MS stuff

[TheClaws]

Great to see this new area set up ... in this thread, could we talk about our MS issues? Anything to do with symptoms, treatments, medications, alternative therapies, questions, chat - even a general let off steam is fine

I was officially dx RRMS, 2014 after further relapse. I was DX with Transverse Myelitis in 2012, (CIS). Started on Rebif, had problems, skin. Moved onto Tecfidera, more success on this drug, the first few days of taking Tec were very difficult for my, very sick, flushing etc, after a rough start, I was very close to giving up, however I have stuck with it and I have now been on Tec nearly two years. Fatigue, mobility, cog fog, memory, dizziness, visual symptoms, numbness, weakness are all symptoms for me. But hey everyone says how great I look, lol! It can be very frustrating, when I turn up to see HCP and they question if I am me! (asked three times by a GP covering for my regular Dr, physio etc, how their opinion quickly changes on examination!). Obviously, if you have MS you should not have long blonde hair and make up on, I always say I look ok on the outside, a different story on the inside! I have a great Neuro, neuro sec and MS nurse, GP etc and for that I consider myself one of the lucky ones.

Hi YogaGirl - do you do yoga? I used to do that casually, and really liked it, but unfortunately it fell off my radar. If you do still practice, do you find it helps with your symptoms?

Hiya, yes I do! Started nearly two years ago, when my local MS Society group, started up a "yoga for the less able" group, at a local church hall, most of the yoga is chair based. It's a fab group, usually 8 or so, £5 a session, pay as you go. Most at the group has MS, some also recovering from surgery etc. Yoga was always something I wanted to try in any case. I have realised through yoga that I haven't breathed properly for 45 years! Lol. I really love it. Perhaps you could make some enquiries to see if there is anything going on like this in your area. I also do an MS exercise class one a week, at the local physio centre. I am not fit by any stretch of the imagination lol! But I think both help me to relax and have increased my core strength, keen to try and improve my balance, which is very off.

Hi, can i bookmark this thread? My sister is awaiting the results of a lumbar puncture to diagnose the type of ms she has. She previously had a MRI showing demyelination on her spine.

Yogagirl, that sounds fabulous. I'll have to look around. I think any exercise is better than none, but why not do something you really like? Helps the motivation I think.

Bananamanfan, you're very welcome to bookmark, and I hope your sister's results are good. Let us know?

claws see what you can find out, I have to say yoga is the highlight of my week, the people in my group are lovely, and we all support each other, and just laugh if anyone gets it wrong, we don't take it too seriously, it is really good fun. Good luck I hope you find a group near you.

Saw Neuro last Friday, he wants to move me up to 2nd line DMD, so either Tysabri or Lemtrada. My original preference was Lemtrada, but asked him which he would have if it was him, and he said Tysabri as it has wonderful results.
So I need to make a decision. All depending on JC virus test results of course.
Will be seeing MS nurse for the discussion next month and they'll do the test then too.

nonetcurtains, it is a big decision. I've been on Tysabri for more than four years now, and I'm JC virus positive. But I'm also the most stable I've ever been since I was diagnosed (1996). I don't get side effects from Tysabri apart from some tiredness and headaches on the day of infusion. It's been very positive for me

I'm marking my place so I can come back properly later - kids are running loose downstairs and need some supervision!

In brief, diagnosed 9 years ago but no treatment offered as BFing. Since had 2 other kids, and then relapse in November. About to start tecfidera.

Also have T1 diabetes, which can cause difficulties working out which symptoms are due to which iyswim.

Thank you for starting this thread!

I was diagnosed last year after suddenly losing all feeling from the chest down and being unable to walk - this was the first episode that I was aware of! I was 46, no prior issues that I knew of.

I should also say that I am in Canada, so treatment may be different here.

I was sent to the MS clinic and they prescribed me Copaxone but I didn't end up filling the prescription for a number of reasons. I have been mostly OK since the first episode. I had my first follow up MRI a couple of weeks ago so I guess we'll see! I won't get the results until September though, at my next appointment.

I try to follow the OMS diet, not always successfully. I can't really say if it helps or not but it makes me feel like I am being pro-active!

I'm glad to find some fellow "MS Warriors"!

So, can anyone give me info about their experience with tecfidera? I've been told to watch out for hot flushes, and take aspirin 30 mins before taking it if I get them. Also brain infection (cheerful thought...) but that's unlikely.

Also, I was offered baclofen (I think?) for muscle spasms, is that something that you just take forever, or as needed? I did ask, but my neuro is quite dismissive, also speaks v heavily accented English so is hard to understand, and I forgot to ask the MS nurse when I saw her. GP doesn't know (and also refused to prescribe a 5 day course of steroids as he reckoned the neuro got the dose wrong, so I'm not confident in them anyway!).

Banana just a thing ,a lp wont tell the type of ms, it just looks for oliclonal banding in the fluid (protien) and if its not in the blood sample then thats indicative of imflamation, so a ms result.

RueDeWakening
I've taken Baclofen for a year or so now, 10mg twice a day.

I wouldn't be without it, it's made a huge difference to me as I had spasms in my legs every evening and throughout the night - every 17 seconds. I was sleeping for a maximum of two hours a night and it was killing me.
Baclofen has made my muscles weaker, and I often fall asleep for 20 minutes or so about an hour after taking it, so I take my first dose when I get home from work around 6pm, and my second at around 10 - 10.30pm.
I sleep 6 - 7 hours a night now. I've got my life back.

