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JohnWBurns (@johnwburns)

Autoimmune Diseases and Fatigue

Autoimmune Diseases | Last Active: Aug 16, 2021 | Replies (501)

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@rivergirl8243

In June of this year, I flew to Mayo Clinic in Minnesota … yes during COVID 19, had multiple tests and etc. with my care team and Neurologist, only to be told to go home they couldn't find anything medically wrong me, this doesn't sound like Mayo. Now they want me to return, I suppose they needed more than 4 days and multiple tests with me. In the meantime, I've seen several neurologists and primary care in my state. No one seems to know what my problem is. For several months my gait and balance have been off, I look like I'm drunk when I walk. My left leg and side are weak, I've fallen several times just trying to turn around or back up. I'm extremely fatigued. Larry holds my hand when I walk. I have degenerative scoliosis but have been told (by Mayo) this isn't the reason for my issues. I'm old but this should not be part of aging. I take no medications, My question to the group: does it sound like Ataxia? Should I bite the bullet and return to Mayo?

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Replies to "In June of this year, I flew to Mayo Clinic in Minnesota ... yes during COVID..."

@rivergirl8243 Have you seen your cardiologist? Or Ear Dr My balance was off but no weakness on my side I suggest you have a battery of test by your car diologist with the one side weakness

@rivergirl8243 – I know the frustration you are going through – beyond extensive workup and testing- and nothing is found and you still suffer. With left sided weakness I doubt ataxia. It sounds more like a central nervous system problem – brain or spinal. I assume you have had a variety of MRIs and CTs. No sign of MS or other degenerative disease? Stroke? Viral illness? Lyme?
I was once in your situation – deciding if I should return to Mayo or not. What made me decide to return was I did not want to start with someone new. They had tested me for 4 years-all results were there. I lucked out this time- new scientific knowledge pointed to a specific autoimmune illness and I could be treated finally.
My advice is to go. Do you have access to your Mayo records online? I would review them myself from time to time along with the visit summaries from the doctors. This way you refresh your memory of everything that has happened.

@rivergirl8243 before you get set to return to Mayo, ask them to be specific about why you should return. Have they found some answers, could this be taken care of locally? Trips to Mayo are not cheap so you need to know if the benefits are worth it. Take your recent medical records with you. Yourself first.

Your post reminds me of me in a way. When I walk, I walk like I'm drunk. I stagger. Sometimes it looks like I'm going to fall. I had a chiropractor tell me one of my sides is ten pounds heavier than the other. He had me stand on two scales, one foot on one, the other foot on the other and stand still and shut my eyes. It sounds crazy but that's the verdict. I know I have severe spinal stenosis and sometimes I have a huge pinch in my back and that makes me walk crazy also. I am not signing up for a rod, plate, screws and a fusion. My ears have been full of wax and my ears infected this past year which I think makes your gait off also. I am sending love to all of you who are in pain–whether it is pack pain, leg pain, neck pain, people pain–God be with you.

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