Welcome to the Connected Rheumatology with Dr. Elizabeth Ortiz channel! Education is central to my mission and this channel enables me to reach the broad and diverse group of those living with or interested in rheumatic conditions.
I aim to provide up to date and practical information about all things rheumatology so that you can make the best health decisions for you and your life.
** The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional. Any comments and/or recommendations made in the comment section by anyone other than Connected Rheumatology, PLLC does not reflect the opinion or recommendation of Connected Rheumatology, PLLC.**
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are you excepting Patients?
in my family AS is 3 woman to one male. i think that woman at a whole are dismissed. it took decades for my diagnosis.
I am only 52 and my pain is soooo bad. I read it has something to do with menopause too. Any truth to this?
This is so helpful. Thank you. I was tested in April with a ANA titer of 1:2560 and then a high dsdna (38). I am still waiting to get into a rheumatologist and feel lost and have gone from occasional joint pain to now everyday in small and large joints with fatigue and other symptoms. I've been told by family to also look into lyme disease. Would lyme disease influence these test results? Is a test for Lyme's warranted?
Hi guys i have not been able to get any info or answers on women who want to FREEZE their eggs not people who are PREGNANT and have lupus . I feel like im going to go crazy. i know i cant take mycophenalate and hydro but has anyone gone through the egg freezing process or has info my nephrologist and rheumatologist are of no use they are not up on the updates and are not advising me well.
Thank you very much
Right food will not lead to that symptoms ive been there twice thats why i study myself what food to eat
I had a positive ANA and when my NP tried to get me in to a rheumatologist, they were told the number from the ANA wasn’t high enough 😩 No appointment! I’m living with it but I understood what you meant in the other video when you mentioned isolation. I have life changing fatigue and … skin rash raynauds and GA. Burning and discomfort in my knees. I’m living with it because they all basing on labs rather than my symptoms too…😔 Would it help to get in with an internal medicine doctor?
What AI disease causes blurry vision for 7 months. ANA was a high abnormal number. My distance vision returned June. Now my up close vision fluctuates in variations of blurred vision. I have been to see 4 eye doctors. Age 75
I’m really sorry you’re going this. Scary and concerning. I’m almost blind from preterm birth and I’ve been dark and white cane dependent 2x in my life. And now at almost 60y.o. I have an Autoimmune Disease that will finish off my sight. Docs give me 3-5 years and that was 4 years ago. I wish to encourage you to continue seeking an Ophthalmologist and rheumatologist . Perhaps you could seek doctors close to or in large academic medical centers. Also perhaps you could ask around …that’s how I found my present Retinal Specialist who specializes in autoimmune diseases. My Retinal Specialist recommended my present Rheumatologist. They Both work collaboratively, but they’re not within the same practice. I spent 5 years seeing 20 docs trying to find answers. Everyone said the same thing, “I don’t know”. But I was certain I was sick. During those 5 years My PCP was gatekeeping me which deferred my diagnosis and allowed my condition to worsen a lot…. I blame that woman for bad practice. I was ttooo sick to realize what she was doing! I’m getting proper treatment now but it took quite a while and so much money. I live 6 hrs from Portland and 8 hours from Stanford so my dear husband drives me to EVERY appointment and there’s always travel and lodging costs. I wish to encourage you to keep trying to find answers … ”I don’t know “ is simply just an unacceptable answer. Please know you’re not alone in this medical mess. Many many people are suffering with you and are struggling to find answers as well. Prayers and best wishes to you.
What was your ANA number?
Very helpful. I just got results back and this helped confirmed I have lupus. Next stop is endocrinology
You said the way the do the test can influence a result…what does that mean?
This is so educational thank you for sharing this :)
Amazing, this presentation! Thank you a million times 🎉❤
HEY!!! Why did you skip right over Myopathy?????? I was on 10 mg twice a day for three months and now can hardly walk!!!
Great video thank you.
Masks don't work and probably cause more harm to the wearer.
Im 24yr old and getting lupus
Thank you! Very helpful information!
Wonderful video, thank you! Over the last few years, I've had painful wrists & hands in both hands, but worse in my dominant hand - mostly in the middle of the night & upon waking for a bit (only with movement) - but no redness or swelling. I only have minor pain when opening jars & using my hands during the day. I have been tested by a Rheumatologist and the only test that came back positive was the RA Factor- and it was only 15. My symptoms have not progressed over the year. I was led to believe I have RA, but am now questioning if it's actually just osteoarthritis - I know I have it in my spine, knee, etc - hey, I'm 65. :)
So helpful!! Thankyou for these videos very much appreciated
I just fired my primary care physician and my rheumatologist for dismissing my symptoms!
get a lawyer.
I have nerve pain all over my body it's affecting my eyesight I've lost 70lbs I also have constant ringing in my ears Tennitus can someone help?
