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rachy

[SURVEY] What medication are you taking and for what symptoms?

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rachy

What medication are you all taking and for what symptoms? Are they actually working for you?

 

I am taking :

 

Baclofen = Spasms, I found they took a while to start working and i have had to have maximum dose to get any benifit out of them but yes they are helping me loads..

 

Deazepam= spasms and anxiety, I started on a high dose when all my symptoms started but ive managed to come off them and just take these when my symptoms flare up.. yes they do work but wouldnt want to become reliant on them..

 

Tramodol= for the pain, they work great for me as they are the only pain killer that actually work when pain gets really bad.

 

Antibiotics= perminant for bladder/kidney infections

 

Sleeping pills as required ....


.....................................

 

Rachy xx

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davidtaylor603

It is my wife that has MS and all she takes is LDN which only stops the disease getting worse. Unfortunately although she was diagnosed in 1986 just after LDN was invented she only found out about it about 5 years ago, better late than never I suppose. It is very annoying to know all the years of suffering could have been avoided though, but then I guess millions stave and that is not necessary either.

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Hezza

Hi Rachy,

 

I take Rebif which is one of the disease modifying drugs. I'd say looking at my average relapse rate and severity of relapses then the signs are that it is doing some good - my rate is down and the 1 relapse that I've had since I started was much less severe.

 

I have just started Detrunorm for bladder. Too early to know if they're making a difference.

 

I've also taken Stemetil for dizziness and nausea but only for a few days.

 

When I'm feeling achy I take paracetamol / Ibuprofen as required.

 

In general I think MS makes it hard to know whether something is working or not. You never know how good or bad you would have been without it.


Life is short. Eat dessert first. Jacques Torres

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Michelle

I take Pregabalin for neuropathic pain,cause by all the lesions on my brain.

Citalopram for mood swings

Nifediphine (excuse spelling) for Raynaurds. This opens up small blood vessels,which supply blood to my hands,feet etc.

Tramadol as a top up for pain.

Drink herbal teas, and inhale lavender oils, to help relax me before bedtime.

Michelle

:flowerface:

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fiddlestix

I take Gabapentin for neuropathic pain & for myoclonus - an unexpected bonus is that the 'whiteouts' I used to get have all but vanished too

Lorazepam for the MS hug, & sometimes for sleep problems

Buccastem for vertigo & nausea

Mebeverine for gut spasms

Loperamide for diarrhoea

Fybogel for when it goes the other way

Ranitidine (Zantac) for acid reflux

Gaviscon for when the Zantac isn't enough

Ibuprofen & Co-proxamol (shhh, I still have a stash!) for general aches & pains

Algesal cream for back pain

Needless to say, I don't take all of the above all of the time (except Gabapentin), but, apart from Lorazepem (which I have to ask for), the rest are all on my repeat prescription form for me to order as & when I need them.

I also use:

various aromatherapy oils (especially lavender) according to my mood

and

Caffeine, nicotine, & camomile tea to keep me sane :smarty:

But what works for me best of all is acupuncture: I have an 'official' treatment every 2-3 weeks, & in between I've been taught to stick needles in myself.

Oh, & I forgot to mention the Ortho-gynest cream (for menopause), & the zillions of supplements I take

And yes, everything I take does work (after a fashion) - otherwise I wouldn't bother

 


I used to have a handle on life, but it broke

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Aldo
What medication are you all taking and for what symptoms? Are they actually working for you?

 

I am taking :

 

Baclofen = Spasms, I found they took a while to start working and i have had to have maximum dose to get any benifit out of them but yes they are helping me loads..

 

Deazepam= spasms and anxiety, I started on a high dose when all my symptoms started but ive managed to come off them and just take these when my symptoms flare up.. yes they do work but wouldnt want to become reliant on them..

 

Tramodol= for the pain, they work great for me as they are the only pain killer that actually work when pain gets really bad.

 

Antibiotics= perminant for bladder/kidney infections

 

Sleeping pills as required ....

 

Baclofen did sod all for me! deazepam is better in my case, also good for weight loss!

Tramodol, well not taken since having ms but had them for my slipped discs! did the trick! be careful tho, very addictive again good slimming tablet :smarty:

stopped my avonex

sleeping tablets, only now and again, again quite addictive.

Deazepam again not for a while, but Doc said may help, not sure due to problems i had before with my back.


Please ignore my spelling.. I struggle at the best of times!

