Last reply 7 hours ago
Alcohol and MS – your thoughts

Hi everyone,
I am hoping you can help me out. I am an MSer and a journalist who interviews for Shift.ms and also writes for the BartsMS blog (MSexism, Why our Words and Stories Matter etc). I am currently writing a piece for the Barts blog on alcohol and MS – and would love to get some feedback.
Some questions: How much do you drink? Does it make your symptoms worse? Does alcohol help you cope with the stress of having MS? Have you changed your drinking since diagnosis? Anyone gone teetotal?
Any feedback would be much appreciated.
If you write a reply – I will not quote you unless I received your explicit permission.
Thanks,
Rachel

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grandma
3 weeks ago

I had to stop drinking wine,which was my tipple, not huge amounts of. The ex other half and I used to share a bottle a couple of times a week. I used to like every kind,but my body will now only let me drink Rose, only 1 glass of an evening so a bottle (4 glasses) lasts me a week, I usually have a glass every other day,I.e. Sat, Mon, Wed, Fri., Please use my sorbiquet any time it’s of use to you. I’m 62 and have the east for25 years, 23 on Avonex, 6 months on Tecfidera. Had rrms for 23 yrs and they think (but aren’t sure) that .I now have spms😍


longboat
3 weeks ago

Kind thanks for letting me know. Like you, I have cut back as drinking just doesn’t agree with my MS. Heard some MSers say Tecfidera and alcohol leads to more flushing- but that is not the case with me.


bullman
3 weeks ago

Hi @longboat . I used to be a JD +coke drinker. I stopped. 2 years ago as I felt it affected my already dodgy walking. Walking was so bad, I fell over going into a pub. I still got served though. 😀


mermaidia11
3 weeks ago

Are you lookin for intel from newly diagnosed peeps under 40? As that’s what shift likes to focus on after all

It’s a bit of a no no with dodgy balance, neurotic waterworks and crazy central nervous system – it exacerbates it all.

But spent the first 20 years of havin MS enjoying a drink every now and again, after fair hammering it at Uni.

But now I’d rather not aggravate the plethora of things goin on as I feel pished half the time sober now! And those beer goggles….


longboat
3 weeks ago

I am looking for everybody’s comments – newly diagnosed to those who have had MS for a long time and everything in between. Have tended to get responses from those who have had MS longer and are older – (tend to be more moderate drinkers) so would be great to get some feedback from those 20-40.
Thanks again


edmontonalberta
3 weeks ago

@longboat

Rachel – I suspect there is a purpose to your question other than a general survey. Out of curiosity, why are you asking this question??

FYI – I am 62 years old – been a reasonably heavy drinker since I was a teenager. Probably described as a “functional drinker” since I married two absolutely impressive women; the 1st died 24 years ago while my present wife still loves me. Never missed a day of work until my spine surgery two years ago; followed by the PPMS diagnosis.

Smoking a pack of cigarettes daily for 45 years; smoked pot daily for almost 40 years. Cut down on my beer yet still have more than 50 a week; yet on my 6th beer tonight.

So once again, the purpose of your survey is… 😉


longboat
3 weeks ago

Hi,
The purpose of my survey is to get feedback from MSers about their drinking habits to incorporate into a piece I am writing for the BartsMS Blog (http://multiple-sclerosis-research.blogspot.com). Next week I am interviewing Prof Gavin Giovannoni at Barts for Shift.ms to see what the MS neuros view is on drinking. I am not getting paid for this – by Shift.ms, Barts or anyone (alcohol companies). I just like doing it. I have a background in journalism – so in order to write a balanced piece I am asking those with MS and those in the medical profession. I will also look at studies done already. I can happily point you to other articles I have written about MS if you want.


pulcherrima
3 weeks ago

Hi Rachel,
I don’t drink any alcohol, not because of the MS but because it never really tasted that good to me (promise, I really tried! 😀 ). But as everything I think in moderation there’s no problem about a glass of wine or beer now and then. And I think it depends on your medication. For example, taking rebif, I once was a bit drunk and high at the same time and the MS was like “well, I don’t care…”. Now taking the tecfidera pills I even consider that I don’t drink my coffee too early after taking the morning pill because my flush will downright “implode” making my head feel like a boiling kettle under pressure. >.<


natalieb
3 weeks ago

Officially diagnosed with RRMS in October last year (27 years old) and am currently on Rebif. I was super conservative when I started Rebif because of the liver damage warnings but when all my liver function tests came back fine I started drinking again. I proper binge drink once a week on a Friday or Saturday. Except binge drinking for me now is maybe 3 or 4 beers before I’m completely wasted, where before my tolerance was much higher. I also tend to not remember the nights I drink (again, this is much more severe than my uni days) even with not that much alcohol. I am 100% fatigued the next day to the point where I can’t keep my eyes open. Why do I keep doing it? Could be as a coping mechanism, or could just be because I want to enjoy myself with my friends who are young and disease free


mermaidia11
3 weeks ago

I understand chick @longboat. I can still hark back to when I was newly diagnosed and drinking was a laugh. So in answer to your questions..