There are sime natural supplements that you can take that helps Tumeric Curcuminoids 2250 mg sold by Qunol,check & see if can be taken with medication you are on as well as your PCP
Whenever I take Prednisone, the side effects are awful, such as digestive issues, and it gives me awful acid reflux, depending on milligrams taken, it gives me anxiety, but if pain is not controllable, I have to take Prednisone 🙃😒
Thank you for this video, Dr. Ortiz!
Iam in my 20th week ofy pragnancy but iam getting very bad leg crams iam really scared any lupus flares are getting appeared please suggest somebody
Thank you for your generosity in clearly stating this info!!
Important legal jargon of disability insurance companies: “Pre-existing condition” Where the insurance companies will try to get you to sign a “general” authorization form, to collect information from basically anywhere they want to try to cut off your benefits by saying you already had a disabling condition in the past. There should be a definition of the legal time period the insurance company can go back. Look in your contract.(mine was 6 months). The solution for the general consent of collection of information: If a disability insurance company asks you to sign a general authorization of collection of information form, take a pen and put a big “X” across the whole page and don’t sign it. Then, write on the page “see attached letter”. To clarify, these forms gives them the right to look up your social media accounts your banking information, or any social services that you are using, or you used in the past, all medical and health professionals etc… Some of those things are public (don’t put ANYTHING on social media when you have a better days, as they will use it against you!). On the denial of general collection of information letter, you write something like you refuse the general collection of information on your person, as it is an unreasonable, unethical overreach, and that you will approve communications on a case by case basis. If you have already signed one of those shady piece of paperwork that probably wouldn’t even hold up in court, you can write that all previous similar general collection of information forms are now considered null and void. That way you are not refusing that they collect information. Refusing the collection of information altogether, could be grounds to deny your benefits from what I understood. “Gainful occupation” Different for all insurance contract. Look it up. If your gainful occupation is deemed to be, let’s say 60% of your old indexed salary, and the job they want to send you to pays you only 59% of your old salary, you are still considered disabled! Read your contract! “Change of definition” Usually happens after two years. Where the insurance company hires an “objective” physiatrist to evaluate you and try to send you back to ANY other job, after being unable to perform your old job, subject to gainful employment above. “Claim present value” There are calculators online. Just search for claim present value calculator. That’s when your payments up to 65 years old would add up to 1 million dollars, but the insurance companies try to settle for $250k, because the insurance company calculates that you could invest that 250k and make that 1 million dollars by the time you’re 65 (and what are we supposed to pay our bills with while we invest that 250k?-Everybody’s question). Resolute legal on youtube are awesome to help you understand the whole process. Good luck to anybody trying to have benefits because they sure made my life hell. I’m making my life’s purpose to expose all their shady tricks so they lose money they trying not to pay me.
Thank you Dr. Ortiz for your generosity of always providing such critical and valuable information. I’ve learned so much from you, you are a true Angel and Hero! I’m a zebra with dermatomyositis mda5 pos, cusgings disease, psoriatic arthritis… it took years and years for diagnosis from being gaslit by being told I was “crazy “. I’m still waiting to appear before a judge to plea my disability case as I keep getting denied because all my old medical records stated I was having psychosomatic pain and symptoms that nothing was wrong with me. The good news is I have finally found my team of Angels and Heroes that are trying to care and save me now and I could not be more grateful to have them and your channel is so vital to the community. You helped me to see that I was not “crazy” and I never gave up! They are studying my case at UCLA ans it is a honor to be able to help Doctors to learn more and hopefully help future patients have a better prognosis and experience. One grain of sand at a time and we shall build a mountain! Thank you Sincerely
I’m starting the process of getting on long term disability. I have connective tissue disease and many related complications that have involved pulmonologist and other specialists over the years. I have very demanding job on the other hand, and a stressful private life with recent child loss and chronic and progressive disability of another child. Things took its tool and after more than 20 years of full-time work, I find myself unable to function and perform my job duties or any duties honestly. It’s a terrifying place to be but I am determined to do my best and fight one last battle of my life for my own disability rights and compensation, whatever that might end up being at the end. This video came at the perfect time, weird coincidence, but I appreciate it very much.
