Multiple System Atrophy Trust

Can I have your opinion please?

Hello all. I recently posted this on my 'home site' (PD) and thought that I'd gauge opinion from the MSA community. Thanks for listening:

About 8 years ago I accrued some neurological symptoms although I never realised that was were it was leading: I lost my sense of smell, started to panic in public speaking situations and my sleep was suffering. About 2/3 years ago I realised that my handwriting was going small and could tremble slightly when my right arm/hand did something. Then my right arm stopped swinging and it all led to a PD diagnosis.

I was resigned to this and did well on Azilect and then Requip both of which helped my symptoms very much until November last year. I asked to be put on Levadopa as I play in a band and wanted to remain as a player. I was surprised at how little difference the Levadopa made and this has continued to today. I'm meant to take a smallish dose but have become so frustrated with it's lack of efficacy that I took a single dose of 200mg this afternoon and it didn't achieve much. So I'm wondering if this is MSA unfortunately.

The conundrum is that I have very few of the symptoms associated with the disease. Essentially, on the debit side, I have bradykinesia and an action tremor. But I have no serious bladder issues (occasionally a sudden urge to pee but not awfully frequent and never incontinent), I have no erectile problems, I don't slur words, no issues with swallowing, have never fallen over, balance is good, don't have nightmares or hallucinations, have no postural hypotension, can walk quite quickly etc etc. And from what I know, losing one's sense of smell is more suggestive of PD than MSA.

So I'm puzzled if a little concerned (bit of an understatement!). Would like to hear your insights on my situation. Much appreciated.

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Hi Jeeves. I didn't know anything about MSA until your post. I certainly have no advice, but from what I have quickly read about it, take some heart that you don't have the classic symptoms. There is an exception to every rule. I wish you all the best with this struggle.

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Thanks Eliza. Much appreciated.

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Jeeves,

My wife has a possible diagnosis of MSA and this has developed to the current stage over a 10 year period. It started with loss of feeling in a finger and she now has the classic symptoms of MSA.

If we could not have it we would.....

My advise is to not panic and look for a problem that is very difficult to diagnose and enjoy every moment you have now...MSA is a last resort diagnosis and there are many alternatives on the way.

Live for the day.

Paul

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Thank you Paul

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Hell Jeeves

Paul's advice is excellent - live for the day, don't try to find a diagnosis that you probably don't have.

I see from your posts in the PD community that you have already spoken to the MSA Trust which is the first advice I have for anyone with the possibility of MSA. In your post you said they advised that it is unlikely that you have MSA. I would also agree with a couple of the people who replied to your PD post - I don't think it helps to try and self diagnose. Those of us who are closely affected by someone with MSA know how difficult it is to identify different neurological conditions.

You are so lucky as compared to many with a diagnosis of MSA - you yourself list all the things you can do - enjoy them; try and take Paul's advice, live for the day because you don't know what tomorrow will bring!

Take care, Ian

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Many many thanks Ian. Taking some time to consider my situation is greatly appreciated.

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I would agree with all that Ian says. Enjoy your band playing and definitely don't google MSA unless you absolutely have to! Those of us in this community so wish we could have stayed in the PD one! Good luck, and stay as healthy as possible.

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Thanks very much Jmt

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Have you had an MRI Scan? If not I think it might be a good thing to have one. Certain conditions show signs of what is the matter. I think you should see a Neurologist and ask to have an MRI. However having said that neurological conditions tend to be incurable. So have a talk with yourself and then loved ones. Do you really want to know?

There are things you should do however. Like make a Will get POA in place for health and finances. Make it known what you would like to happen at end of life. Sorry if that sounds very negative but we should all do those things even if we are well. We don't like to think about it however but they are important to everyone. We even have adverts telling us to do this now and to be honest I think they are right.

Take care and enjoy that band! I think music is a great uplift. Exercise if you can too. As long as you can do things do them. That applies to everyone. I have just had an email from someone who is going to dance at home. I sit too much so I am going to do the same!

Marie

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Thank you Marie. Much appreciated.

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Hi Jeeves, I have read all the very thoughtful replies and agree very much with what they say. It took some time for my dad to be diagnosed with MSA but he had balance problems very early on. He now has almost all of the symptoms you list but this has taken around 8 years from when he started to notice there was something wrong. I think that everyone is so different. However, i would encourage you to live life to the full within your capabilities and definitely continue with your band. Music seems to be excellent for our brains. All of the practical suggestions are useful such as getting POA. My dad still gets pleasure from music, the beautiful countryside and reading.They are looking into getting an adapted motor home so that the family can take my mum and dad out for day and short trips as my dad is still mobile. It means there is always a toilet on hand and both can relax into comfortable seats, whilst having a change of scene. It does focus your mind on trying to live life to the full and getting pleasure however and whenever you can. I wish you all the very best.