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Oops

I take:

 

Fluoxetine - Mood swings

Gabapentin - Neuropathic pain and to help with spasms (can't tolerate Baclofen)

Tolteradine - Stop me peeing all night

Ibuprofen and Paracetamol - Morning and night plus as needed through the day for facial pain and general aches.

Gaviscon - Reflux

Dermovate - Steroid cream for excema which is worse because of the Tolteradine.

 

I've been offered a lot more but am severely restricted as to what I can take and still be fit to drive the wagon.


Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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skyblue7

Tis my wife that has MS, but she takes:

fluoxetine

gabapentin

4.5LDN

Sorry but just reading the lists Im amazed that not many on LDN, this turned my wifes life around. It has stopped progression, plus extra benefits, sleeps 8/9 hours a night without jumping out for loo every half hour, nearly all fatigue has gone, not tired during daytime & she feels so much better. been on LDN nearly 3 years now & gets it on NHS for free.

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mayb

I take Gabapentin for neuropathic pain and burning sensations and cramps

Tramadol for pain as nothing else works for meon that - only when I really need it

amytryptolyn at night, a low dose for pain at times and also for keeping me from getting up to wee in the wee hours

I do take co-codomol for severe pains in my eye and head or tramadol if that doesn't do it

 

These all work well for me but I do get confused and strange when taking tramadol - I am not aware of side affects with anything else.

 

I don't envy you the list of medications banana - I can't remember what I have taken and when unless I put mine in a pill box with day and time on it!

 

 

I think I remember reading about a small survey of ms nurses which showed that they felt a maintenance dose of 900 whatevers of gabapentin a day helped a lot of their patients. When I feel better I do try and get back to that but on the whole it is not enough for me.


Mayb

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LalalaKirby

Currently, I am on nothing, and seeing where it takes me. :titanic:

 

 

In all seriousness, I was on Copaxone, but that was making me steadily worse, so I came off that. That was all back in April.

 

On my birthday (Boo! *pout*) I had to go on a course of oral steroids. Methylprednisolone, to be precise. It was only a small course, but I had such a bad down-turn to my mood, that next time I have a disabling reaction I need to not only go to hospital for the IV drip, but they will have to keep me in to monitor my moods! At least the medicine kinda did the trick, and cleared up most of the problem. But the withdrawal was nasty as well.

 

Otherwise if I get bad pains I take ibuprofen, and if that doesn't touch it I'll wait it out (I've been saved the really bad pains so far, I think).

 

... I think that's about it. I don't smoke or drink, and I make some vauge attempts to look after my health these days (though I'm well off Wii fit and low carb :snail: )... But yeah otherwise I've not much choice but to wait things out as they happen.

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I'm such a geek when I draw in breath it's with pixels!

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Crappy
Marina

I think this is a superb topic! So I shall pin it :cheerleader3: and hope that many others join in and contribute too.

 

LDN - 3mg which I've been on since Feb 2007. I've been under extra-ordinary stress and anxiety during the past 3-4 yrs and am convinced that, despite the occasional relapse, I'd have been far worse due to the stress if I hadn't been on the LDN. I can't for the moment say that it's worked as well for me as for some other people, but that's due to the stress - as my neuro and MS nurse have told me, it doesn't matter what medication you're on, it won't help much with that kind of stress.

 

Baclofen - for spasms incl trying to keep TN at bay, 2 x 30mg daily or 3 if needed. I find it helps my morning spasms and pain in my calves. I had come off it for a while earlier this year to see if the LDN was working instead. At first, I noticed no change at all so I thought the LDN was indeed doing the same job. Then I began to notice that I was getting this awfully painful stiffness in my calves again, so I went back on it and the stiffness and pain has improved a bit again.

 

Lorazepam - a tranquiliser which acts as a muscle relaxant, similar to Diazepam (Valium). Obviously, to relax painful muscle spasms and also for occasional anxiety. Taken when needed. Helps a bit but not hugely, but then I've always (luckily?) apparently been highly resistant to them.

Armour Thyroid - a natural form of thyroxine, imported from the US on private script, for an under-active thyroid. 3 "grains" (the old fashioned type of dose) a day.

 

HRT - in the form of oestrogen tablets. I used to be on implants together with testosterone in the implants, but got fed up with my now non-existent bum looking like a dart board from all the tiny scars.

B12 - jabs every 3 months.

