Last reply 4 months 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
7 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
7 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
7 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
7 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
5 months 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
5 months 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!


nobodyin
5 months ago

Sober for 2 months now, help with alcohol definitely a post code lottery. Been reading a lot more on neuropathy, which is getting worse in my fingers and toes, also a great pamphlet on PPMS by the MS trust. Have to conclude some 13 years of alcohol dependency have done damage to my PNS and CNS, result MS. Multiple lesions/scarrings/thickenings. Have to now see if I can go on, want to concentrate on seeing if I can somehow reduce the spasticity, what does anyone know RE baclofen pumps, botox, surgical intervention on the over firing nerves? Any advice/commment welcome.

Seeing NHS neurophysio Jan 3rd, only had to wait 3 months. Not sure stretching and strengthening gonna do much without something more than 15mg of baclofen orally x3 times a day, just zonking me out.


mlgilber1
5 months ago

@nobodyin. Congrats on 2 months sober! That’s awesome! I saw a doctor that does the pain/baclofen pumps. I know they work well for a lot of people. She said the good thing is that the side effects usually go away when you have the pump versus taken orally since the medication is delivered straight to the spine and they can program the dosages so if spasticity is worse in the mornings or night it can give a bigger dose than during the day. She also told me there’s a boost button on the remote if you feel the need for an extra boost of medication. Also, a lot of other meds can go in the pump. We decided it wasn’t time for me to get one just yet because it wasn’t bad enough even though it was still bad and baclofen doesn’t really work for me. She said it can work a lot better in the pump. I was in physical therapy and I’d say that’s helped me the most, but it took awhile. It took about two months before I saw improvements, but now I rarely have spasticity. Best of luck!


nobodyin
5 months ago

Thanks for the reply, can I ask the nature of the physical therapy?


potter
5 months ago

My neuro sent me to physical therapy when I was first diagnosed 11 years ago. I was having a lot of spasticity I continue to do my stretches and haven’t had any problems with spasticity. It would probably really help you if you went to one. My therapist said that there are different stretches and she trains you on the ones that you need. Potter


mlgilber1
5 months ago

@nobodyin We change up my physical therapy routine all the time depending on what I need, but do multiple stretches and exercises. We do a bunch of leg and feet stretches and exercises and then I was having bad nerve pain and spasticity in my hands and my fingers kept locking up. They have a bunch of tools to use to do the exercises and they weren’t that much so I even bought some to do at home. I was also having bad tingles and crawling sensations on my head so I figured I’d ask if there was anything I could do and sure enough the stretches helped immediately with it and they had this thing I could lay down with behind my neck that worked tremendously. Just make sure you tell them exactly what you’re experiencing and where and they should know a bunch of exercises and stretches to help, but give it time. It took awhile for my legs to return to normal and a bit for my hands. My head started getting almost completely better immediately.


merfield
5 months ago

@nobodyin, im ppMS too. B****cks to alcohol abuse as a cause of MS. I’ve only ever been a social drinker who gave up – except for the odd glass of wine – about 20 years ago owing to helicobacta pylori induced acid stomach. I was diagnosed in 2016, having been experiencing slight symptoms sinse 2012. An MS friend very recently sent me an article from the New Scientist suggesting there’s a link between the Epstein-Barr virus and MS. That the EB virus which causes glandular fever may be causal. Check it out. You’re better to give up the sherbet anyway as it will only exacerbate your symptoms. Happy C’mas. xx


grandma
5 months ago

Hi all,@nobodyin, @ jcorvec, @meg_kingston , you are BORN with ms, it takes a ‘major trauma’to your body to ‘set it off’ being pregnancy, an accident, or possibly alcohol, they are all major traumas in their own way. People have ms without knowing it, they do autopsies and find, in the brain, that people had ms without even knowing about it, how lucky for them. We’re the unlucky ones, there are thousands of people with ms who don’t even know about it and long may it continue! You didn’t do anything, you were just unlucky, I don’t say that exercising, stopping drinking, changing lifestyle, all these things might have an effect, but as we live in a postcode lottery country , sadly it will depend on where you live. All we can do is be here for each other, keep fighting, although you shouldn’t have to, have a great Christmas, eat, drink, be merry, and be grateful for what we DO have, don’t despair about what we don’t and don’t feel guilty, YOU DID NOTHING, make the most of now and don’t look back looking for answers.🥊👹😍


watsoncraig
5 months ago

@nobodyin as a PPMSr myself i have to agree with @grandma , drink is not the cause. I lost a pile of weight (6 stone my choice) then started to stumble a bit, finally got the diagnosis of PPMS. If I hadn’t lost the weight would I have developed it who knows.
You always have it there and somethings kick it off, not cause it.


merfield
5 months ago

No one is born withMS – we are born with an immune system that can get out of control and attack our myelin sheaths. The cause is as yet unknown……there are only
suspects.

‘The cause of multiple sclerosis is unknown. It’s considered an autoimmune disease in which the body’s immune system attacks its own tissues. In the case of MS, this immune system malfunction destroys myelin (the fatty substance that coats and protects nerve fibers in the brain and spinal cord).4 Aug 2017’

xx


nobodyin
4 months ago

Having watched a biopic of the late great Richard Pryor last night on BBCiplayer I can only suspect that substance abuse either gave a heavy nudge to or led to his MS. Having got hold of my medical records its nice to know a doctor wrote chronic alcoholism in them in 2013, would have been even nicer of him to tell me that diagnosis. Armed with it I might have been more able to fight for help from the poor alcohol services offered where I lived.
Anyway I have my opinion and others theirs, I had my problem of 40 to 50+ units per week for 13+ years from my late 30’s, not a healthy way to enter my later years and that is a fact.
Onwards from here rightly or not I have obtained an appointment outside of my region with a neuromuscular specialist. @ the end of January. Hoping for informed answers to my questions on a prognosis and help/info on a RE baclofen pump.
I had to e-mail the CEO of the hospital to sort out an appointment cancelled @ short notice, with no alternative offered other than going back to my GP for re-referral (A top tip for dealing with NHS hospitals or indeed any large commercial organisations). To me thus far, PPMS seems to mean a shunt into the sidings to be left alone & forgotten in some regions.
An appointment with a neuro-physio on 3rd Jan gives me something else to hang on for.


meg_kingston
4 months ago

@grandma – thanks. Wales is notoriously bad for neurology specialists, I think we’re not even in the lottery draw! No idea about alcohol support here, I’ve never enquired. I honestly believe the stress of changing your lifestyle could be worse, but we don’t know what causes or exacerbates it, so it’s a personal choice. Happy New Year. 🙂

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