MS in all its glory

byhookorbycrook

Not every gp is willing to write a script for it. Am on Tysabri too, but can't say. Oh yes, a hug is not the right name, severe pain would be more like it. Voltarol gel is good too.

fergal.b

We also got a cool memory foam mattress topper and a chillow that seems to help. Sorry about the LDN it seems to work for a lot of people maybe as word spreads it will become more available.



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Sparkles79

I was seen this week and have to have steroids Relapsing. .again! A few medications were tweaked and I was also prescribed Tegretol. Does anyone else take this for pain?
Sparkles x

byhookorbycrook

I took Tegretol when I was on betaferon but it caused liver function issues. I'm now on gabapentin. Féck to relapse. Hope steroids kick in asap.

Aurora Borealis

Any advice fellow MSers on where to go for life insurance cover? I'm very clueless about it all and am trying to research it before I apply for a mortgage. Or maybe I should start a separate thread?

Thanks in advance!

TouchingVirus

My mam will be diagnosed officially with it next Tuesday by her neuro but her cancer surgeon let the cat out of the bag two days ago in a meeting that that's why she's had some numbness the past two months and they put her on IV & oral Prednisone last month. I've just read this thread from start to finish and I'd like to say thanks to all the contributors who've spurned me to look at various bits and bobs about MS.

byhookorbycrook

Sorry to hear about your mam, let us know if you want any further information.

Sparkles79

Sorry to hear about your Mam..she seems to have enough on her plate already. sending a hug x

eimsRV

Evening all,

I've been reading through the posts over the past few weeks.

I'm a 35 year old female, I started experiencing symptoms in September of this year and after a stay in hospital the neurologist is sure I have MS but just waiting on lumbar puncture result before starting on first line treatment.

My initial symptoms were numbness in my left hand which over two days spread to my left side. This lasted a few weeks and I also had about 5 days of the hug!
After about a month my right side started being v sensitive to hot and cold and even now this is the symptom that effects me the most as it is constant. The numbness in my left has subsided.
In early October I started suffering unbearable pain in my neck and back of my head. I went to my gp who has just received my mri results from euro medic which confirmed I had lesions in my cervical spine, and some smaller lesions in my brain. GP immediately advised I go to a&e so I went to Beaumount where I was admitted for a week. They put me on 4 days of steroids and performed the required tests. (Lumbar puncture, chest X-rays, blood tests). I also attended physio and met the MS nurse.

At the moment I'm on Lyrica. In December or January I'll start the injections, at this point I'm thinking of betaferon but need to see if consultant agrees.

Sorry for the long post but hope it serves as an intro

:-)

Closov

Welcome eimsRV, sounds like you've had a rough few months and it's going to be a pretty quick diagnosis, it must be only barely sinking in? If you haven't already, register with your local ms society office, personally I found them better than any GPs or consultants so far. A few weeks delay on starting the dmds won't do any harm. It won't make Xmas better, but it could make it worse, speaking from my own (bad) experience last year. Good luck

eimsRV

Thanks Closov. Yea its all happened very quickly, I'd had some symptoms in the past like numb legs but never thought anything of it.
I've looked at the MS Society site but haven't contacted them, I'll do that now - thanks for the tip

byhookorbycrook

Any of the injectables don't work as well as Tysabri, but I think it's not yet offered as a 1st line treatment here. Worth asking about, though.

eimsRV

byhookorbycrook wrote: »

Any of the injectables don't work as well as Tysabri, but I think it's not yet offered as a 1st line treatment here. Worth asking about, though.

Thanks, I did mention it to the MS nurse and she said that the consultant hadn't asked her to discuss Tysabri with me, she said in her experience people are put on Tysabri if one of the other treatments isn't effective any more. Is Tysabri a treatment that you can stay on for years?
I will ask the consultant when I'm back in clinic in December.

BohToffee

Evening all, has anyone experience getting a medical card due to the condition? Or fir those less mobile who may require use of a chair, is it poasible to get a mobility travel pass??