 

Ibuprofen - when needed not that I think it does that much anyway. I take the Nurofen express ones. Can't take many other pain killers (apart from paracetamol) as they can't be taken with LDN due to containing opiates of some sort or another.

 

Clonazepam (aka Rivotril) - very occasionally or rarely for neuropathic pain as I can't tolerate Gabapentin. It's meant to be taken daily, but if I took it daily, I'd be asleep all day and night as it has a side-effect of making one very tired and sleepy. Can help overnight.

 

Waterfall D-Mannose - for bladder problems, as a preventative. If I do get an infection, which I'm prone to, then it's antibiotics which I was told by a urologist after a biopsy (when they didn't know I had MS and were investigating severe bladder problems) that I should take daily for years but I refused... no way did I want either resulting yeast infections or to become resistant to them.

 

Steroids by IV - I've had these 3 times now. First time, it seemed to help quite a bit. 2nd time, seemed to make things worse at first. 3rd time, didn't seem to make much difference. Nowadays, the neuro tends to tell me to wait and see if the LDN helps a relapse first, and tends to think there's no point in trying steroids again if they don't seem to work so well for me now.

 

A selection of vitamins and minerals and EPA.

 

May be something else I've forgotten, in which case I need a med for memory! :cheerleader3:

 

Like "banana", I'm afraid caffeine and nicotine help keep me sane too!

 

I've not really been offered anything else except for the DMD's which I've refused as I choose not to have them, so tend to get what I think may help, even if only a tiny bit, at the chemist, eg, Stugeron for balance or balance associated nausea.

 

There are certain meds I can't take, for instance penicillin as I'm allergic, and anti-depressants as I get terrible side-effects from all of them due to their affecting my adrenalin and I'm sensitive to my own adrenalin, which in turn means I can't have anything with adrenalin or ephedrine in them either. I seem to be sensitive to more and more medicines these days though.


Marina

(belated DX in June '05, SPMS)

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fiddlestix

Marina, have you tried Buccastem for balance & nausea? You dissolve it between your lip & your gum, which means it bypasses your digestive system & gets to work much faster - it tastes pretty foul, but if I take one quickly enough (never go anywhere without them!) I can stop a vertigo/nausea attack before it really gets going. I don't know if you have to pay for prescriptions or not; I don't, so it's obviously much cheaper to get them on prescription that to buy similar from the chemist.

 

I have a theory that the quicker you deal with some of these things that MS randomly throws at you, the quicker & easier it is to treat - in my case at least, it's as if if I let myself get too dizzy, or the MS hug gets too much of a grip, then my brain gets stuck in a groove & no amount of medication will shift it until it's run its course, whereas if I self-medicate at the very first sign, sometimes it comes to nothing.

 

Following a tip from a helpful doctor (yep, they're not just a myth!), I now take Lorazepam in a similar way - just dissolve a bit against my gum, & again it stops the muscle spasms (or anxiety) before it really gets going. The little white tablets don't dissolve very well, so I now always ask for the 'blue' form of Lorazepam (used to be called Ativan) which dissolves much better.

My GP has written on my notes that I'm 'exquisitely sensitive' to most drugs, meaning that a little goes a long way: one quarter of a 1 mg Lorazepam tablet used to be enough to deal with my rib spasms (and knock me out for several hours), and a quarter of a 3 mg Buccastem would do the same for the vertigo, but even though I take them very sparingly, I must be getting resistant, as nowadays it takes at least half a tablet to have any effect.

 

I wasn't offered DMDs as I was 'too far advanced' by the time I was diagnosed, but I think I would have refused them too.

 

 


I used to have a handle on life, but it broke

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Crappy
Marina

I have to admit that since being on the LDN, the balance (and whatever little nausea I might've got from it) has improved a lot. I've not heard of Buccastan though, I must admit. I too have access to the BNF and also have the book - invaluable resource for medaholics like us :hearts: ! Even Mike's GP calls me "Dr Marina", haha, as I have a tendency to sometimes "diagnose" or take a guess at obvious things correctly, or know what med might have what effect.

 

I also tend to keep a stock of meds "just in case" so that I too can self-medicate at the first sign of something. I'll try that tip with the Lorazepam though, thanks. My dosage is 1mg tabs, as I'm so resistant, sometimes need 2 (like if I'm going to the dentist as I have dentist phobia :tongue2:). I can take 2mg and barely feel any notice, it just takes the edge off any nerves and mildly helps spasms. I too once had the white ones instead of the blue ones and now always ask for the blue ones as I can break them in half if I feel I don't want to take a whole 1mg tablet. The white ones are impossbile to break in half, even with one of those little pill cutting things.