Hi all, great to see a thread like this. I'm is similar situation to PinkBuffalo, my DM was diagnosed with primary progressive MS 10 years ago this month. Sadly there is also nothing else that can be done for Mum, although she doesn't currently have a catheter she is incontinent now and unable to move unless in a wheelchair. She's cared for by my wonderful DF, who receives no formal respite and is in his 70s and still working PT from home. I am very aware that as the years progress we too, as a family, will need to consider residential care for Mum. Apologies if I've put a downer on things, wonderful to hear of those of you for whom the treatments are proving beneficial!

Thanks FruitBadger and for your Mum and Dad.

I've finally started tecfidera, and so far so good - mild flushes occasionally a few hours after I take it, which aren't bothering me, and nothing else that I've noticed so far. I'm still on the intro dose though, it'll increase this weekend so hopefully I'll tolerate that as well.

I've been told to take 4000 units of vit D a day, anyone know the easiest/best/cheapest way to source this?

Rue Can you get the vit D from your pharmacy or order some online? I have a bottle from the local chemist - 1000 units, but you might be able to find a higher dosage available OTC.

A thread I can join sadly. Hi everyone.

I was Cx last August, so very new to all this. Went with pins and needles in my hands and feet. The neuro seemed convinced it was a symptom of my Anxiety (have had panic attacks, OCD, GAD for many years so not a surprise to be told that). Got sent for various tests including 2 MRI's.

A second neuro showed my my spine MRI and there was no mistaking the lessions on my spinal column.

Im now in Amtriplyine for the pains in my hands and plegridy for the MS. They offered Lemtrada and Techfidera, but tbh, they all including plegridy terrify me (I am medicine adverse unless essential). Luckily the MS nurse could see my terror at all the options and kindly suggested the plegridy would be a better starting DMD and if that doesnt work, then hopefully I will be in a better place to accept something stronger.

I'm still working despite the pain, work have been very supportive and have offered to change my hours or work conditions if I deem it necessary, which I havent yet.

I applied for PIP and had a face to face last month and am awaiting for the results of that. Again Im not hopeful, but with my OCD normal life is a struggle.

My question is blue badges. I still walk and drive, but am finding already some days my balance is off, or I am very tired and struggle to do things if I have to park too far away?

i had my plegridy last night, and todays its a struggle just walking upstairs to the loo.

Hi all, it's good to see this thread, iyswim, but I'm sorry there's so many affected by MS.

I'm an RRMSer, diagnosed two years ago and been on tecfidera ever since. I've never had a big relapse, but a lot of small things over the years, and my medical history suggests that I've probably had MS for 20 years. My biggest problems are fatigue, balance and a shedload of sensory stuff (numbness, pins and needles, random sensations like I've been burned or wet myself!). But actually, I'm lucky and mostly well.

Somebody asked about vit D - I get it on Amazon or ebay, 10,000iu. I think you can only get a much lower dose on prescription.

Rue how are you getting on on the higher dose of tec?

Hello. Could I have an handhold please? I had brain MRI and Spine MRI done 2 weeks ago. Brain was via GP, Spine via my Spinal Surgeon. I telephoned my GP for result of scan and they said I needed to see GP to discuss result. Scared I have MS.

hand here to hold claire, but please try not to think about it too much, it might not be.

So just come back from GP. Urgent referral to a Neurologist which he did there and then.

Scan if I remember correctly - multiple tiny areas of signal white matter and a partially empty cella.

Doesn't look to good does it?

sorry non-specific white matter

@ Claire, try not to worry, I have RRMS whilst of course I would prefer not to have received this dx, attitude to it is so important. If you do get a confirmed dx, there are many different disease modifying therapies, things are very different for ms'ers these days. But a positive mental attitude is so important. I was diagnosed officially in 2014, but was told in 2012 by neuro that he thought it was MS as two areas of inflammation found on MRI in my spinal cord and also lesions found on my brain. It's honestly not all doom and gloom, you have to focus on what you can do rather than what you can't. I have a say I have a fantastic MS nurse and Neurologist caring for me, I have meet some truly amazing people since my dx. It may not be MS, so try to live in the moment and avoid stress, but I can honestly say, MS is a scary prospect, but not the end of the world. Wishing you all the best. X

@ Claire. I just wanted to respond to you and briefly share my (perhaps unusual/fortunate) story. I was diagnosed with RRMS 18 years ago after a rapid succession of symptoms/conditions starting with labyrinthitis/vertigo, followed by what turned out to be optic neuritis in both eyes and almost complete numbness all over. mri and lumbar puncture led to diagnosis at 26. I think it would have helped me at the time to hear about someone like me who, 18 years on has never been on any drugs and after another few episodes hasn't relapsed since 2005 (touch wood!) I won't pretend I'm symptom-free because I'm certainly not but between us me and my MS bumble along OK together. I have always worked full time and I do know how very very lucky I am. My neurologist won't quite fully commit to a benign diagnosis now but says my MS is "behaving quietly" Another poster mentioned attitude and I'm a firm believer that this plays a definite part. The day I was diagnosed I was steered in the direction of a display of leaflets on mobility aids and home adaptations. I just wanted someone in your position to hear an alternative story. Even if your test results are positive, it's not guaranteed to be the end of your world as you know it, all the best.