Hello to all. I hope you are all as well as can be.
I've just been diagnosed with Clinically Isolated Syndrome. Had all the scans and tests back in January, when I was admitted to hospital. I also have L'hermittes syndrome. Dr reckons it will be diagnosed as MS, as i have transverse nyelitis and brain lesions. Sorry if my spelling is off.
This feeling of pins and needles in both legs and one hand is just hacking me off, as it seems to take so much effort and energy, just to try and get on with life. Very tiring at times.
Just thought I would come on here and read up as much as possible. See if there is anything I can do, to help overcome this.
Still trying to look on the bright side of life, but still very frightened at the mo, a feeling that has only hit me in the last couple of weeks. Think I believed it would have passed by now.
Promise not to come on here and whinge, but I know from experience that support from people who understand, can be a very useful aid.
Thanks one and all. Take care
Does anyone have ms treatment but as no lesions, if so how long as my PCT will no longer allow treatment to ms patients unless lesions are found the reason for this is they don't won't to be sued in case it is not ms but something else makes sense if they find that something else and not leave 12 yrs in my case.
hazeyxx
Morning all, hope you are keeping well in the bad weather. We have snow, then ice then more snow on top. Great for unsteady peeps like me!
Just wanted to drop a quick note to say I took all your advice and eventually took the plunge to go back to the GP. I saw the neuro in early November, and since then have had MRI (he said this was unremarkable) and an LP which was negative. However, my symptoms are getting worse, apart from a respite from fatigue which has been much better. And I've had new symptoms too. The neuro sent a letter saying everything was clear and he hadn't arranged a follow up.
I went back to see GP on Wednesday, and she read through the notes and said she couldn't understand the fact that no follow up has been made. My notes from neuro apparently say he saw signs of demylenation in the neuro exam (GP said this was posh way of saying its MS!), but this wasn't mentioned on letters to me
GP went through what symptoms I'm having now and what had happened to date and since neuro appt and both she and trainee GP agreed they think its RRMS! She said it's affecting my day to day life and limiting what I can do, therefore it needs reviewing further and a definite diagnosis being made. She also said it's completely unfair for the neuro to tell me he thinks I have MS and then do only 2 tests and decide there is nothing else to do. As the GP put it MS is complex and they need to build up a picture of symptoms etc, and there are other tests they can do to confirm diagnosis. She is going to write to the neuro with update and ask for further appointment and poss VEP and whatever else they can think of!!
So glad I went back - I was beginning to think I was losing the plot but GP says neuro saw evidence too, so hopefully will maybe get some answers soon. And at least if they decide it's not MS after all they might agree on what is causing it and give me some treatment.
Will keep you posted, but thanks again for giving me the courage to go back and keep fighting for answers
i was just wondering if it is possible for ms to affect muscles in polar ways? what i mean is, sometimes the muscles in the right hand side of my body are too weak to function. and other times they are totally seized up, and i cannot straighten my leg or uncurl my fingers.
many thanks
bb x
Hi everyone. Not even sure whether I should be posting on your forum but I am slowly getting at my wits end and I suppose like lots of people I am just looking for answers. Long story short(ish) for 5months now I have been 'numb' (I can feel a pinch or jab but feel like something draped over my skin permanently) from my little pinkie toe on my left foot up my left side and arm and down the left side of my back. This 'numbness' gets more intense in direct sunlight (not that we see a lot of that) and after a bath.
With the onset of this, on the same day, came what I described in the beginning as strange vacant episodes where I would be totally unable to interact with my surroundings but for the most of the time I was aware of what was happening. These would be daily, sometimes several times a day. This has since been diagnosed as Epilepsy for which I have been prescribed medication (and lost my driving license).
All this was checked out at A&E but was sent home having been told I had probably had a viral infection at some time and all would be well in a few days or so.
I had a brain MRI quite quickly on referral which came back clear. I have since had a MRI of the cervical and thoracic spine (neck and top of spine I think). The result of that came today: No significant abnormality. Whatever that means.
The only other things that have happened lately are an intense acute pain in my left eye, but no vision problems. This normally happens every 2-3 weeks and lasts for a few days at a time and I have had this several times in recent years. Then about 2months ago I went for an eye test at the opticians and when looking at a sheet of graph paper a proportion of it was all wavy with my right eye.
I have no history of epilepsy or any major illnesses in my family but what i find really strange is the neuro told me categorically that the seizures and numbness are totally unrelated even though they came on the same day!
Obviously I am not looking for any miracle diagnoses but I think I am just looking for some simple advice and perhaps hopefully someone who may have perhaps experienced just the smallest thing similar to the strangest 5months of my life.
Many Thanks for listening!
Best Regards
Mark
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