 

My resistance to Valium et al was discovered by a dentist years and years ago in my 20s. I was to have some IV Valium sedation for some root canal treatment or something. As it was, I was already taking an excellent med for my IBS - Libraxin - which is sadly no longer available here, a combination of a lower dose of Librium and an anti-spasmodic (nothing, but absolutely nothing else, helps the awful bloating I can get). I had one Libraxin the night before, 10mg of Valium the night before, another Libraxin and 10mg Valium an hour before. I walked into his surgery bright as a star. He gave me the Valium IV, and 10 mins later, I'm sitting there asking when it's all going to happen, fully awake and as alert as hell. He was shocked and said he'd never seen anyone so resistant, so gave me gas on top of it. I can take Valium for, say 6 weeks or more, daily (not that I have in years and years, only twice that I can think of) and have absolutely no problem in just stopping it. I'm very lucky, I'd hate to be one of those who so easily get addicted to it...


Marina

(belated DX in June '05, SPMS)

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keira

Gabapentin - for neuropathic pain.

Seroxat - for anxiety and depression.

Oxybutyin patches - for bladder problems.

Paracetamol - as and when.

 

Due to see neuro on 19th Nov to start DMDs.

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debzsanderson

Mark is taking:

 

LDN 2.25ml (liquid)

Tolteradine to stop urine urgency

2 drops peppermint oil 2x day (in hot water)to stop indegestion.

Linseeds added to porridge (to help soften stools)

Ascorbic acid 500 mg daily

Starflower oil 500 mg daily

Omega 3 1000 mg daily

MSM 4 x 750 mg daily(helps digestion and stiffness)

 

If things get bad then he occasionally uses lactulose and Gaviscon!!

 

debz xx


Mark has PP MS but I am his partner and do the posts as he cant use the computer!!

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Gaynor

Jeez, my answers quick on this reply - nowt, nada, zilch.

 

I am 'lucky' in that; so far so good and it's a few painkillers now n' again if necessary.

 

Gaynor

 

 

 

oh did have DMS's offered - but have declined for now.

 

May change my mind at some point in the future, depending on relapses, where in the world I'm living etc.

 

Gaynor

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SkattyBell

I'm currntly taking

Tramadol 50 to 100mg as and when needd for pain.

Naproxen 500mg anti inflammatory.

Just added 2mg of diazepam? today into the mix. May have to add something to settle my stomach yet, we'll see how things go.

Sorry about the jumbled spelling... all of the above are kicking in!

Suffering severe upper back spasms and cramps that are radiating out & affecting arm/s hands ribs, chest, legs, feet and toes.

X-Ray just come back with spinal stenosis and moderate spine damage in two places, think it's cervix and thoiraic? area - still got more scans to come, I think?

5 years down the line and I've finally succumbed to the delights of medication! Still no definitive DX.

Previously amytryptilene worked on mild dose, then did nothing, upped dosage and reacted badly. Dicloflex previously tried and did absoloutely nothing apart from aggravate gut.

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Vegged Out
Shirl

Hi SkattyBell, this is the first time I've met you here, I think. I see you are an old-timer!

5 years down the line and I've finally succumbed to the delights of medication! Still no definitive DX.
I also note you are one of our Limbolanders. I was too, for 12 years, but light finally emerged from the tunnel I was in earlier this year.

 

Don't be afraid to use meds when you really need them but remember, once the pain/symptom eases, for me, it is not a good idea to stop the meds. I tried to reduce some meds last year and had the biggest attack of Trigeminal Neuralgia ever. i now stick firmly to the regime that works. In effect, prevention is better than cure. Though not a good situation, I know.



Shirley  "one day at a time"

 

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SkattyBell

Hi Shirl,

Yep I have'nt been around for a while as I was being pushed towards a dx of CFS/FMS/ ME

I've had some one on one counselling CBT sessions and it was through these sessions that they have decided to hang back with diagnosing the above as apparently I am not following the 'classic' path of CFS. Plus now, although I'm actually in a good state mentally and emotionally, unfortunately for me, my physical health has suddenly got a lot worse.

The meds whwere a necessity, my back has been so bad lately, some nights (it's worse at night/at rest) I've not been unable to move even a millimeter without searing pain and/or spasms.

