It's horrible when you know something is very wrong,but nobody will listen to you.

@ketovorekandi

2 ай бұрын

Yes it sure is!

@beccasteele6874

Ай бұрын

And worse when you think you could do these things but you must not be trying hard enough

@ketovorekandi

Ай бұрын

@@beccasteele6874 yes! It’s an awful feeling

I am so sorry for your experience....I had tears in my eyes... recalling my daughter's childhood when I knew something was wrong with her and I kept being dismissed and told I was paranoid, over-protective etc because she was perfectly healthy. I finally got her primary pediatrician to listen to me and he referred her to a cardiologist and at 15 years old we found out she had been born with congenital heart defects and because they weren't diagnosed she has a heart/lung disease that has no cure. She is on oxygen and takes medication one is a IV medication through a central line. It is so sad that doctors do not listen and just brush you off... it still happens to this day with my daughter. You have to be so aggressive. Thank you for sharing your story.

@ketovorekandi

3 ай бұрын

I’m so sorry to hear about your daughter! It really does suck when we are just brushed off and people think it’s all in our heads.

It’s very encouraging to hear something so mysterious finally got figured out. It’s like you found the needle in a haystack! It gives hope:-)

@ketovorekandi

3 ай бұрын

I am very grateful to find out! It really helps me to be able to move forward!

Wow! I can’t believe the attitude of your first neurologist! This is important information that needs to be passed on to your children whatever the outcomes were.

@ketovorekandi

Ай бұрын

I totally agree!

I can't even begin to tell you how identical are stories are, but your attitude is so much better than mine has been 😂 No wonder I have been brought to your video, it has been a huge encouragement. Thank you for sharing your story!

@ketovorekandi

Ай бұрын

I am glad I could offer some encouragement. Were you diagnosed with SMA?

I am so sad that you had to experience all of those walls. I have had a similar experience except that I have an inflammatory arthritis and a number of other autoimmune diseases. It has made my life very difficult and at this point I cannot work. However when it first hit I had a lot of doctors either blow me off, or tell me they could see something was wrong they just couldn't tell what it was. So now I know it took 10 years to find out and it's progressed to the point I can't work. Other members of my family have the same thing and all of us went through phases where we just couldn't deal with the doctors again, or more tests to try to figure out what was wrong. I just want people to know, don't give up, keep on trying for answers. It's worth it, because you never know, there may be a solution out there somewhere, and if nothing else, you will have peace of mind.

@ketovorekandi

Ай бұрын

Sorry to hear of what you went through. You’re right tho, never give up! 💕

I am so sorry. I empathize with you and I can tell you that I can understand and relate with you. I had been going through that too myself. This was so me. But, I was diagnosed with mild several palsy and and depth perception. I am so sorry you had to go through all of that.

@ketovorekandi

2 ай бұрын

I’m sorry to hear of your experiences as well. How long did it take for you to get diagnosed?

@heatherfling7820

2 ай бұрын

@@ketovorekandi I was diagnosed in my early adulthood. No one ever told me what I had but. I’ve always had to wear glasses and had weakness through out my body and had an hearing loss in both my ears and couldn’t ever run full speed or jump and jump off of things. When I would run I couldn’t run fast or my legs would give out on me and would be painful to get up.

@ketovorekandi

2 ай бұрын

I can definitely relate to the running part!

Same, and it was really hard being told nothing was wrong.

@ketovorekandi

Ай бұрын

💕❤️it is hard to hear. And when we get that info, we don’t know what we are able to do to help ourselves.

You come off as such a sweet person. You definitely have a wonderful attitude. I've subscribed, hoping to get good news about your condition in the future. Much love until then.

@ketovorekandi

3 ай бұрын

Thank you so much!

