I have not been diagnosed as yet. A neurologist I am seeing is committed to finding out what is causing the symptoms. I was diagnosed with large fiber polyneuropathy with ataxia in 2021. Since then dysautonomia has presented itself. Exercise for balance has really helped but unfortunately my ataxia is not visible now. Wobbly walk seems to have disappeared but sometimes sneaks back but in a different way. Wondering if balance exercise and walking has helped anyone else.
A turn of my head can make me feel like falling over, (loss of proprioception), so that is still the same. I have a lot of problems with memory and cognition too. The cold hand syndrome is something I live with as well as Reynaud's syndrome and lack of temperature regulation. Now my heart has got an arrhythmia and I just wore a Holter monitor for 24 hours. I got Covid 2 weeks ago and passed out from OH, the ER doctor said. So bladder, constipation and now this seems to point to dysautonomia. Looking back I think all of this started around 2015 so that's some time ago. I can pinpoint when most things started.
Passing out like that scared me and I don't think Covid was the ultimate cause. Maybe the Holter monitor will tell the truth. I actually suspected I had MSA about 5 years ago and then shelved the idea. Now I'm thinking maybe? There are a lot of brave souls with this and it would be nice to connect if indeed I have it. I am a 72 yo female living in Saskatchewan Canada.
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Hi. I'm 52 years old in England. I've had msa for a couple of years although only got the diagnosis in June this year. Anything you need my email address is thedjsupreme@aol.com Good luck
Hi, and welcome to the forum. I share many, but not all your symptoms and I too am chasing the elusive definitive diagnosis. Not knowing is so frustrating. Well meaning people think I am indifferent to the issue because I can’t answer their simple question of “what’s wrong?”
Regarding Covid, what I can tell you from experience is that any infection amplifies my symptoms. As does a hot bath. With cold hands, the attraction of a hot bath is compelling, but I will suffer from it for a couple of hours.
patients are advised to avoid hot baths or weather as temperature control may be up the creek..
there is no definite diagnosis except post mortem..only 'possible' or 'probable' then please try not to stress about it. find a formular which satisfies your well meaning friends
Asking for a post mortem in my current state, just to get a diagnosis is probably a little excessive. Good to know about hot baths, that’s another pleasure I am denied. I did notice how I appeared to ‘cope’ with higher temperatures this year. I put it down to umpteen business trips to India had acclimatised me to the heat. Reality was my body probably wasn’t reacting the way it should.
I will tell my friends I am drunk, that is probably what strangers think when they see me out and about.
I believe you’re right with acclimatization. I’m getting used to the hotter summers. I challenge my balance limits as well….as long as I know where my feet are first and keep focused on the object and don’t look around I think it’s helped.
Hi FredaE, I am aware there's no definite diagnosis til 'after' and I know of the terms "possible and probable ", I have been diagnosed as possible MSA-C,.
My question is, is it "possible" first, then "probable " after they've eliminated other things??
When I received a clinic letter stating "possible MSA-C", I took it literally, like it was a possibility I had MSA-C, but now I think 🤔 it means yes I have, drs just can't 100% diagnose it!
Is that other people's understanding of possible & probable too?
i tthink it means you seem to have msa now but need to wait and see what happens next. the next symptom to appers may confirm the diagnosis or contradict it and the next new one may change it again.
it is hard to live with but all are equally incurable and at least you are not shuttling between dis.eases which may be curable or not.
possible may well turn out not to be msa but probably is near certain
I think I got my head around it last year,but then the specialist movement disorder Neurologist has ordered more tests and scans again as it might be something else! Now I feel I'm back to square one, having started this diagnosis process 2 years ago, with initial symptoms 4 or 5 years ago. it's so frustrating 😑
My neurologist who is an assistant professor of neurology doesn't handle movement disorders, whose specialty are few and far between here. I'm fortunate to get one at all. He has me referred to ear, nose, throat specialist for swallowing but I already had a fluoroscopy in 2017 that showed decreased tongue based movement and then this year had a gastroscopy. He might not have this info.
I don't know what my GP has sent him. He didn't seem to know about the ocular dysfunction test results and I'm wondering if the GP sent him the recent report about OH and passing out from it. She seems to question the dysautonomia theory and he may also. How do I go about this? I have not heard back from my GP for over two weeks regarding Holter Monitor results. I'm either not able to communicate with doctors or say too much. Anyone have any ideas how to go about this? I feel like he's beating around the bush but without direction.
When I got COVID my MSA - C symptoms were extreme in terms of my ataxia. I know others MSA sufferers that their blood pressure was terrible. My specialist said it was not uncommon at all that COVID seems to push all types of chronic illness symptoms. Patients who had been managing their chronic illness for decades such as diabetes, Parkinson's, and Lupas often got hit with symptoms escalating. My ataxia was extreme and ability to control my feet - but it all went back to the prior status after COVID finished with no change. So maybe this is what happened to you. Though some specialists say just a coincidence... In my case 2 months COVID I have not had any incidents like I had during that time. I now look at it as insight into perhaps the future when I have progressed that is what it might be what it looks like - who really knows.
The diagnosis journey is the worse type of roller coaster - I can say that the clarity of having a diagnosis - shocking as it was - was great. I could plan and get to work on getting a team around me.
If you have been battling this since 2015 then you are probably going well. But each persons experience is individual. The issue being that it is a collection of aliments that each on their own has to be dealt with needing specific expertise whilst weighing up the consequences of treating it on the other symptoms/problems. For me it was getting someone to manage a holistic view of all of the issues once I knew what was wrong with me. My peace of mind now comes with a brilliant primary GP along with a movement disorder neurologist that is on top of everything. Finding this person can be difficult - my GP is putting in the hard work of getting "expert" and I see her regularly every month and we monitor them all. Fortunately the first neurologist I went to said I am not the right person....and sent me to a movement disorder one - though I needed to travel t see them.
For me exercise and strength building, nutrition I know have helped manage symptoms - for how long ahead I don't know. I know that when I don't do exercise that my symptoms get worse especially my balance and control of my legs and arms. Turning is the worse.. I work on how to get around my issues. Thinking about a recumbent exercise bike next - interested if anyone finds them useful. Bit worried about falling on a treadmill. I live in a rural area so no footpaths for walking and it is getting a bit tricky now.
I had got to use to in my life of a medical person being to got expert as each illness/condition occurred in my life up until now.( all as individual events) With MSA though it has helped me to try and become really knowledgeable on the condition and the large range of possible symptoms so I report in on them as soon as I think something might be happening.
Anyway I have digressed from your questions and look forward to connecting. Good luck with it all.
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