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

[rideabike]

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.

[rideabike 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. 😃