I love this! thank you for sharing

@ketovorekandi

3 ай бұрын

Thank you 🤜❤️

amazing story.❤

@ketovorekandi

Ай бұрын

Ty for choosing to spend some time lit🙏💕

God bless you hun x

@ketovorekandi

Ай бұрын

Ty, Maureen ❤️

I had similar experience

❤GOOD ON YOU💐

@ketovorekandi

3 ай бұрын

Many many thanks

Don't hold a grudge, but never forget how you were treated. And good for you for moving on all of this by yourself. Good job.😊

@ketovorekandi

Ай бұрын

Ty. I appreciate that💕

I love you Kandi. 💝

@ketovorekandi

3 ай бұрын

I love you too! ❤️😘

Hi, I am pissed at Drs. You were in a world I know too well. I thought SMA came on early in child hood there is a KZread channel called Squirmy and Grubs and they're an interabled couple. and Shane the guy has SMA but he is, vsf I'm severe I mean he's in a wheelchair and the only thing he can move is one of his thumbs and he can move his head and he can obviously talk and he is so witty and he wrote a book called laughing at my nightmare. He also started a nonprofit organization for people with SMA. So by watching your video I learned something that it's a spectrum am I right? because you're still walking you're not in a wheelchair. I'm curious what symptoms do you experience now? Thanks for sharing your journey.

@ketovorekandi

Ай бұрын

Yes, there are different levels and severities of the disease. I have watched Shane’s channel and do enjoy it. ❤️

Ruth here, listen to Ken D Berry MD, he talks about diet, l really hope you listen to him, he backed up what l had figured out to degree

@ketovorekandi

Ай бұрын

Good morning, Ruth. Ty for the recommendation for Dr. Ken Berry. I do love him and will continue to watch his videos.

I am so sry Our society is such a failure, esp with sick women. They are dismissed far more often than not and FAR more often than men. I am not asking u for this test. I’m telling u to get it for me! Ur MY dr. I’m not UR patient. U work for ME. That’s how I have to be.

@ketovorekandi

2 ай бұрын

You’re so right!

God bless ❤🫂✝

@ketovorekandi

3 ай бұрын

Thank you 💕

I had gallbladder disease,and changed my eating habits, because of debilitating pain when I ate. Finally had it removed and still kept the same eating habits because I know from trial and error,some food is fine,but some makes me really sick.

@ketovorekandi

2 ай бұрын

Does eating a lot of fat make you sick?

@myaccount9498

2 ай бұрын

What kinds of food make u sick?

I have some muscle disease with painful weak muscles.My doctor says fibromyalga.I have dizzyness with it.I wonder about if I have MS.

@ketovorekandi

Ай бұрын

Sorry to hear that you are dealing with that. Have you started to eliminate processed foods, carbs, and sugars from your diet?

@nadogrl

Ай бұрын

Absolutely! Start on Keto and/or very low carbs.

@ketovorekandi

Ай бұрын

Yes!!

@chifreak6

Ай бұрын

Omg me too!! Rheumo says fibromyalgia. But can't walk straight line, bad vertigo, depth perception is way off, super clumsy, always knocking stuff over, etc...EVERY DAY!!! My body literally locks up if I go for a walk. My doc is great at gaslighting. Just wants to dispense pills. 7 years been this way. Hardly can drive. I go now where. Life sucks. 😢😢

@ketovorekandi

Ай бұрын

Ugh. That is the worst. So sorry! I hope you find answers 💕❤️

Wow, what a story! I thought I was diagnosed late at 23. I’m type 3 and 56 now. Very similar stories. I also am keto/carnivore. Thanks for sharing ❤

@ketovorekandi

3 ай бұрын

I am so glad meet another SMA warrior that is doing ketovore! How long have you been at it?

@liswoods9

3 ай бұрын

@@ketovorekandi started keto 6 years ago but been mostly carnivore for the last year. I’ll never go back to the SAD way of eating. I wish I had known about it earlier.

@ketovorekandi

3 ай бұрын

@@liswoods9 I totally understand. I wish I had LISTENED to it earlier as well.

@xxxyyy1880

3 ай бұрын

Doesnt carnivore diet cause having less energy because lack of carbohydrates? In normal healthy person this is easily measured and common effect that is well know. For someone with musclular disease the effect might be even bigger since body has less strenght. Of course carnivore is good if youre trying to lose weight but being constantly in it might not be that great...

@liswoods9

3 ай бұрын

@@xxxyyy1880 the carnivore diet gives me more energy! Because I don’t eat carbs, I don’t use glucose for energy, I produce and use ketones for energy. It’s a beautiful thing. I never knew there was another energy source available. I also make sure I keep up on electrolytes. You can’t just do carnivore without understanding the science behind it. I may also add, it may not be for everyone, but I know it is for me.