MS in all its glory

cj maxx

Lollipops23 wrote: »

This kind of stuff makes me disproportionally angry. I know it shouldn't, but it just feeds into the list of BS 'cures'.

Now lollipops, it only works if you BELIEVE !

NewMan1982

I’ve been having sciatic like pains in both legs and other nerve pain in my arms lately. Got tested at the doctors today and one of my reflexes is abnormal. The Babinski Reflex.

I’ve been referred for an MRI and to see a neurologist.

I know googling is the worst thing you can do but MS keeps coming up as a possibility for the symptoms I have.

adam88

Back from Spain Monday morning and came back with some virus. By god I thought I was a gonner, my balance went from me. Felt very like the time I was diagnosed with MS. Frightening. All cleared up now thankfully

Lollipops23

adam88 wrote: »

Back from Spain Monday morning and came back with some virus. By god I thought I was a gonner, my balance went from me. Felt very like the time I was diagnosed with MS. Frightening. All cleared up now thankfully

I had a simple head cold last week and I was truly knocked for six. Fatigue is still high, my hand numbness is still bad. Viruses really exacerbate symptoms and even something as minor as a cold affects them.

byhookorbycrook

NewMan1982 wrote: »

I’ve been having sciatic like pains in both legs and other nerve pain in my arms lately. Got tested at the doctors today and one of my reflexes is abnormal. The Babinski Reflex.

I’ve been referred for an MRI and to see a neurologist.

I know googling is the worst thing you can do but MS keeps coming up as a possibility for the symptoms I have.

Babinski isn't exclusive to MS, but can be part of it. How soon is your MRI?

Nigel Fairservice

Back from the doctor today. I'm on chest infection number 4 for the year.

adam88

Nigel Fairservice wrote: »

Back from the doctor today. I'm on chest infection number 4 for the year.

Are you on Gilenya???? I’ve noticed I’m picking up a lot smaller stuff as of late

Nigel Fairservice

adam88 wrote: »

Are you on Gilenya???? I’ve noticed I’m picking up a lot smaller stuff as of late

I'm on Tecfidera. I've definitely picked up a lot of sniffles since I've been on ms medication. I suppose it's repressed immune systems. I have spent a lot of money this year on doctor's visits and prescriptions.

adam88

Nigel Fairservice wrote: »

I'm on Tecfidera. I've definitely picked up a lot of sniffles since I've been on ms medication. I suppose it's repressed immune systems. I havd spent a lot of money this year on doctor's visits and prescriptions.

I’ve had defo 4 times the amount of things I’d usually have. I refuse to take antibiotics unless they’re give through a vein. Your body needs to fight as much as it can

Anybody have issues with balance partically when eyes are closed? Thanks

Carrie6OD

Sunnyspot wrote: »

Anybody have issues with balance partically when eyes are closed? Thanks

Always! Eyes open or closed!

Thanks but specifically when closed only?

MyAccount

@ Sunnyspot

I Have had ongoing issues for about three years. (My MS symptoms first appeared about 5 years ago). Definitely worse with eyes closed but am told by (medical) people, who should know what they are talking about, that it is common even normal amongst the general population, that our balance is worse when we close our eyes, so the basis the eyes closed bit doesn't concern me unduly.

About two and half years back I had lots of issues with balance including some pretty severe episodes of vertigo (which was very debilitating at the time and caused some pretty nasty falls and yucky nausea).

I am lucky to have a top drawer GP who referred me on to a Vestibular Specialist. I also regularly work with a Neuro Physiotherapist so between them while not quite as good as in the old days, it is much less problematic, except when I get tired / overdo it. (These referrals were private and not inexpensive, and can't comment on what might available in the public system, or otherwise, so depending on your situation, these may not be an option but definitely benefited me massively).

We are different, and what works for one may be completely inappropriate for others so while I recommend the above, go talk with a professional.

My best wishes; and sympathy, I know only too well that these things can be scary and debilitating.

byhookorbycrook

If I need to wash my hair in the shower and close my eyes, I need to lean against the wall to avoid falling in a heap. My "open eye" balance is somewhat compromised, but closed is cat!

sqooka

Sorry if this has already been discussed earlier, this is a long aul thread to go back through. I've been on fingolimod since 2014. The first couple of years were no bother, a total dream by comparison with copaxone. But last year and this year particularly I've just been constantly sick. I've basically been sick with a cold for 3 months so far this year (2 separate colds). The first one eventually cleared with antibiotics and I just started for this one as it suddenly got worse again yesterday. A couple of things changed at the same time as this (moved in with boyf so no more daily cycling), asthma got worse, so I'm wondering if that has anything to do with it. Has anyone else not been able to shift colds on fingolimod? Or found they caught everything going? Or found it grand for a while and then suddenly not grand? Any comments are very welcome!

Nigel Fairservice

I have had 4 chest infections this year. I'm also asthmatic. I've had a lot of upheaval this year as well. I changed jobs, moved in with gf in a new town and my mother passed away. I have been sicker (generally speaking) more this year than last but I put it down to having a repressed immune system. On Tecfidera for the MS but I think MS medications repress our immune systems.

sqooka

Nigel Fairservice wrote: »

I have had 4 chest infections this year. I'm also asthmatic. I've had a lot of upheaval this year as well. I changed jobs, moved in with gf in a new town and my mother passed away. I have been sicker (generally speaking) more this year than last but I put it down to having a repressed immune system. On Tecfidera for the MS but I think MS medications repress our immune systems.