How much do you drink?
Nowt, my cerebellum is damaged – so alcohol would exacerbate that

Does it make your symptoms worse?
Yes, see above

Does alcohol help you cope with the stress of having MS? No, distraction does now

Have you changed your drinking since diagnosis? Yes used to be a procecco princess

Anyone gone teetotal?
Yes, because of cerebellum damage

The newly diagnosed are generally taking dmds/meds and don’t have cerebellum issues – I would presume alcohol would not be recommended while taking black box meds
But as stress and anxiety are temporarily alleviated by alcohol …

Maybe a piece about quality of life would be good too


edmontonalberta
3 weeks ago

@longboat – Rachel,

Thank you for responding -“to see what the MS neuros view is on drinking”…

Let’s see if I am correct once you interview Prof Gavin… Drinking is bad; smoking is worse. I have been hearing this all my life – 40 years prior to being diagnosed with MS.

Ironically, my 1st wife main concern was my bad habits – that she would be widowed too young. She did not smoke or do drugs; she barely drank. Scleroderma taught her that her good habits & my bad ones did not matter…

My belief is that genetics plays a large part on our health. This has been affected by food changes over the years.

As an example, Google Search “Woodstock photos” – everyone was skinny 50 years ago yet the world’s population is now overweight. I blame sugar! On the same note, nobody had peanut allergies when I was growing up; now peanuts are banned everywhere… Why is that?

Now I eat MS healthy foods while avoiding red meat; have my Vitamin D every morning. Other than that, I will continue my life since the Doctors are doing nothing to combat my MS…

Gord


highlander
3 weeks ago

Hi Rachel
I’m teetotal used to have a very healthy relationship with alcohol but we had far to many good times, so we had to part company all on good terms.
Now all my meds say do not consume alcohol written all over the boxes,so I guess all the medical bodlings will tell you not to drink.
Seriously thinking of jumping on the wagon again…..I didn’t have ms when I was having my good times, food for thought?
Keep smiling


longboat
3 weeks ago

Thanks for your feedback edmonton, alberta. I can see you are a fellow Canadian like me (though I live in the UK now). Think genetics certainly play a role. Also wonder if the long Canadian winters could have had an impact (not much Vitamin D growing up. Getting mono at 19 probably didn’t help.
Not sure Prof G is going to say alcohol is bad… think he sits on the moderate fence.


markp
3 weeks ago

Hi @longboat

How much do you drink?
I drink only at the weekend, which in my world lasts from Friday to Monday inclusive! Guinness is my self-medication of choice and ticks all the right boxes. 3 bottles of Porter kick start my weekend on Friday evening finishing with a can of Guinness (I’m a creature of habit) then for the rest of my extended weekend we are probably looking at 10 cans a day.

Does it make your symptoms worse?
No I don’t believe so, if anything I feel better as I’m not dwelling on all that’s wrong with me.

Does alcohol help you cope with the stress of having MS?
As I said above I believe so.

Have you changed your drinking since diagnosis?
In my lead up to admitting something was wrong with me I was drinking everyday, at work, during the commute, in the pub, and at home. I thought I was going round the bend and didn’t for a minute think there was a real medical reason for my difficulties. I suppose my only real change is I only drink at home now, I’m 46 and the MS has brought my working & pub going days to an end, now only drinking from the safety of my home, furniture walking, and toilet just a few steps away!


potter
3 weeks ago

I use to be a pretty good red wine drinker until I started on Rebif. The wine had a funny taste so I stopped drinking wine. When I started taking Tecfidera I tasted some red wine and it was good again. In a social situation I my have 2 small glasses at home one. I will have some of my husbands beer or a sweet mixed drink during the week. I have a low tolerance for the alcohol in it now so one drink is plenty. It definitely has lost its appeal, the only reason I have it now is to spend time with my husband. I am getting off of Tecfidera at the end of the year, I wonder how I will feel about drinking then. Potter

Drinking definitely makes my MS worse nowadays. The day after drinking, even little amounts, switches my nerves and muscles off. To be honest until a few(4??) years ago it improved my symptoms no end. I’d stagger into a pub and walk out but now i doesn’t improve my balance at all and it aggravates my bladder.