Sparkles79

Has anyone ever had steroids and not found any benefit from them? I had them 2 weeks ago and haven't felt that 'duracell bunny' surge of energy yet. I feel the same to be honest and it's very different from the other times I've had them.
My neuro was querying whether or not my MS had moved from R&R to a more progressive form at the beginning of this year but he decided to give me another year as he wasn't certain. This has me a bit worried tbh. 😕

byhookorbycrook

Any time I had steroids, I got the munchies and then came out of a relapse a bit quicker. What treatment are you on again, Sparkles?

Sparkles79

Hi there! Tysabri. I thought it would make me feel brighter and give me more energy like they usually do, I just feel the same though.

byhookorbycrook

I see some people on Facebook groups claiming all kinds of things. For me, being relapse free is huge thing. Is your neuro thinking of taking you off it??

Salmotrutta

Thought I'd post something positive
Just watched this, very inspiring short (12 min) film about a high school MSer in the US who won her state middle distance running championship, although she can't feel her legs when she runs, and collapses at the finish unable to walk. Makes me more determined than ever to stay active and do a few more challenges next year. I'm newly diagnosed so haven't lost any mobility yet, and am determined to do everything I can to keep it that way.

Put the old http:\\ before the youtu.be/kpA-FsKLA6A (can't post links as I don't have enough posts)

Sparkles79

No, he wants me to stay on it. I really don't find any benefit from it, I've been on it for nearly 2 years. I haven't got any worse though either, so it must be doing something.

Sparkles79

Salmotrutta wrote: »

Thought I'd post something positive
Just watched this, very inspiring short (12 min) film about a high school MSer in the US who won her state middle distance running championship, although she can't feel her legs when she runs, and collapses at the finish unable to walk. Makes me more determined than ever to stay active and do a few more challenges next year. I'm newly diagnosed so haven't lost any mobility yet, and am determined to do everything I can to keep it that way.

Put the old http:\\ before the youtu.be/kpA-FsKLA6A (can't post links as I don't have enough posts)

You HAVE to stay positive! Granted, there'll be days when even getting out of bed to get the littlies to school will be the most you'll accomplish but you have to remember to appreciate and validate the good days. How long have you been diagnosed Salmotrutta? I've just passed the 4 year mark

Salmotrutta

Sparkles79 wrote: »

You HAVE to stay positive! Granted, there'll be days when even getting out of bed to get the littlies to school will be the most you'll accomplish but you have to remember to appreciate and validate the good days. How long have you been diagnosed Salmotrutta? I've just passed the 4 year mark

I'm only diagnosed 4 months or so after a second relapse. On Gilenya now. Very lucky so far, just some lasting numbness but no other permanent symptoms - no fatigue thank God. I did the Sea2Summit race a couple of weeks ago - very slow but got to the finish line

Sparkles79

well done! are you from Mayo?

byhookorbycrook

I haven't had magnificent bursts of energy, improved my balance, started long distance running or anything since I started Tysabri in Jan 2009. However I AM relapse free and glad of that.

Salmotrutta

Sparkles79 wrote: »

well done! are you from Mayo?

Cheers, no I'm in Galway.

ash23

Sparkles79 wrote: »

well done! are you from Mayo?

I am

Didn't do the sea2summit though!

eimsRV

Hi all,

Hope everyone is keeping well. I'm back in work now, get times when I'm really tired but in general feeling ok. Have had a couple of occasions where I was standing up and just lost my balance, never felt that before
I'm in with my consultant in Beaumont on Wednesday where I expect to get my official diagnosis. I've been putting my list of Qs together, stuff like first line treatment (Betaferon), letter advising I can drive, not sure what else to ask. Do most people have an annual apt with their consultant?

Thanks

Loretogirl

Has any person started using Alemtuzutmab (Lemtrada)?. My doctor is due to start me on this drug next year. I am taking Gilenya at present. I am sure I will have to do tests to see if I am suitable.

fergal.b

Loretogirl wrote: »

Has any person started using Alemtuzutmab (Lemtrada)?. My doctor is due to start me on this drug next year. I am taking Gilenya at present. I am sure I will have to do tests to see if I am suitable.

Hi Loretogirl are you having any problems with the Gilienya at the moment or do you find it's not working for you.



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Loretogirl

fergal.b

No I am not having problems, I did have 2 relapses. The doctor just said I would start the new meds. next year.

I hoped there would be someone else using it and get info on it - good and bad.