MS in all its glory

Thanks for the replies guys! My head is completely gone with all the to-ing and fro-ing and I'm getting nowhere. I have fibromyalgia so everything gets pegged onto that as they don't know what it is. So at present I'm close to a nervous breakdown, can't feel my feet most days/some days can barely walk with my legs/my hand are now starting to join the acting up club and 3 more pages of symptoms - all of which are getting worse, and I now have no section looking after me because I contacted the rheumy and he doesn't want to know me either (go see my gp). I have literally been passed around like a pass the parcel and left on the empty chair and I'm so angry and frustrated which is wasting energy I don't have. I'm just lost and feeling very much like a nuisance or someone "looking for attention" as its clearly "all in my head" just like the fibro was for years. Can anyone recommend a good consultant, be it neuro or rheumy or some magic person who actually likes awkward cases, I will try anything now? Also not medical advice but if you guys were in my situation what direction would you take or how would you try to get some answers? And, if you don't mind me asking, how many neurological symptoms did you have before anyone listened? Sorry for the ranting btw, I know I'm not exactly in the right forum but I'm just really lost atm

Nigel Fairservice wrote: »

Sorry it's a bit of a late reply. I had my gallbladder removed a while back ago. The fact I had MS barely registered with the surgeon. It wasn't even mentioned again after I said it to him when we were going through my medical history. No MS complications with the GA or post surgery.

Does anyone have problems with heat? I'm constantly too hot. I can't wear jumpers or be in any rooms with central heating or fires lighting. If the heating is on in the house I'm sitting next to an open window. I'm completely lethargic in the heat (this past summer was awful!) but I feel more normal and able to do things in the colder weather.

Yeah heat whacks me out, but I've noticed from being on holidays in Spain dry heat isn't near as bad . The humid hot weather in july/August here is awful though. I use cooling wristbands x4 which help but sleep at night is hard

Nigel Fairservice wrote: »

Does anyone know if it's possible to get a few months supply of MS medication up front from the HSE on the LTI scheme? I may need to head away with work soon for 2/3 months.

I got 2 months from my pharmacy before when we were going on honeymoon and I was going to be gone over 4 weeks. They didn't have any problem with it, but then again I know them well by now.

embee wrote: »

What oral medication is mad expensive? Only ones that cost insane money are lemtrada and tysabri, they're comfortably the most expensive meds for MS in Ireland.

Gilenya is not cheap either AFAIK, I was told before in the region of 1k/month, but that may have changed since.

Nigel Fairservice wrote: »

Heat completely finishes me off. This past summer was hard to deal with. I wasn't fit for a thing. I prefer the winter because I'm better able to cope generally speaking and I'm more up to doing things. I think some people with MS struggle with the cold but I'm the complete opposite! I'm disappointed this winter has been so mild. I'm going to bed at night these days with the window open pac:

Do you mind me asking what wristbands you use? I might get some for the summer for out and about and for work.

These ones I think, soak then in water for a while then put on

https://www.amazon.co.uk/gp/aw/d/B00BG37UR6

tinofapples wrote: »

Hi Guys,

I'm due back in with my consultant the end of this month, in my previous meeting with him he discussed the treatment options, Tysabri, Rituximab & Mavenclad specifically. He seemed to be pointing towards Rituximab but also mentioned Ocrevus (I think he said it hadn't been approved). IIRC he said that Rituximab would only be possible depending on a test for a JC virus. Due to the gaps between consultations so many questions go round in my head.

Having had prior experience would ye be happy with Rituximab as treatment ? I had my MRI scan during the summer of 2017, would I be unreasonable to ask for a fresh one to see if the legions/inflammation has increased/decreased ? Wouldn't it be a good landmark prior to any treatment ?

My case is complicated by the presence of another condition called HSP (Hereditary spastic paraplegia) and I think my consultant is concerned/confused by which condition is causing my issues and worried that any treatment intended for MS might be futile given the presence of HSP, in my case SPG4.

So many questions

Thanks !!

I would advise another MRI.

I was really enthusiastic to try rituximab as a treatment. It’s an infusion twice a year and by all accounts it’s very effective. However on my first infusion I developed a very bad allergy quite quickly so unfortunately that treatment is out for me. Ovrevus has different proteins (human based not mouse based) so when it comes in I would love to give that a try. MS Ireland were due to meet Simon Harris about it but I haven’t heard the outcome of that meeting.

Hope whatever you decide goes well for you.

Martina1991 wrote: »

Hello all,

My father has primary progressive MS for about 22 years now. Over the last few months he's been in and out of hospital with high blood pressure. Both the GP and doctors in hospital have been playing around with various medications and dosage but he is still having incidences of both high and low blood pressure which results in him back in hospital. He also appears to be having recurrent infections (they think UTI) that he cannot seem to clear.

He's on so much medication and lately he's also been very depressed and not engaging in conversation, as well as lack of appetite.
Has anyone here also been treated for depression and if so has medication improved your situation? It's so frustrating and heartbreaking not only to see him physically disabled but also to see the person he is be effected as well.

Sorry to hear about your Dad, it can't be easy for him or you seeing him this way. I'm a newbie in this forum so can't offer much other than good will

I really hope things improve.

My consultant prescribed Amadatine to me two weeks ago for fatigue, haven't seen any great difference apart from sleeping very poorly at night the last 5/6 nights. Have any of you had similar experience with it? I'm considering dropping it but will most likely give it at least another couple of days.

Nigel Fairservice wrote:

I'm not on anything for fatigue. My neurologist never even mentioned it to me that there were medications available for it when I spoke to her about it. I had insomnia for a few years from my late teens to my mid 20s. Hard to imagine there was a time I had trouble sleeping now! I'm on another medication for a MS related problem (bladder). Sometimes I think it's great and some days I think it's useless. Stick with the medication for a while longer to get better picture of effectiveness over time. Good to know there's something out there for it though. Now if we had a magic pill for heat sensitivity!

I'm on betmiga for the bladder issues as well as Laxido for bowel.