All of that aside I still drink. Red wine and rum are my current tipples of choice. Like beer too but whereas there used to be a 4 pint limit before you broke the seal to go to the loo…….now it’s about half a pint and, I come out with half of that still swirling about in my bladder!!


ianmsf
3 weeks ago

I drink low alcohol beers and ciders, so I can drink without adverse effects.


daveo
3 weeks ago

I like a drink. When I was diagnosed in April my neurologist told me I drink too much, and I guess she’s right. Before diagnosis I would easily drink 5 days a week, never to get drunk, just to help unwind after work. But it all adds up. After diagnosis I stopped drinking for a week but I found I missed it and made me miserable so now I drink less and less often but I still do it for the relaxation benefits. Drinking, whether socially or not, has been a part of my life for 20 years. I enjoy it so i dont think I’ll stop anytime soon due to ms. Interestingly I found it helped on one occasion. I had trouble with my leg for a few days, lost some strength and could only walk with a limp. I found after a few beers in was able to walk much better – but only for a few hours. Medicinal qualities?


chezy17
3 weeks ago

I still drink, still keep up with the girls on a night out but then I’ve always said, having MS isn’t going to stop me living my life!
@mermaidia11 lmao beer goggles…think I’ve got repellent goggles on which works fine for me lol


longboat
3 weeks ago

Repeating myself… but thanks so much everyone for responding. It will really help me with with my article. The more the better – in my opinion. Obviously will let you know when I post it on the Barts blog…
Still very happy to hear from others. Interesting that everyone seems to have a slightly different response.


glawsdan
3 weeks ago

Hi @longboat

I don’t drink most weeks but will when the ocassion calls for it e.g. pint of cider whilst watching Gloucester beat Northampton in THE SHED on Saturday.

Other than a pint at the rugby, share a bottle of wine with my wife sometimes.

Dan


bradydenise
3 weeks ago

I can’t drink anymore it really affects my walking don’t get me wrong I still drink but only a little n I’ve to use the toilet alot. I just had a baby last November n couldn’t wait to have few drinks but can’t drink like I used to definitely makes symptoms worse😥😥


cammo
3 weeks ago

@longboat
When I was first diagnosed I drank a lot. I wouldn’t say it was alcoholic level but every day in the evening I would drink. On my own as my wife was either breastfeeding or pregnant again.
A lot of things changed in my life all at once. MS, first child, quit my job, depression etc and I have always self medicated with alcohol in the past to get through tough times.
It got to the point where my wife literally packed her bags and threatened to leave if I didn’t change my habits.
So I cut down. Only drank on weekend evenings and things were going fine, but I still craved a drink every day. So maybe I was at alcoholic level. I didn’t need it but I really wanted it.
Now Gilenya is messing with my liver and my neuro has rationed me to two drinks per week so as not to put additional pressure on my liver. It is hard, by my goodness those two drinks taste good.
The booze didn’t effect my symptoms. It helped me forget I had MS.


angieh
3 weeks ago

I have been dx’d with rrms for many years, I have always drank alcohol all types. Lately I really like wine. Honestly I like the taste and the way it relaxes me and makes me feel like the old me. So yes it does help me cope with not feeling normal I suppose. In the past year or two as ms symptoms decided to flare, I get completely drunk from two drinks, sometimes one. I tend to overdo it because I like it, Then I get so tired. I used to party like everyone else, not so now. I feel much better when I don’t drink so I’m best to not start. It definitely makes my fatigue worse.


lightning87
2 weeks ago

I enjoy a few beers around 2-3 nights a week. It helps me destress to be honest and I don’t find it makes my symptoms worse 🙂


watsoncraig
2 weeks ago

Was once referred to as the nominated company drinker, now working for a Munich based company that was some going! Decided I was too large and lost 6 stone, then started to feel unsteady.

Now a G&T twice a month (too tasty not to) and it gives me a reason to stagger around. Well at least to others it does, I know why I stagger and being Scottish everyone just assumes I am p####d all the time any way.

47 years old PPMS’r.

You have any and all consents required.


arbee
2 weeks ago

I used to be quite a big drinker pre-diagnosis, I used to DJ so would spend most weekends in nightclubs/festivals and usually with free drinks so I would be pretty much drunk all weekend, every weekend. Then in my early 30’s it started getting really hard, hangovers would last for days but at the same time my anxiety attacks were getting worse and the only way I could find to stop them was by drinking so it got to the point where I would have to drink before any kind of social situation, I would literally have to hide round the corner and down a bottle of vodka on my own before going anywhere.