I only take the tramadol when things are really bad as I know they can be addictive and boy.... it would be so easy to pop these babies for a lifetime! The first time I took 2 straight off and frightened myself.... thought I was going off to la-la land, never to return so now I stick with just the one! I don't much care for the anti inflammatories, but GP has said they are needed, I take peppermint tea to try and combat the stomach pain that these give me.

Might not get on with the diazepam, though, I felt pretty bad just with the first one, very ropey, tired and had a really nasty nightmare just before waking this morning, I'll give them a little while, but hoping things will settle down enough not to have to carry on with them. At least my new GP appears to be listening and acting, the thing is I have to have treatment for pre-cancerous cells (cervix) so the back thing is quite unnerving, I'm hoping it gets checked out quickly & thoroughly.

Nice to meet you, just wish it was in better circumstances, honey!

Must get some rest now, not doing myself any favours by staying up all hours.

Take Care,

Skatty.x

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mayb

Hi scatty sorry to hear that you are having such a rough time. I had to take naproxem for years as pain in various parts of me were treated this way. I finally stopped when it became obvious that this wasn't really doing me any good and my stomach was suffering. However, I did find that if I ate a banana before taking them it helped a lot to stop the stomach problems normally associated with these sorts of meds.

 

Take care and try not to worry about your back - lots of people have those precancerous cells removed and hear no more about them so don't jump ahead with your back problems, they already know why they think you have those from the xray results. Worry is the worst thing for symptoms although to stop worrying on demand is not possible I know. Be extra careful of yourself right now and treat yourself to whatever makes you feel good and I hope they get on with all of this and get it out of the way for you in double quick time.


Mayb

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Michelle

Hi Skatty,

 

Nice to see you back again. I'm still here :eep: plodding along. My eldest daughter had pre - cancerous cells in her cervix. I went with her to the appointment to have the cells frozen off. She was due to have 6 monthly check ups,but recently became pregnant with twin boys.

The proceedure that they use, is apparently a little uncomfortable,but bearable. Is this what they're planning for you?

On a totally different matter,

How are the children? Hope they are well.

Chat soon

 

Michelle x

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SkattyBell

Hi Michelle,

Nice to hear from you again, it feels wierd to be back here?!

The results from my last smear were a bit of a shock, to be honest. As I'm past the big 40 I just did'nt expct anything too out of the ordinary. I had my routine smear that came back with borderline changes, so I had to wait 6 months in the hope things would settle down of their own accord and I went back trying not to worry for my second smear which has jumped from borderline to stage 3 severe, so the upshot is I SHOULD be booked in for an endioscopy. Reading between the lines I think I will be treated as a matter of course - prevention..... to put it mildly I am papping myself! It's not helping as my GP said I should have heard about an appointment by now as it had all been put through to the appointment procedure, signed, stamped or whatever it is they do.... and still heard nothing..... GP is already concerned that I have'nt heard anything and is trying to find out why the hold up? Am due back in to see GP on Tues with my own notes/summary of symptoms, tests etc since 2003 with regards to all the other things (neuro-muscular/skeletal probs) that have been going on so they can decide where to go with things, I think if I have'nt heard anything, still he'll fight my corner re. the pre-cancerous cells.

Glad you're still plodding on. The kids are doing great, I love them to pieces & am so proud of them both. Thanks for asking, hope your eldest has no more occurrences.... wow! twin boys, a lot of fun to be had all round when they arrive, then?! How's the rest of your family doing?

Will pop in again soon,

Skatty. OXOXO

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SkattyBell

Just wondering if anyone knows if you can take amitryptelene alongside tramadol?

The diazepam is a no-no for me, along with the anti-inflammatories they are making me feel groggy, sick, depressed and bloated, I'm having nightmares and it's not really helping that much with pain at all and tingling/numbness is increased.

I am thinking of giving amitryptelene another go, starting on a low dose with tramadol as a top up only if needed, but not sure if both can be taken together?

Can anyone offer advice?

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mayb

I did take tramadol and the amys as well skatty - I only took the amytryptolyn (can't ever spell that right I'm sure) at night but the tramadol twice during the day. Nothing else touched my pain at the time and the tramadol didn't upset my stomach.


Mayb

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SkattyBell

Thanks,

Saw GP today. Decided to go back to amytrypteline on low dose and increase gradually if needed, plus tramadol when things are really bad.

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