Last reply 2 weeks ago
diagnosis confusion?

Hello all, having recently been diagnosed with primary progressive MS, after an uphill fight of over a year to get a diagnosis, I wonder if anyone else on here has had a diagnosis blaming alcohol abuse for their MS. My latest clinic letter, after an MRI of my brain and spinal cord with dyes would seem to lay the blame there, saying my symptoms (spasticity & weakness in my legs) should hopefully improve if I maintain my current abstinence.
I know its potentially an embarrassing subject to air in public but, would welcome information
from anyone who has an insight from either experience or researched knowledge of PPMS.

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stumbler
2 months ago

@nobodyin , so alcohol abuse causes MS! If that was the case, there would be more than just over 100,000 people with MS in the UK!

Smoking is another “cause”. And, it could also be sexually transmitted, which may have fitted with me, as I was a bit of a tart in my formative years!

We’ve all got a past, which we can’t change, so just deal with the hear and now.

Here’s a booklet regarding Primary Progressive MS (PPMS), which you may have already :-

https://support.mstrust.org.uk/file/store-pdfs/Primary_Progressive_MS_2017.pdf


nobodyin
2 months ago

As indeed I am, though I would obviously like to know if the prognosis holds water. Annoyingly it has taken in reality nearly 2 years and finally letters to my MP and the CEO of my local hospital to get to see a neurologist and get a diagnosis, during which time my condition has got worse/deteriorated. To twist the knife further I got
a call for work @ Pinewood on the morning of my first appointment with the neurologist. Needless to say people on crutches, as I am now, wasn’t last September, aren’t much use for set building on film sound stages.


jcorvec
2 months ago

Hi there!! I do not post much here because my condition is poor and it is frustrating to read what some people say here – I will be doing better if I would just use mind-control, etc. All MS Societies do this and I refuse to listen any more. When I first saw a neurologist, he was very very interested in my past alcohol abuse being the cause of my trouble. I AM NOT STATING ALCOHOL CAUSES MS. However, for some people it may be a factor in their condition. I read posts from MSers from all over the world who write they are or were heavy drinkers. Just saying. Nothing we can do now though….Take care!!!


nobodyin
2 months ago

Thanks for the replies, having moved back to Leeds (by necessity, not choice, no disrespect to the place) will be seeing the Leeds MS team next week hopefully getting a second opinion from their neurologist(‘s). Sobriety seems to suit me I at present, certainly easier on my wallet, distance from my previous life in London has also allowed reflection on the damage alcohol caused to my relationship with my ex partner and young son. Outside of London the health service seems to be less stressed and neurophysio (only talked of but, never seen in the capital) is now on the cards
`vb


nobodyin
2 weeks ago

A month or so of total sobriety (thanks Forward Leeds & the prescribed acamprosate, alcohol services a post code lottery) means clearer perspective & I think the momentary swirl in my head and loss of balance I experienced on a few occasions five years ago were a warning of things to come. I wondered if they were mini strokes? Probably the start of the plaques in my brain, alcohol may not be the cause of all MS but, and sorry Dr Ford, I think it caused mine for sure.


meg_kingston
2 weeks ago

Alcohol abuse might make just about anything worse – it’s not the cause of MS. Nothing so simple.

I started getting seizures a few years ago and my GP said it was alcohol – she doesn’t drink and I do. It didn’t make sense to me ‘cos some days I’d drink and not get them. I kept a detailed diary of factors when it happened – including times when I’d had nothing to drink. But there was always second-hand smoke around. I now have confirmation that it was the smoke that triggered them.

Don’t let anyone tell you why it’s your fault. Yes, it’s a good idea to cut down on booze, but you also need to reduce stress. Do what you can, but remember you need to live your own life. Even if it caused your MS, there may well be other factors, like genes, childhood infections – we don’t know. But you have it, don’t worry about the cause, focus on living with it from now on – that’s what’s important!

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