Hi all,
I posted a while back in 2014 when I was diagnosed with RRMS and everyone was very helpful. The support really helped me through. I am 'going through the system now' - I have an MS nurse and a new neurologist, but I guess like many of you my first port of call is the GP.
I had my first demyelinating episode in 2010 when I had optic neuritis, cue a week in hospital for blood tests, x-rays, VER, lumbar puncture and MRI. I had 3 days i/v steroids and my vision came back pretty well but I have had a central blurred field with a broken black outline ever since. 6 months later my hands became weak, and I could not grip. They improved, but still tire easily, and they get tight and clumsy. I have also had issues with balance, with my bladder, and with progressive fatigue. The fatigue used to be episodic, now it's pretty much constant. I used to work 60-70hrs a week and be 'on-call' 1 in 3 nights and weekends. Now I work 33hrs over 3 days, one night a week and one weekend in 6 'on-call' but it takes me all my time off to recover.
In 2014, at my request, and mainly due to the fatigue I asked for another MRI which showed new lesions and that's when I got my definitive diagnosis.
In Feb/ March of this year my left leg decided to play up. It started with intense, stabbing pain around my ankle, then pins and needles which faded over a week but left me numb over my foot, I could not feel a needle prick (to the point of drawing blood) or hot or cold. I went to my GP who noticed that my foot was weak, but he did not elaborate or say what I should do. I spoke to my MS nurse, who arranged a follow up with the neurologist for me. I have that to look forward to the week after next. But, like my eye and hands, my foot has not returned to normal. Most of the strength has come back, but it is tight, the sensation is not as sensitive as my 'good' foot and i still have pins and needles spreading up the leg. If I touch certain places I get a prickling sensation.
Whenever I ask a medic what is going on they tell me I have recovered within the limits of their tests.....but I know none of these things feel right! I've written all this down and sent it to my neurologist in advance of my appointment, but I am cynical enough to know it is unlikely to get me the answers I am looking for! So my question to those with direct experience is, is it 'normal' to be left with mild after effects, which I imagine as a type of scarring, after a flare up of RRMS? My MS nurse has suggested it may be related to the fatigue, and certainly that can make it worse, but the niggles never completely go away? It's frustrating because I feel like they do not believe me, and as well as wanting to understand what is happening to my body it is a physical problem. Ok, maybe not my foot, that's just annoying, but my hands and eyes have a very real impact on my work.
Which is another question if you can bear with me! On the subject of work, I hate to admit it but I am not sure how much longer I can continue with on-call overnight. While sleep does not cure my fatigue, it is hard to function at all without it! But I have no idea if or how I could broach this with my employers. We have other people who do the same job as me, and do not do on-call on medical grounds, but this was their position from the start where's mine has / is changing. Not an easy conversation to have when most of my colleagues fail to understand my condition, let alone 'them in charge!'
Thank you all x
Hello Everyone,
Following all the helpful advice I was given last time regarding starting DMD's...I decided to start taking Rebif.
So...I am on the gradual build up and not even at full dose yet (I have taken It for almost a month) and I feel awful!!!!
I have constant severe pins & needles, weakness in my legs, neck pain, arm pain, twitching, fatigue and most scary of all some super extreme 'attacks' that last around 3 minutes where I have an incredibly painful muscle contraction in one leg and intense pins & needles in the other...what on earth is that?!?!?!
Needless to say I feel very sad and emotional and would like to know if this is a reaction to the Rebif other people have experienced and more importantly if it is likely to go away?
Has anyone else had this experience? This is by far the worst I have felt.
I am unable to get in to speak to my MS nurse in person for a week and i find it hard to express myself over the phone.
Thanks so much in advance
Emma
Hi everyone...
Firstly, thanks to all who read/posted on my first topic, very much appreciated.
Anyway, just before xmas i had my 1st real diagnosed relapse. Twas not a pleasant experience, but, i was given a massive course of steroids for five days and told i would be fine. Somewhere around mid Jan i seemed to be doing better, however i have slowly deteriorated again, in my opinion, (and my wife's, who has been telling me for last week or more i was heading for another relapse :( Mega scary.... ).
Do any of you have pain and discomfort walking on a daily basis? My legs almost gave out onme while in tesco with my daughter earlier, it was a shock for me and i am now unsure of what to do now?
When do you decide to use a wheelchair? I mean i can walk, (slowly stumble i think is a more accurate description), but, only a very short distance totally wipes me out? I end up puffing and huffing like iv run a race. I have been getting my words all jumbled up again and my speech is affected again, (my mum told meon fone earlier).
I have just finished a course of antibiotics so it not an infection. I have pushed myself a little bit but i am used to being a hundred mile an hour person.... (well, i used to be....). I actually rang my ms nurse and asked her advice. Should i use a wheelchair, walking sticks, etc and explained i dont know if or when i need them? When should i decide to use them, etc. She said they will assess me when i go in for my next hosp appt at end of feb. But, after what happened today? It's laughably, as i was stumbling through the shop trying to keep up with my 8 yr old daughter i was thinking, "i can see why sticks would be of use to me now". Doh! Too late... two minutes later i said to the lady in tesco, "i need to sit down", and just plonked myself down next to her counter. If i hadnt sat on that counter id have hit the floor.That was a first for me... I asked my daughter if i had embarassed her and she said no, so that was ok, but i almost cried, sat there with all these people fussing me. I felt.... I dont know how i felt but i wanted to cry... Im finding it a bit wierd lately, i thought i would be fine, but i seem to be back where i was just before my relapse?.
So, sorry for rambling on, but, is this life now? I mean i try to do something, anything, and after only a small ammount of effort im totally wiped out. My legs are uncomfortable and unsteady to walk on, i get all jumbled up in my head if put under any sort of pressure, (you should hear meon the phone with anyone official... Phew... its odd). I often feel slightly giddy and unsteady? Sometimes, even just turning my head to look at someone talking is odd because i turn to look at them and it feels like my brain slowly catches up in slow-mo, its odd.... I just feel like im falling apart? My ms nurse said because im coming out of a relapse and that i had a quote "major infection", (suspected urinry infection), that i should just give myself time to recover and all would be well. I must say i have major doubts.
Please tell me what "normal" life feels like with ms cos im dumbfounded.....
Hi,
Just a quick question: I'm used to the jerking, twitching, dropping things kind of muscle spasms, but I have I different one now, too. Toward evening my upper back followed by the whole right side of my body spasms/tightens up kind of painfully. What's weird is it seems to be self-limiting to just one side, staying just to the right of the spine, then everything over on that side. I've started to realize this may be a good deal of why I'm limping so. (This right side is the same side I've been choking on, it's already effecting my throat and it's only 1pm?)
I'm off to see my rheumy, so I'll ask him, too (along with some of the other symptoms,) but I was thinking someone here might understand what I'm describing.
Ever thankful,
ohd
Hi
I wonder if any one could help me have had a mri scan of brain and spinal cord, which is normal, had evoked potentials test, awaiting results, and having lumber puncture next week.
Do you think it is no longer MS if it hasnt shown up on those, it was a MRI weighted one, so good images.
Thanking you, just want to be better
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