell this isn’t it. I do think I have MS, but no one will listen to