Hi all
So suddenly last month I started having strange neurological symptoms, starting with a sensitive patch on my left arm then numbness and pins and needles in my right arm and hand. I had such exhaustion that I could barely function. I also had lower back pain and electric shock sensations down my spine. I had other strange symptoms that came and went over three weeks like a pressure on my right ribcage and tinnitus. I was referred for MRI. Anyway, after 3 weeks I started to feel much better, I should add I had pins and needles and exhaustion for a month last October.
I just had a phone call from the neurologist who said he'd like to examine me but said I have optic neuritis on my MRI but can't see and other lesions, so it's not ms. Although he mentioned Evoked potential testing. I'm just feeling a bit confused now as I know optic neuritis is often a sign of ms, and not even a symptom I had noticed. Would it be impossible for me to have it on the basis of seeing nothing else? Googling it, it seems a coincidence that it is very linked to ms. The Dr sounded like he was only looking at the scans on the phone and was making his mind up about it. Has anyone else experienced this?
Of course as soon as I got off the phone I had loads of questions!
Am having real difficulty with taking the steroids. They aren't coated and start dissolving in the mouth before you can swallow them - the taste is unbelievably foul. Day 1, I eventually managed to swallow all 5 pills but vomited afterwards and felt ill for the rest of the day. Day 2, I only managed to get 1 out of 5 tablets down. I don't think I'm going to be able to finish the course.
Wimp.
Hello Everybody,
Well, the 'silly season ' is almost upon us..I have 8 grandchildren to buy for, plus the added bonus of some 6 birthdays all through December....so my Amazon driver is visiting daily, with armfuls of packages, for which I am eternally grateful.
Talking of grandchildren...I picked up the usual cold from the ankle biters a few weeks ago...cold tunred nasty, very nasty, resulting in sinusitis ( ouch ) and a deep chest infection.and very high temps...I struggled on, using Vick, flu capsules and the like....till I could cope no more....mainly because I could also barely walk, and most definitely no stairs....
Saw the GP! Who went nuts, coz I left it too long...and left his office with penicillin and a huge course of steroids, to shift the infections, and to give the MS a swift kick..
Well....the first dose of steroids found my head swimming, balance gone....and generally felt I'd been hit by a truck....next day, felt much better, by the third I was a veritable superwoman....not much sleep so spent many of the wee hours, working though my birthday and Christmas lists and ordering the lot!
Written Christmas cards....and have almost been marching round the house !
Sinus and chest infection have almost given up and cleared off......but I know, as we all do, that come Tuesday or Wednesday.....the crash and burn will arrive...albeit briefly.....but hey....Christmas and birthdays are all organised....
As the title says....the highs and the lows of steroid treatment!
Scully
x
Hello All,
I've been reading the posts here for the last week and decided that I'm in the right place for friendly advice. My history is quite long and not very clear.
It started with a long bout (6 months total blindness) of ON in my left eye 20 years ago. I was sent for MRI which was inconclusive. My neuro did the full checks and noted upward plantar reflexes and a recent history of numbness/tingling. He mentioned a LP but said that as I was otherwise healthy, to go away and forget about it, but go back if I had any more symptoms (though I didn't know what other symptoms).
A few years later I had more episodes of numbness and tingling and the odd bout of colour loss, which I ignored ostrich-like. I carried on like this until I broke my ankle in 2010 and that's when things really started going wrong. My ankle healed, but I was left with awful pain which wouldn't go away. I was on the waiting list for orthopaedics when I spoke to a diabetic friend who had neuropathic pain. It sounded exactly what I had so I asked to see a neuro instead.
Neuro saw me, examined and noted my history and sent me for MRI. Results came back and instead of MS, NMO has been queried. I was tested for the antibody which came back negative, so MS was settled on again - until I was referred to another neuro who was more into inflammatory disease.
He sent me for VEPs and another MRI. VEP shows scarring and MRI shows lesions on my spinal cord and brain but not textbook MS. So now NMO is being queried again. Blood was taken last week to test me for another antibody so I have a 4-6 week wait for the result.
In the meantime, I've been offered a LP.
Now, call me a total coward, but I really don't want to go for one. I'm just recovering from what I assume was a relapse. My left leg has been so weak that I've been unable to lift it up enough to get my leg in my jeans. It started getting weak last November and the pain clinic physio sent me back to the neuro as she felt it was MS related and couldn't do anything more for me. It was at it's worst about three weeks ago, when I was also suffering with the heat we were having. I've never had any problems with heat - I've always ground to a halt with the cold. My GP used to say I had a faulty thermostat! Now, though, the second I get warm, I'm exhausted. I feel a lot better now it's cooled down and my leg is sort of better (I can lift it now, but it still doesn't "do what I'm telling it" so to speak).
I've also had bladder problems since early teens and odd episodes of "sunburnt" feelings, numbness and tingling.
Has anyone here had a diagnosis without LP (did I mention I really, REALLY don't want one?! I also have fibromyalgia and I just don't want any more pain). And does anyone know anything about NMO? Is it a form of MS?
Sorry for the long post - I hope it doesn't put anyone off replying.
Many thanks,
Evs
Hi all
Sorry I've not been around much but I've been really awful. I only had oral steroids about 5 weeks ago and initially they worked. They got meon my feet and walking albeit terribly but over the last 3 weeks I feel shocking again, walking is worse by the day and my speech is really really slurred, worsening as the day goes on.
Is it possible to have more steroids so soon?
My consultant said that we could discuss tysabri when I see him again, his suggestion, but I'm scared that this seeming relapse so soon after the last one night go against me. I will be seeing him tomorrow, I'm very worried because I'm on holiday next week.
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