Multiple system atrophy??

[Mermaidia11]

Hi everyone well I think I might have MSA and don’t know what to do - about any of it!

So had MS for a long time - 2odd years, but in 2013 my balance just went, culminating in me falling backwards and hitting the back of my head on a stone table. Had s brief stint in hospital and never really recovered my balance, and everything else declined at a rate of knots, culminating in me being diagnosed with cerebellum ataxia in the same year. The hospital noticed my low blood pressure plummet when I tried to stand ...

This is despite regular balance exercises, good food and a raft of different supplements..

Since then, everything has got worse very quickly, no matter what I do. But this has been overshadowed by constant uti - which I assumed were making my other symptoms worse. After 5 months of various different antibiotics I finally seemed to get on top of them, but my Kidneys ache constantly and I’m not continent day or night.

I also use an electric scooter indoors and out, but I rarely go out now because I have no spatial awareness, no balance and feel sick and dizzy all the time. My eyesight is bizarre and that makes me feel sick too...eating is now something I do to stay alive... I never feel hungry or thirsty...

Even when lying in bed I feel like I’m going to slide off the back of it, even though it’s up against the wall

My neck really hurts most of the time , no matter what position I’m in.

I choke regularly/ it doesn’t have to be good or drink ; can be my own spittle ?

It’s scary and I have to be very careful, got aspiration pneumonia last year and the actual axphixiation caused me to see stars and black out.

I live on my own with contact with my children a few times a week and every other weekend. It kills me to not be able to do all I want for them, and for them to see me like this and not live with. me full time, but I feel like I can barely look after myself, never mind them ..

i can barely stand up and when I do, I do the crazy jumping which knocks me off me feet. I’ve got a ridiculous tremor down my right side ; I can’t do up buttons, pick things up,crack an egg, or even tie my hair in a bobble sometimes. My fingers are numb and shaky in the day, with pins and needles at night and a permanent feeling every muscle being stretched...

For the last six months I’ve been able to crawl around upstairs, but now I keel over and just don’t have the strength, I can manage; barely but don’t know how much longer I will last.

I can sleep for England and never feel refreshed, and that’s all I want to do - I’m beyond apathy. I’ve felt myself stop breathing many times.

I can’t control my body temperature at all, so I fall asleep freezing and wake up boiling and aching. The slightest sun beam kills me and the slightest breeze send me into shivers.My feet and torso burn constantly and I feel like I’m in a vice; head and ribs ....

I don’t feel myself at all and there is no respite day or night...

I feel like I have ms, cs, dementia, Parkinson’s and alziemers!

I’m only 45 and not sure how much longer I can keep this up.

I saw a post here from a lovely man who had been diagnosed with Parkinson’s, then cerebellum ataxia and then MSA and as soon as I read his post and symptoms; I identified with all of them...i spoke to the MSA helpline and they were very nice. I’ve got an appointment with the neurologist in a few weeks. I’m terrified basically..

[Rhyothemis]

You may want to look into supplementing with MitoQ and PQQ. Perhaps D-mannose for the UTIs.

My father had MSA and found Lion's Mane to be helpful (I wish I had known about the other supps back then).

[Mermaidia11 in reply to Rhyothemis]

Thank you for responding, yes I’ve tried those three thanks

I have not tried lions mane, so will look into it, thanks

[Yanno]

Hello and welcome albeit it's a shame you have to be here.

It sounds like you have a whole stack of issues and symptoms, my heart goes out to you. You say you have spoken to the MSA helpline, have you spoken to an MSA Specialist nurse - there will be one who covers your area as you're in the UK.

I see you are seeing the neurologist soon; that will be a good place to try and get some answers. The trouble is, we all tend to just gush out a load of things that are wrong when we see a specialist. I would carefully list each and every 'symptom or issue' you have and how long you have had them. It would help then to list them in the order of how bad they affect you. However calm and serene the neurologist may appear on the outside, like a duck will be paddling like mad out of view to get each and every appointment done as quick as possible - they are under huge pressure. Plan therefore to make the most of your visit so afterwards you don't say "damn I intended to say this and forgot".

Your neurologist may be different, but our experience is that s/he is unlikely to have much to say about UTI's. S/he may be able to refer you somewhere else for help. My wife also suffers badly from repeated UTI's and we have found nothing that helps including Hiprex and D-Mannose, both of which are spoken highly of by some.

Good luck, take care, Ian

[Mermaidia11 in reply to Yanno]

Thank you for the kind and wise response Ian. You are right with all you say and have my list ready. Yes, I’ve spoken to a lovely msa nurse, who was going to speak with my GP, but then a neurology appointment landed..

I appreciate that the neurologist won’t be able to help with the UTIs - I’ve been told already by a urinologist that my only option is a supra pubic catheter, which comes with a whole host of issues , so really don’t want to go down that road.

I’m sorry your wife (who you clearly care for so well), is plagued by uti as well . It’s sends you nuts and the antibiotics play havoc with your guts!

Does she use intermittent cathetisation? It’s the residue left which causes an infection to culture?

I do, but it’s getting much harder with shaking hands, but emptying fully, being on a profilatic and washin before every use seems to have put them to bed for now.., it’s just living with a bladder like a sieve is hard and the alternative just as bad ...

(And if she has a profilatic daily antibiotic, then a probiotic will help keep things balanced)

Thanks again for responding and good luck with your journey with your wife x

[Paul_and_Sue_Wood]

Mermaidia

Sorry to hear of your issues at such a young age, but glad you're here to shout, ask questions, moan and see you are not alone.

MSA is a diagnosis by elimination and it affects the each sufferer differently and at different rates.

Your symptoms sound typical and if you are talking to a neurologist then you are on the right route.

Ask if the consultant knows about MSA and never assume any professional knows about it, both Ian and I both educate any professionals we come into contact about MSA as it is not common. If your on your own SHOUT SHOUT SHOUT to anyone around you for help including social services, get carers to help you in your daily tasks if you've not already.

Get a neuro nurse involved and get as many aids as you can.

My wife is now 10 year in from the start of what we now believe is MSA and can no longer walk, eat, stand up and all the other daily things you do....but she can still moan at me!!!

Be strong, adapt and seek help.

Paul & Sue Wood

[Mermaidia11]

Thanks for getting back to me with wise and heartfelt advice!!

I don’t want to come across all neurotic, or that I want a diagnosis of msa, but I think things may be more than ms and ataxia.

Nor do I want any dirty drugs or a big fight for help?

I guess I just want some answers really - every day I want to do more than I can and every day I don’t and cant.

.

it’s like I’ve given up, but no one told my brain?!

Arg! Invidious position! Good luck with your challenges and the very best of wishes, thank you x

[Pamhill]

Did they ever confirm your diagnosis?

[Mermaidia11]

Hi love, yes they did a few weeks ago after an MRI

The neurologist sent me to a mood disorder specialist , who sent me for the mri So on my birthday a few weeks ago I got a four line letter confirming that they had found “inferior frontal silent stroke inflammatory lesion “

No follow up appointment, no advice, no intel! Arg. I give up!! Thank you for asking

Hugs

[Mermaidia11]

Movement disorder specialist I meant!

(Although my mood is thro the floor

They did offer me some put up and shut up pills - sertraline?)

Thanks everyone here x

[chester2107]

so sorry to hear , yes and such a young age

my dad had msa , he sadly passed in march though , but he was 83

i don’t think there are any particular drugs that help , my dad wouldn’t take anything

but he did take a mild anti- depressants which helped a bit.

so glad you have contacted msa trust, they are very helpful, but also please let your family know if you are struggling , and anyone else who can

much love

elaine x