Anyone have late onset msa slow progression with ataxia and autonomic disorder?

My symptoms started around 2015. First loss of proprioception and internal shaking, head bobbing, not ET or Parkinson type. Then came digestive, swallowing and gastroparesis with very tight mid body pain after eating. Ataxia and autonomic dysfunction and ocular motor problems, specifically slow saccades and visual spatial deficits….about the same time starting around 2017 and constant urine retention just caused a UTI.

Progressions has been slow but obvious…. to me. Neurologist diagnosed large fibre polyneuropathy with ataxia. No ankle reflexes (Achilles tendon) I’m pretty sure it’s more than that. I’m 73 now so this has been going on for almost 10 years. I function as best I can, have no slurred speech and ataxia isn’t really bad. So I walk slower like I have brakes on all the time. Being too active makes things feel worse and can cause neuropathy but feet are not painful. It doesn’t really feel like neuropathy unless I wear tight shoes.

Will be getting some tests for autonomic issues in the next 6 months, I hope. I had to move to another province to get the health care I need. I just feel really sick all the time and wish I knew what is wrong. Digestive problems probably bother me the most with fatigue coming second. Trying to eat small amounts of food, dealing with constipation all the time and tight uncomfortable band of pain is draining me. Endoscopy and colonoscopy showed nothing. U/S showed nothing wrong.

My question is has anyone else had a slowly progressive type of msa starting in their early 60’s? If you could share what you went through it would help. Thank you 😊

[Scragger]

Hi there rideabike

I can’t help you as much as I would like. My wife is in a fairly similar position but in a different age group. She first had symptoms when 77 years of age, 2 years on and the symptoms persist with no definite diagnosis. One neurologist was leaning towards MSA - Parkinsonism. Another said he saw no clinical signs of MSA and to just monitor her condition.

I noticed head bobbing two years ago followed by right hand movement (fingers moving in a scratching motion). This is different from tremor. She has axinol peripheral neuropathy, ataxia, drooping eye, incontinence x 2 which was pre existing but in my opinion has worsened, swallowing issues, daytime sleepiness, as well as other pre existing conditions.

The Neuro ophthalmologist reported there was no Myasthenia Gravis, so that was good. The neurologist dismissed the incontinence as pre existing. Sleep apnea test diagnosed mild sleep apnea but a month trial of CPAP was not successful. The neurologist saw no signs of head bobbing (which is very intermittent) so he dismissed that and he put the hand movement down to a possible form of stereotypy. Tests for swallowing issues showed a reflux problem (already being treated) and that seems to be in abeyance at this time despite some uncomfortable issues at home. So you can see it’s not all beer and skittles getting a diagnosis.

We are seeing another neurologist in the hope of getting a positive diagnosis, for peace of mind if for no other reason. I know this is not within your long standing period of time but it does show the difficulty in getting a positive diagnosis, even when there appears to be definite and obvious MSA symptoms. Good luck.

[Hidden in reply to Scragger]

Thanks very much for your answer. I can see there are so many variables within msa, even amongst those diagnosed. Interesting symptoms that she has similar to mine. I’ll know more if autonomic test show positive. It will be awhile. The neurologist said it was cerebellar type ataxia but not in the cerebellar itself. I should be knowledgable after all the research I’ve done but it’s a wait and see kind of thing. Tell her everything I do makes me tired too. B vitamins seem to help for that. I wish you both all the best. Thanks again for sharing. 😃

[Gill-C]

You are describing my symptoms and their progression exactly. Not heard anyone else do that.

Sadly I’m no help though as I’m 65 now and was diagnosed with MSA 2 years ago, although I reckon I’d had some of the symptoms at a low level for some time before that.

No solutions I’m afraid. It is grindingly exhausting isn’t it?! Thinking of you from London (England). Gill x

[Hidden in reply to Gill-C]

Thanks Gill. For you to take the time to share that gives me a boost to pursue the autonomic testing. It’s quite far away and I thought I might cancel it… not that I have a date yet. Everything takes time but I’ll go through with it now. Thanks very much for your reply. I am sorry it has to be that way for you as it is “grindingly exhausting”. What a good description. Linda

[Gill-C in reply to Hidden]

Oh do go through with all tests that are offered, Linda

. I waited nearly a year for autonomic testing and it’s always tempting to think why bother as no-one can do anything, but the autonomic testing was super thorough and interesting. Tests on balance, stress and temperature response and a whole bunch of other things that I now can’t remember.

Yes nothing much changed as a result, but each problem ended up with its own expert (I’m at the National Hospital for Neurology and Neurosurgery).

trying to keep ahead of MSA by treating each symptom as it arises is really all anyone can do and I’m afraid it’s a journey full of unpleasant surprises!

It was weirdly reassuring to find you describing symptoms that I recognise so well and similarly the absence of seemingly typical symptoms such as impaired speech.

Do keep me posted with “progress” as I will you

Gill x

[Hidden in reply to Gill-C]

Your support means a lot since I’m alone. I moved to the province where the autonomic clinic is and it’s closer but may still have to fly instead of the 7 hour drive. I agree, the benefits will be there long afterwards. It’s always an adventure to leave town and I love driving, except in winter.

[Hidden in reply to Gill-C]

Maybe you or anyone who reads this can help me with this Gill. I have always wondered about loss of proprioception (included in the ataxia diagnosis by the neurologist). This is how it affects my life but perhaps others? There are no normal people I can discuss this with because they wouldn’t understand. So I have to put this out there.

It seems to be a part of ataxia but what most bothers me is no matter how many times I drive a certain route it always seems unfamiliar although I do get a general idea of where I am. It’s the nearest I can come to describing the feeling of always being lost and spaced out. I can find my way around but when I come from a different direction on the same road it’s like I’ve never been there before. I have to use buildings and road markers to give me clues but even that isn’t foolproof.

Google maps is my go to but it’s getting harder because my right and left seem befuddled and I make lots of wrong turns and constantly pull off to see where I’m going. Is this common with ataxia? I know I’m making it sound like my driving is unsafe but I’m really careful to look at the cars around me (7 years of school bus driving) and if I have to pull off it’s in a safe place. I always map out my route beforehand. It’s usually best to have each turn written out though.

In once flew across a few provinces and was so lost I asked someone how where the ocean was from where we landed. It was so bizarre I laughed afterwards and knew perfectly well where the ocean was on a map but in my head I couldn’t place it. It was like I needed someone to confirm where I was in space. Crazy 😜 but true.

[Gill-C]

That’s very interesting. I had always understood the loss of proprioception as relative to my perception of my body rather than the wider picture you describe.

A quick google comes up with the interesting concept that, if the sympathetic nervous system is engaged - say if you were getting stressed about your route - then proprioception is impaired.

Gill

[Hidden in reply to Gill-C]

I was diagnosed with large fibre polyneuropathy. ataxia is from input into the cerebellum not the cerebellum itself. Found this article.

From SpringerLink link.springer.com/reference....

(In a nutshell it says)

Peripheral Neuropathy/Neuronopathy

The most pure form of Proprioceptive loss is disease of the large myelinated sensory nerve fibres, either in their axons or their cell bodies (see Section on Large-Fiber Sensory Neuropathy)

I need to read the whole article and thanks for the motivation to do the research. Haven’t seen this one before and had no idea there was this loss of sense of space from neuropathy. The plot gets thicker…hah!

[Hidden in reply to Hidden]

This Page link didn’t work but I’ll find it.

[Gill-C in reply to Hidden]

It’s a whole new career becoming your own expert! 👩‍🎓

[Hidden]

Thanks......I'll have to do more research. Something's impaired that for sure!