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You’re very kind. Thanks for that and I wish you and your parents all the best.

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Hi Jeeves It seems that I am in a situation similar to yours ie:

- PD diagnosed 7 years ago

- slight tremor

- no more sense of smell

- need sometimes to go and pee rapidly

- only right arm concerned

- my handwriting is small

- no real hallucinations

- good sleep

- no erectile issues etc

- score updrs 22 with my free apple PD app doctot

- medication Azilect + neupro 8

Recently I moved to a new neurologist and her conclusions were:

- do not let the brain suffer

- increase my dopa level from 3 x 50 to 3 x 150 with the objective of lowering my updrs score to 10

- for her no long term side effects in taking the adequate level of dopa

- Even if I don't suffer so much from tremor I am the ideal candidate for brain stimulation

She has no doubt about the diagnosis

Her message about the dopa dose is : why do you take a bicycle to go from Lyon to Paris if you have a car

Hope it helps

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Hi Jeeves It seems that I am in a situation similar to yours ie:

- PD diagnosed 7 years ago

- slight tremor

- no more sense of smell

- need sometimes to go and pee rapidly

- only right arm concerned

- my handwriting is small

- no real hallucinations

- good sleep

- no erectile issues etc

- score updrs 22 with my free apple app doctot

- medication Azilect + neupro 8

Recently I moved to a new neurologist and her conclusions were:

- do not let the brain suffer

- increase my dopa level from 3 x 50 to 3 x 150 with the objective of lowering my updrs score to 10

- for her no long term side effects in taking the adequate level of dopa

- Even if I don't suffer so much from tremor I am the ideal candidate for brain stimulation

She has no doubt about the diagnosis

Her message about the dopa dose is : why do you take a bicycle to go from Lyon to Paris if you have a car

Hope it helps

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Thanks Roger. We've spoken before. Does the Levadopa help you then, cause I can't see why i bother to take it although I get good help from both Azilect and Requip?

BTW: Are you taking Mannitol?

PS: I've just found the best drug on the market: giving up work!

Best wishes

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Levadopa helps me very much I am almost in the same situation than before Parkinson My neurologist encourages me to increase the dose and to take 3 x 150 a day. I don't take mannitol or NAC because I don't know if they cross the Brain Blood Barrier I am currently doing research and tests on pharmaceutical data My job before being retired was research engineer and more specifically data analyst.

Best wishes

Roger

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Plenty of good advice here

All I would add is that these ae powerful drugs so don't be tempted to hop from one to another suddenly. If the side effects are worse than the benefits, stop taking it but come off gradually. Sinemet helps Pd symptoms but not most of the aother MSA ones. Its your choice if it is worth taking. After 8 years it was still working for my husband but at more than the recommended maximum dose which we had at very carefully timed intervals to keep the effective dose as low as possible.It was not easy to persuade hospitals that their routine of breakfast, lunch, supper and bedtime was not exact enough but persuading people is a skill carers need to learn......together with never taking no for an answer.

When it wore off as it inevitably did, we had to reduce the dose equally carefully.

Good luck and remember that everyone's MSA really is different. Listen to other people's advice but be aware that , as my husband's consultant said "I would like to try you on a new drug but I have no idea what it will do for you. You may come back and say it is marvellous why didn't you give it to me before? or you may say why are you trying to poison me.? Unfortunately there is only one way to find out - and that is suck it and see.

FredaE

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Thanks Freda😊

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Hi Jeeves, I don't have MSA but am caring for my mother who might have it. She was diagnosed by the Oxfordshire neurologist in September last year. We know now she has had clear symptoms of PD for 7 years and had less clear ones for 3 years before that. The neurologist labelled her as having 'atypical parkinsonism' or MSA because her symptoms are progressing more quickly than PD (she can barely walk now). But her symptoms are progressing more slowly than MSA usually does and she is responding to Madopar (Levodopa plus benserazide). So we are not really sure what she has and we are just taking it a day or so at a time. As others have said there doesn't seem to be any one path of symptoms for people and you just have to do what you can to keep enjoying life. I hope you find what works for you.

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Thanks for a thoughtful and kind reply. Good luck 😊

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