MS in all its glory

eimsRV

my leg cramps and restlessness legs has certainly eased with the cooler temps.

My brain fog and focus is becoming a bigger issue, especially with work. I’m managing at the moment but thinking longer term, I thankfully have good income protection thru work. Have others been able to reduce hours and get some payment thru income protection? Or is it a case of all or nothing? I don’t want to completely stop working but feeling the added stress isn’t helping my over all health.

cj maxx

https://www.boards.ie/discussion/comment/122787882#Comment_122787882

I can’t answer that as I was unemployed when diagnosed , ( manual labour ) but it’s not all or nothing . See how it progresses and make decisions on where you are . I know of people with MS who are retired but well able to work, etc

GBX

Recently had a brain MRI and no change to any lesions, thankfully 🤞. Long may it continue.

Hopefully everyone is ok and surviving out there :)

bookworms

Just back from a deep tissue massage for my legs this evening. I enjoyed every minute. My legs feel less stiff and heavy. The real test comes in the morning after a night in bed.

sqooka

Hi everyone, I'm wondering does anyone here have experience with managing ms during pregnancy? This is part question, part whinge....tl:dr anyone with experience of treatment during pregnancy I would be so grateful if you could tell me what you were on and all ok.

Was anyone allowed to go on interferon/copaxone while trying to conceive? Or were you on tysabri or ocrevus and how was it? I was happy out on fingolimod for years but came off over a year ago to try to conceive (clearly it's not going well but that's another story). At the time I had asked about switching to interferon or copaxone as I was afraid of a rebound with coming off gilenya, but I was told I couldn't go on those. I don't remember at the time, I may have been offered tysabri instead, I'm not sure, but either way I ended up on nothing.

I had an MRI in August last year which showed new activity and I had realised when they told me about it at my appointment in February that it was possible that some numbness I had to put down to a leg injury may have been a symptom. When discussing options with me they suggested tysabri or ocrevus. I'm aware these are brilliant, safe, effective medications.

However, I had hoped this wouldn't be long term and that I could go back to fingolimod after all this and I'm afraid if I go onto one of those I won't be able to. I'm also worried about going on something that should ideally be for a short time until I'm pregnant (and so would not offer much benefit to me) that would not be ideal for pregnancy, given ms activity is reduced during pregnancy anyway. I'd be so much happier with something that's been around a long time (without wanting to resort to cider vinegar!). The reality is because of my age I really only have a little over a year to try anyway before I have to accept it's not happening. In the longer term I'm sure I'll be delighted to have those treatments available to me.

toffeeshel

Hi All. I have PPMS. Diagnosed about 4 years ago. My significant symptom is foot drop. I have just been approved for Fampyra. I am wondering if any of you have any experience of using it. Pros and cons. Long term or short term. Thanks in advance

gamerguy1

Hi, I did try famprya a few years ago but it did nothing for me then. I was alot better then I am now though. Lots of people say great things about it. Only thing is the not eating 1 hour before and after taking it,no real side effects. I'm sure there is people here who might give you better answers. A group on Facebook may help you.

byhookorbycrook

https://www.boards.ie/discussion/comment/123231148#Comment_123231148

I was involved in the campaign to get it funded. It's mainly meant to help walking speed, but only 1/3 of MS-ers on average respond to it. I find it's helped with spasticity and stamina. I haven't found any downside.

toffeeshel

I went ahead and started taking Fampyra last Thursday. I was worried about some of the side effects that I had been warned about but nothing so far. Hopefully I will see some improvement in my walking

cj maxx

I had a google for it but it’s not given in NI on NHS . Just England and Scotland I think

eimsRV

was at my neurologist today, I’m really battling with fatigue. She has prescribed Provigal. Does anyone have any experience with effectiveness and side effects? Thanks

cj maxx

https://www.boards.ie/discussion/comment/123293795#Comment_123293795

I have no experience of it , but with my constant napping during the day when I finally get to see my neurologist I’ll ask him about it . I think I need more than 6 baclofen a day , Leg tremors seem to be getting more frequent

gamerguy1

Warm weather is back early this year. Much too hot for me, my limited walking is alot worse. Few months of this will be tough. Legs feel like concrete blocks on them

bookworms

Or walking through molasses

Nigel Fairservice

Struggling in the heat as well. Everyone in my office is very enthusiastic about the good weather but I'm the total opposite. I dislike it but I'm afraid to say it beacuse everyone will think it's strange 😅 A cold blue sky day in Autumn is more my thing.

gamerguy1

It's lovely weather but just a bit too warm, it was a bit of cooler few days ago but today it's dead heat. I think people know I hate warm weather now. Nice autumn or winter weather is my favourite. It's hell trying to walk a few steps. Glad I'm not the only person not enjoying this weather

snuffysshop

how did you get on? I had a lumbar puncture yesterday I have symptoms ever since the v too

eimsRV

I’ve been taking provigil (also known as modafinil) for a month now for fatigue. I feel it has improved things for me, I’ve had no side effects, so will continue on with it. Just wanted to share with the group in case anyone else considering it.

gamerguy1

https://www.boards.ie/discussion/comment/123392941#Comment_123392941

Good to know it's working for you and has improved the fatigue. It's something I may have a look at getting prescribed from neuro.

cj maxx

A bit worried as I haven't had a MRI in years , but those little kicks I had in my right foot are now in my left too .

GBX

Hope everyone is as well and strong as can be. Happy (? Probably the wrong word but ) happy world ms day 💪