MS in all its glory

eimsRV

I’d my gall bladder removed two weeks ago by general anaesthetic. They warned it could trigger a flare up or relapse. The last few days I’ve been feeling off, head foggy and sometimes unable to focus, pins and needles, light headed. Has anyone any experience on how a GA impacted them and if they’d a flare up was it short? Feeing utterly down 😕

embee

Jesus, my legs tonight. They feel like they're made of lead, hard to drag them around. Finally dragged them into the bed and I am numb from the mid-thigh down. Feet are just dead numb, can't waggle the toes on my right foot at all. The right foot is the one with the foot drop, but they're not usually this bad. I have the usual racing heart and sweating going on from my overactive thyroid... I'm wondering if my metabolism constantly flying (despite beta blockers and medication) could be causing all this? My head is wrecked hope you're all okay.

Heno106

Hi,

I'm going through a tough time with my MS and missing work because of it, constantly have that feeling of standing up too quickly but I could be standing for ages and constantly feel it, it's horrible, along with my right foot spasming. Have many people had this feeling and what helped you? My neuro has asked me to go on gabapentin to try help it, I'm not keen to go on it because he hasn't given me any sort of explanation as to what this symptom is. I'm not one to just throw meds into my body without knowing why I need it. I take gilenya each day and that works a treat to be fair but the symptoms have progressed while the lesions have stopped progressing since starting on it 2 and a hal years ago, thankfully. Any insight into this feeling or what you did to help it would be great.

Thank you.

roses479

Hi,
I'm going anon for this one (family members on boards) but has anyone ever heard that the lesions typically show up in a spider like pattern? Basically I have some lesions and some symptoms and was referred on the back of these from my rhuemey (he believed MS) but the neuro guy said I only have 8 or 9 neuro symptoms and the lesions didn't show up in the typical spider like radial pattern so he believes its not neurological or ms and referred me back to my rheumy. Before I go and tear the rheumy a new one, should I ask for a second opinion or does this sound right to you guys? I'm not looking for medical advice more just what would you do advice? Or any advice in general?

tinofapples

I'll share this link in the unlikely event that some of you aren't aware of this youtuber (Aaron Boster) :

https://www.youtube.com/channel/UCkQopiiFbAo0zS_9BmRF3Bg

I've watched quite a few of his videos and they are quite informative and a source of knowledge in between appointments

ash23

roses479 wrote: »

Hi,
I'm going anon for this one (family members on boards) but has anyone ever heard that the lesions typically show up in a spider like pattern? Basically I have some lesions and some symptoms and was referred on the back of these from my rhuemey (he believed MS) but the neuro guy said I only have 8 or 9 neuro symptoms and the lesions didn't show up in the typical spider like radial pattern so he believes its not neurological or ms and referred me back to my rheumy. Before I go and tear the rheumy a new one, should I ask for a second opinion or does this sound right to you guys? I'm not looking for medical advice more just what would you do advice? Or any advice in general?

Never heard of any pattern or noticed any pattern in my lesions. A quick google brings nothing up either.

I only have a smattering of lesions and they form no pattern that I can tell.

byhookorbycrook

Never heard of a spider thing either, most of my lesions are in my c spine, though there are a few brain ones, that would be some size of a spider! Neuro showed me the original MRIs and no pattern was evident.
Some good "typical " images here:
http://www.radiologyassistant.nl/en/p4556dea65db62/multiple-sclerosis.html

byhookorbycrook

Heno106 wrote: »

Hi,

I'm going through a tough time with my MS and missing work because of it, constantly have that feeling of standing up too quickly but I could be standing for ages and constantly feel it, it's horrible, along with my right foot spasming. Have many people had this feeling and what helped you? My neuro has asked me to go on gabapentin to try help it, I'm not keen to go on it because he hasn't given me any sort of explanation as to what this symptom is. I'm not one to just throw meds into my body without knowing why I need it. I take gilenya each day and that works a treat to be fair but the symptoms have progressed while the lesions have stopped progressing since starting on it 2 and a hal years ago, thankfully. Any insight into this feeling or what you did to help it would be great.

Thank you.

