Multiple System Atropy

Just discovered something called Multiple System Atrophy or MSA. Some of the symptoms are familiar in addition to the ataxia symptoms which is mentioned under “Problems with co-ordination, balance and speech”. Does anyone else have these problems? I’m only wondering as there’s no cure so there doesn’t seem much point in me getting a further diagnosis.

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I think i’m a MSA person - MSA-c or MSA-p (not sure)

Is MSA genetic? Did you get any genetic testings?

No - but it won’t be genetic. I got ataxia from a brain tumour. If I have MSA, it’ll be from the tumour too.

Hey cross_eyes,
Can I ask, what sort of brain tumour? I have an benign astrocytoma for which I’ve required a few surgeries. I have some intermittent symptoms that were given a title by a neurologist as Parkinsonism in nature, but I was never told the abbreviation M.S.A. I was told by the neuro that there are exercises and treatments that maybe able to help but that often progress is very individual as the location/size/type of tumour can have a huge impact.

I have tended to minimise/ignore symptoms because eventually they settle, but I have noticed it seems to be taking longer to settle. It’s my balance and coordination that I’m noticing primarily. But then when I get tired symptoms can/do increase. When I’ve tried to explain some of the weird symptoms some medicos have looked at me like I have a third eye growing out of my forehead :roll_eyes: so I gave up trying to find an answer.

Interesting article and thanks for that link SCA_in_Tx.

Merl from the Moderator Support Team

This is the article I read and seem to have forgotten putting on. I’m only going by the symptoms which are in addition to the usual ataxia ones. And as you will see some of them are a little embarrassing which is why I usually don’t talk about them. I had an astrocytoma too but as the neuro-surgeon who removed it - physically in those days before chemo – he said it was not benign. I’m not a medical person but that doesn’t make sense as they also said it might have been there for years. Well that’s benign isn’t it? The tumour was in the cerebellum but I couldn’t tell you the exact position. I think when it started, it was minute. When it was detected it was size of a ping-pong ball and the hole it left has continued to grow and is quite massive now.
The article above also mentions Parkinson’s disease but read this article which says there’s a difference between Parkinson’s disease and Parkinsonism.
May as well say that I have yet more symptoms down there in the embarrassing parts. I have lost my sense of touch in certain regions, I may have a sensitivity to fungal problems. I have (I think) a big haemorrhoid which can bleed a lot. I have a twisted bowel and what my GP/family-doctor says is IBS. So if you share any of these in addition to what the MSA article says, then perhaps you have cross eyes too - like me.

OK, that’s some interesting reading. Thanks for that. There was information there I haven’t seen previously regarding Parkinsonism and that’s very helpful.

Astrocytoma have grades. Grade 1 and 2 is considered to be slow growing, with minimal abnormal cells. Grade 3 and 4 actively produce abnormal cells.
We can have a grade one for years and in some cases people have no idea they have one and it’s found inadvertently via a scan for another reason. Often with the lower grades that aren’t producing abnormal cells, they say it’s benign. But it can start producing abnormal cells at anytime.
Mine’s a grade 1, in the centre of my brain. It’s putting pressure on the aquaduct and this has caused hydrocephalus. So they’ve (the dr’s) put a shunt (drain) in my head to drain off the excess fluid. Along with the hydro has come some of the Parkinsonism traits. There’s a bit of a debate over which caused what, is it the astrocytoma or the hydro that caused the parkinsonism or am I just prone to Parkinson traits. I haven’t been able to get an exact answer to that one.

Having other health issues doesn’t just add to the issues, it multiplies them. As you are trying to deal with one issue, the others can flare up. Trying to work out what may trigger these flares and managing them can be a never ending task. Then to find a treatment that doesn’t mess with present medication or other symptoms can be SO exhausting.
So I can completely understand where your ‘cross_eyes’ come from.

Merl from the Moderator Support Team

There’s more. I live in UK and there’s an organisation called ‘Ataxia UK’. Beryl has more contact with them than I do. Today I asked them if there was any information relating to Coronavirus. They replied by sending me a great deal of information about other things as well as corona virus and one of them was … yes, you’ve guessed it … MSA. They describe it as a recently discovered type of ataxia. I still don’t know if I have it or not but the symptoms - which do not seem to match any other kind very well - seem to say so. Everything is available on-line (so I needn’t have asked). I presume you will probably not live in UK but as it’s all there on-line, the sky’s the limit but you’ll perhaps have similar organisations in your own country.
My tumour was in the cerebellum and was classed as a low grade astrocytoma but I don’t know what ‘low-grade’ that means. Like you, I have a shunt but its draining cerebrospinal fluid.

Your presumption is correct, I’m in Australia and, yes, we do have Ataxia groups here as well. But I haven’t looked into them much, so my information is limited in regard to them.

A point I’ve made to others and I’d like to make to you, is that:

 'There's not a lot of room in our skulls and we need to have a super fine 
 balance between grey matter, Cerebral spinal fluid (CSF) and blood in there. 
 Add a foreign mass, the tumour, and something has to give. 
 This can cause any number of mysterious symptoms'

Here’s a link to the American Brain Tumour Association regarding low grade astrocytomas

Hope it helps
Merl from the Moderator Support Team

Interesting. I’ve never seen such a clear description. Pilocytic astrocytoma sounds right for me but I’ve never heard the word.
The only thing worth adding is that I was treated by Sir Myles Gibson and his team and 50 years later, I still hold them with affection in my heart and wonder what’s happened to them all. Possibly they’ve all died. One man I remember well, Mr. Kileelie (no doubt spelt badly) was Iranian and I’m told that if he’s ever been back to Iran, he’s likely to have been shot for having a ‘Western’ education. It fills me with tears. (I’ve never told anyone that before - but it’s all true)