This was totally unsustainable, I was either out and drunk or curled up in bed feeling awful, something had to give so I pretty much became a recluse, packed in drinking, took up cannabis instead and have felt much happier ever since. A couple of years later I was diagnosed with RRMS, I always felt something wasn’t right with me and I think a lot of the drinking was me trying to escape from this.

These days I very rarely drink, only when I have social situations that I can’t avoid (weddings etc.) to help stop the anxiety attacks. Any more than a couple of pints and I’m wrote off in bed for a few days, I’m not sure if it’s my MS or just old age but the pain outweighs the pleasure these days so I very rarely drink anymore


pv04
2 weeks ago

I drink less as although I still enjoy it, it generally leads to a bad nights sleep. Now restrict myself to only Friday nights + before and after football.

Drank in moderation shortly after my rounds of Lemtrada


beefree
2 weeks ago

Hi @longboat

How much do you drink?

If I’m with friends, I’d think nothing of having a couple of large glasses of wine – and I’m partial to a tequila for the road. I’m also happy having a drink or two on stressful days with or without friends. I probably drink 3 times a week, usually on weekdays when I’ve been in the office rather than at weekends. I don’t binge drink (now).

Symptoms worse?

At the time of drinking, some of my symptoms feel better, or perhaps I’m distracted and notice them less. Internal tremor is not my worst symptom but the sensation of it does bother me the most – it goes, which is great. The next day, if I’m hungover, which is usually anything past 2-3 drinks, some of my old symptoms give me a gentle nudge. At most, some light and fleeting tingling in my left hand, the same hand that experienced extreme altered sensation when I first presented with MS last summer. Things go back to normal as they should bearing in mind gaining years!

Does alcohol help you cope with the stress of having MS?

Hmm, this one is difficult. The changes that I’ve been making since my diagnosis don’t leave much time for it. Meditation is helping me cope, and I’ve recently started a lovely wind-down nighttime routine. It’s difficult to do these two things if more than a small drink has been consumed. That said, alcohol has in general, for a long time, been my coping mechanism of choice for stress. And when I do drink I definitely feel less consumed by this diagnosis, which is in my mind much of the time. But my pattern of consumption hasn’t changed, and is still more closely aligned to work.

Have you changed your drinking since diagnosis?

No, not really. I was very ill last summer and didn’t drink for a while then. My drinking trigger is definitely work. When I went back to work I resumed the usual level of consumption and wouldn’t say that in the last year my relationship with alcohol has changed much.

To give you some additional background, I spent my 20’s in a very high pressure job. When I started, there was a real drinking culture – we thought nothing of having wine in the office to take the edge off the day. And being an introvert, under extra pressure to thrive in an extremely extrovert environment, I was quickly relying on the vino to wind me down whether or not it was part of the working culture. (I also have an informal theory on the impact of gender bias in the workplace on women’s stress, which is linked to MS and drinking) By the age of 28, I was so pickled that I had to take myself away from London altogether to escape the pattern of drinking I’d found myself in, and the causes of it. I was admitted to hospital last summer with my first MS symptoms. The MRI showed 5 lesions, which led my neurologist to believe that I had been living with MS for a while. Thinking back to 28, the process of pulling myself away from London was sparked by a period of extreme memory loss, of stumbling into things, of extreme fatigue and brain fog. At the time I just assumed that it was because I was pickled, but I suspect this was really the start of the MS.


rachaellouise
2 weeks ago

Hi there –

No I don’t drink now ! It can throw my balance off, particularly if more than 1 glass of wine . I’m glad I’ve quit…
I don’t drink too because I have been following diet and lifestyle changes from the book like the Whals Protocol . It’s not recommended . Our livers are already overburdened .
If you are going to have a drink red wine is your best bet for the odd glass because at least it has reservatrol in it which is a antioxidant .

Thanks

Rachael


highheeledfagin
2 weeks ago

There was a period of maybe a year when more than one drink would almost definitely lead to disaster. I would appear very drunk but I’d know that I’d only had two drinks.
All of my current symptoms would be magnified – at the time, this was my right leg and eye, and my left arm. After lots of denial, many falls resulting in a broken nose, multiple sprained ankles, and broken teeth,, I finally admitted that something strange was happening and started keeping an eye out for signs. I eventually identified what can only be described as a creepy/uncomforable feeling in my body immediately after taking a drink, and my bad nights always followed that feeling.
I (mostly) stopped drinking or confined it to in houses with friends, for about two years.
After that kinda miserable time, I reintroduced the odd drink and gradually increased. Now, I can generally drink normally again but sometimes still get that weird feeling after just a sip and immediately know that it has to be a soft drink night.
I have never had any real explanation about what’s going on but I’m happy for you to add my story of it’s useful.

