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!
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
Just had a visit from my nurse as I've been getting the ms hug on and off, horrendous nerve pain absolutely everywhere. Also blurry vision, twitching and jerking , weak/stiff legs, and more sensory abnormalities than I can type!
This started in December, was given steroids but as things got a bit better I refrained from taking them as they are super strong drugs, that last time I took made me feel awful, so I thought if I could go without I should.
Her advice today was just to take them and see if it makes a difference. Somedays I'm fine, others I'm bed ridden, which is not good when I have two kids to look after!
So what I'm asking is should I just take them in the hope it will cut short all this activity. Or just carry on and hope it settles down? It doesn't feel like any relapse I've had previously and I just worry that as it's so long since it all started it won't help and I'll end up feeling worse.
Any thoughts?
Lx
Hi everybody, sorry for long absence! Birthdays and Xmas take up way too much time, LOL
I'm confused and wondered what the thoughts were on here. My neuro has been very "wait and see" with me, and told me not to worry although he said he is confident that I do have mild MS. He wont offer treatment yet and has advised to stay away from stress, stay fit and healthy, and hopefully things will just stay as they are. He told me I didn't need to notify DVLA. I'm to go back and see him in a few months for a follow up scan.
I don't have any significant symptoms, altered sensations, tightness in fingers, dixxy spells, and stupid wet patches that aren't there! The newset symptom is tinlging in my leg and feet. The tingling gets much worse after I've been walking for more than a nimute. So annoying but absolutely no big deal at all but is more significant over the last few months. These irritating symptoms vary from day to day and some days most of my leg can feel wet when its totally dry. I also get very tired which makes me feel sooo heavy (I'm not overweight). I also struggle to get the right words out, and muddle my words or just use the plain wrong word completely.
So I feel a bit in limbo. Where do I stand? I know I have MS but I've been offered no treatment, no nurse, no advice other than take it easy and don't worry about it. Do I just ignore these unusual changing symptoms even though they are worsening although causing me no disability issues what so ever??? I'm so confused! If anybody has any advice or opinion it would be much appreciated.
Thanks. and Happy New Year!!
saw new neuro last week,he has put meon steroids for a relapse he thinks iam having.my confusion is he said secondary progression ms with relapses.i didn't think secondary progression ms had relapses,i thought relapses only happened if you had relapsing,remitting ms.iam really confused !!!! any help with my confusion would be greatly appreciated. thanks guys in advance take care x
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.