Thanks for the reply, and I'm so sorry for your loss!
As for the tecfidera I'm a bit disappointed to hear that, I had been hoping to switch to that one as I thought it mightn't have the same effect.

byhookorbycrook

If seriously recommend Tysabri - why fool around with less effective drugs !

sqooka

Honestly I was so happy with Gilenya until this year that I was kind of hoping someone would post a reply who's been on it and found it fine, so that way I could put my rubbish health this year down to something else.

adam88

sqooka wrote: »

Honestly I was so happy with Gilenya until this year that I was kind of hoping someone would post a reply who's been on it and found it fine, so that way I could put my rubbish health this year down to something else.

Give it a few more months, I find the tablet itself grand and no side effects from the tablet itself.
Yes I have had more sniffles from my immune system being lowered but I’m willin to accept that. Also doing some of the things you did this year is stressful enough and would cause a person to be run down anyway. Give it a bit longer before you discontinue it, there’s a lot of info about people getting an increase when they stop Gilenya so discuss it well with your Dr

sqooka

Thanks Adam, I'm planning to have a chat with the docs in November when I go in before I decide anything.

cj maxx

Sunnyspot wrote: »

Anybody have issues with balance partically when eyes are closed? Thanks

Eyes closed I'd need to hold on to something. First time I noticed it was when my neuro got me to close my eyes. Have a rail in the shower exactly for that.
Reading here and fb groups there doesn't seem many on avonex, like me ?

adam88

Diagnosed 18 months. Doing well. Fatigue is my biggest complaint with a little drop in cognitive functions, mumbling my words etc. I’ve a few little balance problems but nothing major,,,,,,, just wondering is it worth while getting referred to a physio?? Wonder could it halt the progress of my MS

Also is there anyone on this that doesn’t thing about their MS at least once or twice a day ??

tinofapples

adam88 wrote: »

Diagnosed 18 months. Doing well. Fatigue is my biggest complaint with a little drop in cognitive functions, mumbling my words etc. I’ve a few little balance problems but nothing major,,,,,,, just wondering is it worth while getting referred to a physio?? Wonder could it halt the progress of my MS

Also is there anyone on this that doesn’t thing about their MS at least once or twice a day ??

Hi Adam, you could check out your local MS society if there is one nearby, they'll have a physio who will be willing to see you I'd imagine. Where are you located ? You and I seem to have been diagnosed around the same time, April 2018 for me.

adam88

tinofapples wrote: »

Hi Adam, you could check out your local MS society if there is one nearby, they'll have a physio who will be willing to see you I'd imagine. Where are you located ? You and I seem to have been diagnosed around the same time, April 2018 for me.

Kerry lad here. Diagnosed in June 18.

cj maxx

Not feeling great this morning. Temp 38.1c and can hardly walk. I've been coming down with a bug these last few days so purring it down to that.

adam88

cjmc wrote: »

Not feeling great this morning. Temp 38.1c and can hardly walk. I've been coming down with a bug these last few days so purring it down to that.

Yip. Viruses play havoc with the MS, picked up a nasty bug abroad last month, there was two days straight when I couldn’t walk by myself, my balance was so bad

byhookorbycrook

adam88 wrote: »

Kerry lad here. Diagnosed in June 18.

I get my Tysabri in Tralee. For a physio, you'd do best to find a neuro-physio, think there's one in the General. Physio won't halt MS, nothing does at present, but a good neuro-physio will help you stay as physically fit as possible.

MyAccount

I agree with byhook, I got my diagnosis in Feb 2015, but in hindsight was dealing with various "silly" challenges for a while before.

I have been working with physios on and off for 20+ years (mostly strength & conditioning, and rehab following sports related injuries), but starting working with a Neuro-Physio about a year ago, (after having to push my Neurologist quite hard for a referral) and while it would be wrong to call her a "miracle worker" the work we do, in my opinion, definitely helps.

We are all different and will each respond to different treatments or stimuli differently, (and perhaps it's denial / placebo effect on my part) but in my case I believe I have seen improvements in balance and ocular function and reactions, which have allowed me resume my fitness regime, albeit not quite with the same vigor as before. I put that down to my Physio's understanding of the complex workings of the central nervous system(s) and how we "fire" our muscles etc and the "technically difficult" work we have done as opposed the "hard" work done with a more traditional Physio where muscle strength and endurance etc tends be the focus; if that makes sense.

Either way, in my uneducated opinion, working with a Neuro Physio can't do any harm (that being said I am not a medical professional / expert so my experience is precisely that "my experience") - Either way good luck

adam88

byhookorbycrook wrote: »

I get my Tysabri in Tralee. For a physio, you'd do best to find a neuro-physio, think there's one in the General. Physio won't halt MS, nothing does at present, but a good neuro-physio will help you stay as physically fit as possible.

Yes. That’s what I’m looking for. I’ve found myself slowing down a bit lately