I have high crp and esr levels, just paid privately for ANA blood test to see what's going on. suffering with major fatigue, joint pain in knees, achy legs, pain in neck and elbows. hoping its not RA as I've already had Cancer twice. 😢
Usually if someone has Lupus then we most likely have ms.cause it goes with it,
I have MS.and Lupus,
Thanks for this info
I have Endometriosis. Than came problems conceiving. Than Lupus. Scleroderma. Fibromyalgia. Osteoarthritis. Now they i have mixed connective tissue. I am tired because it feels like i am sick since i remember 8/9 always something wrong. Oh also have Methyl gene problem. So there are no treatment options. They just treat symptoms and if I get extremely sick i get bunch of steroids pumped up that’s it. Now in my 40’s feels like giving up everything and forget about medicine 😢
Thank you
Low dose naltrexone is effective for sjogrens. Check out LDN research trust on KZread. Will give you information on LDN. My rheumatologist did not tell me about this . NHS U.K. will not prescribe this . A private prescription is necessary. LDN helps with the inflammation associated with Sjogrens . Dry eyes and mouth so much better now . On it 6 years
Cut to the chase if you’re busy and go to 11.45 of this interesting video There are huge amounts of money made in the manufacturing of medications to treat this disease so a cure as with so many health conditions is totally counterproductive to business and shareholders I strongly advise deep massage with oils and keep your hands active and mobile mobility is key avoid clenched hands for long periods also read comments from people who are successfully treating themselves Good luck
No one single video on KZread tells/explain the Difference a Negative or a Postive outcome AFTER taking this test. How hard is that?
I know this doesn't relate to getting good sleep and darkness but the opposite--bright light is also an issue. A note to all rheumatologists in general and their office lighting. One of the worst and last appointment to a former RA (here in San Antonio) was when I was left in a waiting room for 45 minutes with a ceiling full of fluorescent lights. I had to sit there with my sunglasses on. For some funny reason the field around these kind of lights can affect the immunocompromised. My suggestion is lowering the intensity of office ceiling lights and perhaps use lamps. Plus, I always carry a hat, sweet dreams!
Thank you Dr. Ortiz for discussing the importance of sleep. Yes, getting good sleep is key, it really makes a huge difference, dark and quite is a must. My husband likes sleeping with a fan blowing. I have Sjogren's along with the dry eyes and mouth. A fan blowing on me dries out my nose, mouth and yes, even my eyes closed shut. We sleep with the fan on his side and two pillows stacked sideways between our two regular head pillows. The two stacked pillows divert the fan wind from landing on me. I also sleep with an eye mask and ear plugs, yeah it works.
I have swan-like deformities, Heberden nodes, edema, swelling that won't go away on my legs, hands, and ankles, flaky skins on my legs, my left side is much larger than the right, arthritis, and I am using a walker and have a power chair. My CCP came back as a weak positive 23, my RA Factor came back as a 47, but my ANA came back negative. What does this mean?
So rest and take ibuprofen. That's really not helpful. People have jobs and kids and can't just sleep all day. Plus we are all basically living on ibuprofen already. Just another well meaning but completely patronizing lecture that ignores the reality. How could you maintain your career as a physician with these recommended strategies?
Know one believes me,is what i think,what doex ASA 2 mean please?
Why did you feel that you should take Dr "Jones" off NSAIDS if they were helping him???
The video has value but the music is toooooo loud in the background and is distracting. Thx
Based on the results of many blood tests (8 vials) and my physical symptoms (pains in right arm muscle, (I am left handed)), shoulders, back of right hip and behind both thighs, I was diagnosed (by my new Rheumatologist) that I have PMR. I do not like taking medication. If I was your patient what meds would you suggest I start taking that would have the least amount of side effects. I prefer to only take over the counter stuff such as Tylenol, IBU, and/or Aleve. If these pills work to remove pains in my body, is there any reason that you can think of why I should be taking some other type of medication? Please let your response be based on the premise that you agree with the diagnosis of PMR. I am just asking for your opinion and realize you are not my doctor, etcetera, etcetera. Thanks.
Thank you for this video..and ALL of your videos, they remind me how important it is to care for myself and what to do and not to ESPECIALLY when I’ve reached my physical & mental limitations
EXCELLENT
Over the years I have noticed that my body doesn’t tolerate cold / cool air around me , there’s no way I would get to sleep in a cold / cool room 🤷♀️ It actually keeps me wide awake 💁♀️ My body , room & bed must be warm , cosy , toasty , heaps of layers 🤷♀️ The cooler / cold weather is the worst for me , my body goes into severe pain , inflammation , tension , shock ! 🤷♀️ I cannot even breath cold air I get sinus & head colds ! No wonder bears hibernate during the winter 🥶 25 + is comfy & relaxing 😌 Ty
Don't feel bad; I sleep with an electric blanket EVERY night, no matter the time of year.
@@novembers oh really ? Wow , so it’s not just me lol 😅 😁
Do you have Raynauds Disease? Read up on it and it's effect with autoimmune disease
My body tells me in advance about changes in the weather. And like you I absolutely can’t be near air con. I carry a blanket… everywhere!
@@lenorewynne8702 ty , I have looked it up , I don’t think I have as only a few of the symptoms are there , but worth talking to the Dr about one day ?! 🤔 Very king of you to suggest 🤗 💜