Do you mean you feel unsteady on your feet? Gabapentin will help in sorting neuropathic stuff and can help with some spacticity as well

roses479

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

embee

Ended up in for three days of steroids in early November, had a relapse, couldn't see properly at all and entire right side went weak and wobbly. MRI showed four new lesions since my last MRI four months previously in July. I was used as an exam, medical students had to get a history based on why I'd presented to hospital, they weren't told of my diagnosis and had to guess it. Four of them came, three of time didn't guess MS, they all just assumed I'd had a stroke. The fourth got it, thankfully. Pretty worrying they couldn't get it, one of them, in his final year, told me I was the first person with MS that he'd encountered in the clinical setting in six years. I was and still am astonished at this. I had applied the week after this to participate in a patient and advocacy course, got word today that I was successful and will start it in January. People need to be woken up, there's still so much ignorance oh there!

byhookorbycrook

Ah, Embee, sorry to hear it. How are you now? I've talked to the odd student at Tysabri. Our neuro encourages us to ask questions, to be informed and to inform others. Well done on the advocacy initiative.

When I was in the local hospital with a ruptured appendix,I was trying to impress on them that Tysabri and infections aren't good friends. None of them had even heard of it, didn't want to listen- it was a student dr. who finally made them listen. Only for her!!

Nigel Fairservice

eimsRV wrote: »

I’d my gall bladder removed two weeks ago by general anaesthetic. They warned it could trigger a flare up or relapse. The last few days I’ve been feeling off, head foggy and sometimes unable to focus, pins and needles, light headed. Has anyone any experience on how a GA impacted them and if they’d a flare up was it short? Feeing utterly down ��

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.

byhookorbycrook

Yeah, can’t do heat either ! Currently in MIL’s kitchen which is at tropical temperature. Hence I’m in summer type tops and the door is open when I can get away with it !

Nigel Fairservice

byhookorbycrook wrote: »

Yeah, can’t do heat either ! Currently in MIL’s kitchen which is at tropical temperature. Hence I’m in summer type tops and the door is open when I can get away with it !

Ha I'm the same. I'm still wearing my summer clothes. I was in Spain recently. The locals were wearing coats, hats and scarves. I was going around in a t-shirt, even at night. It feels like I can't regulate my body temperature anymore. I think I'll say it to my neurologist when I see her next. Hopefully she'll can recommend or prescribe something to help control it.

byhookorbycrook

Had initially put it down to betaferon / Avonex back along , but it persisted when I changed to Tysabri in 2009 .

Nigel Fairservice

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.

byhookorbycrook

I know our local pharmacy only do a month at a time.

Nigel Fairservice

byhookorbycrook wrote: »

I know our local pharmacy only do a month at a time.

My own pharmacy is the same, a month at a time. Considering the cost of the medication (I know the one I'm on is very expensive) I don't know if they'll give me longer than a month at a time.

byhookorbycrook

Are you on injections?

Nigel Fairservice

byhookorbycrook wrote: »

Are you on injections?

No, tablets.

cj maxx

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

embee

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.

Nigel Fairservice

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.

I'm on Techfidera. I think it's in the region of €15,000 a year.

Nigel Fairservice

cjmc wrote: »

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

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.

Loveinapril

Nigel Fairservice wrote: »

I'm on Techfidera. I think it's in the region of €15,000 a year.

I am currently off Tecfidera because I am pregnant but was on it for a few months after my last pregnancy. How do you find it? I get really bad hot flushes (actually very painful burning on my face, it looks sunburnt) for an hour or two in the middle of the day.

Salmotrutta

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

Loveinapril wrote: »

I am currently off Tecfidera because I am pregnant but was on it for a few months after my last pregnancy. How do you find it? I get really bad hot flushes (actually very painful burning on my face, it looks sunburnt) for an hour or two in the middle of the day.

I find it ok now but it wasn't great when I first started. I get flushes too but not as bad as you by the sounds of it. My cheeks burn for a while but it is not that bad. It sort of feels like you would if got really embarrassed by something . My scalp feels funny too during the flushing.There doesn't seem to be any rhythm to the face flushing. It comes and goes. When I first started on Tecfidera I'd wake up in the middle of the night and my entire body would be burning and would be extremely red. Any movement in bed against the sheets or duvet would set off a bad burning itch. It wasn't pleasant. That hasn't happened in a while but the first few months on Techfidera were rough.

cj maxx

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

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 !!

Carrie6OD

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.