Dee


dominics
2 weeks ago

Interesting question.

I find a stiff GH+T of an evening seems to take the edge off the MS sytmptoms (and the general chilling out factor I realise).

Beer: with a bladder the size of a walnut then only one or two before I am beating a regular path to the loo. V. dull.

As many have remarked, getting pissed when not already at your final destination can be – ahem – quite challenging. I walk as if I have had twice as much as I have had.


melissa-g
2 weeks ago

There was a thread about this recently, and I agreed with the poster that alcohol also made me feel worse. I’m always light headed feeling, and fatigued, and drinking increases these symptoms for me. Have mostly had to give it up except for a couple of drinks here and there. The few times I tried to have a big night out drinking over the years (dx in 2012) I’ve have an incredibly bad hangover the next day, worse then I ever did before being diagnosed. Was never sure if this was because of medication, or just my body!


longboat
2 weeks ago

Thanks again. Going to probably start writing the article at the end of the week – so if anyone else wants to post, it would be great to do it before then. So far, I have had 26 responses. All hugely helpful – so thank you. Surprisingly the majority commenting have been men MSers (15 men vs 11 women). Not sure why – as the majority of people with MS are women.
Is it because men think about alcohol more? Drink more? Or do they just tend to post more on Shift.ms? Or are they more open about their alcohol habits compared to us women?
Any theories gratefully received.


marajade
2 weeks ago

I was diagnosed 2 years ago, and I was a social drinker. As my Ms has progressed, my ability to drink has lessened. I’ll have 1 drink at home every now and then, but not when I go out. With all the brain buzzing, I always feel one drink ahead of everyone to begin with. Then I start to feel more crazy, it’s not worth it anymore.


longboat
2 days ago

@cammo
Thanks a lot for your response – re alcohol and MS. Is it possible I could use some of your reply for the piece I am writing for the Barts MSblog? If this is okay, can I use your name cammo to identify you. Also is it possible to get your age – or an age range? Kind thanks,
Rachel


londonlad
2 days ago

@longboat

I have pretty much stopped drinking alcohol since diagnosis.

I have max a couple of drinks on a few occasions but find it now makes my symptoms worse, and my balance isn’t perfect now as it is. I don’t like the feeling and just can’t enjoy it.

So I can enjoy one beer and stop, whereas prior to diagnosis. I had an unhealthy relationship with alcohol. Which stems back many many years. I would say functioning alcholic. In that I would drink every night or most nights, but after work and it never stopped me getting to work, or living a “normal” life. Although I ruined most weekends by getting so wasted Friday and Saturday nights, that the next morning into afternoon, I was just getting over day before.

I had identified I drank too much in the past, but was never able to stop the bad habits for long, and when I did go for sustained periods, I would often rebound.

So when I got diagnosed; the severity of the onset scared the shit of me, when they where doing CT scans etc and had no indication of MS, I was scared it could have been a tumour or something and could die. It was traumatic experience.

Once I started my recovery, something in me switched. I was able to make changes without hesitation. I’ve not smoked a cigarette since the day I was hospitalised 1 and half years ago. And while I’ve had a few drinks, even when I have, I’ve felt like drinking more than a few and the one time I did have 3, had a hangover so haven’t done it since lol

Strange to say. I feel lucky sometimes by the lifestyle changes I’ve made from diagnosis. While I wish I didn’t have this. I might in the long run be healthier because of it?! Go figure…


jolea
2 days ago

Hi.
I have not had a drink in 5 years.
My view is alcohol and MS do not mix.
Also medication side effects and alcohol do not mix.
I also eat a non inflammation diet.
This has given me a better health and reduced medication.
Good luck. LJl🤹‍♀️


brando
2 days ago

I have never even tasted alcohol in my entire life, even before I was diagnosed I just had no interest in it. I am a bit of a believer in that if you cant have fun without drinking you are no friend of mine.

Brando


adrlorcha
7 hours ago

@longboat This has been a very insightful post! I, prior to diagnosis, found that it took very little alcohol to feel confused & overly tipsy. Even with just a little alcohol in my system. A glass of wine, maybe 2 would knock me on my @$$. The next day felt like i had drank the whole bottle myself!
I was diagnosed 04/2017 & stopped drinking, but on occassion. I missed it! Socialization & conversation is what draws me to it… I started Tecfidera 11/2017 & had to time any amount of alcohol around taking it. Interestingly enough though, I still do partake in a glass for special events, but without the too tipsy, knock-me-down reaction! I don’t “feel” tipsy or really much of anything. But I do feel the hangover the next day, even if just having a glass or two…. I will likely have a glass or two every so often, but definitely have taken a step back.

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