Hi All, I got an awful virus in Feb 2024 . I couldn’t get up for a week and since then I have been getting neurological symptoms. They started with spasms all over my body, legs mainly, arms, back and now under my feet are spasming. I get random spasms in my bum, thighs which are strong pumps. I am also getting numb toes this lasts a few weeks then goes and comes back again. I wake every night and usually have numb hands. I am feeling very stiff and my joints in the knees and neck click/make crunching sounds. I had an MRI which showed radiculopathies at L5/S1 (right side) and also C8 (both left and right side). My nerve conduction studies and EMG were clear but then I have been reading that they don’t diagnose MS only that a person doesn’t have other conditions like peripheral neuropathy etc. I haven’t been offered a lumber puncture. Should I ask for more testing? I have been reading the sooner you get a diagnosis the better as you can access treatment. I am so worried/distressed for my daughter who is only 10 years old also my mum who is 81 with dementia living with us. Any advice would be much appreciated. Thank you so much in advance and wishing every the very best.
Hi Clare
I have no direct advice to offer for you with your situation sadly but I do appreciate the awful position you are in.
I have only a few similar symptoms to the ones you mention along with a couple of different ones also,
Like you I am just starting out myself with all of this and it is not an easy path to navigate as it seems treatment, waiting times and quality vary greatly depending on where you live.
With that said I would just like to welcome you to the forum where I am sure you WILL be able to get some great advice and assistance as I myself have been able to.
I wish you all the very best with everything.
Regards
Dave
Thanks so much Dave. That’s very kind of you to reply. Best wishes.
I am sorry that you are having a worrying time. What do the doctors think is going on?
Hi Clare, I’m no medic and had to look up Radiculopathies. As I understand it , wouldn’t they explain your symptoms, aren’t they sort of typical of Radiculopathies?
Hi Clare
Have the Docs explained how the radiculopathies may have come about? This would be top of my list of questions - when someone is laid up with an illness, it can affect the strength of connective tissues and joint alignment and cause issues down the line.
Further investigation by Neurology along the lines of head and full spinal MRI to look for lesions, before heading down the lumbar puncture route would be indicated to rule out demyelination anywhere in the CNS.
A referral to Rheumatology might be in order - viral infections can trigger auto-immune conditions that affect joints and connective tissue/tendons etc. things like Rheumatoid Arthritis or Lupus should be ruled out.
My sister developed RA as a teenager after a particularly nasty bout of Epstein Barr Virus; she has raised 4 great kids and our Mum, who also has dementia, lives with her now. She has good days and bad days, and the kids have been more resilient than you would think possible.
Going through the whole “what the heck is going on with me?” phase is physically and mentally draining, but you need answers in order to get the right treatment. It will be tough going at times, but stick with it until you get to the bottom of whatever it is.
There are all kinds of troubles that can be triggered by a bad infection, and while MS does seem to be one of them, there are plenty of somewhat less troubling options, none of them something you want to have, but some that do get better. Keep working away at finding out what ails. It can be slow and discouraging work, but there it is. I am sorry that you are having such a worrying time.
p.s I was just looking at my EMG and four of the results say reduced. As I understand I need to just keep doing everything to keep the MS symptoms at bay and stop them progressing. I was worried as I read another post in here saying if you don’t have lesions this can be a sign of progressive MS as the lesions appear later with that condition? Not sure though. I have read so much.
Thanks so much Hank. Yes they explain them somewhat but my symptoms are progressing and I get sudden electric shocks in my stomachs, pain behind my eye, the numbness is moving to underneath my foot. I wake every morning to numb hands. I am doing nerve flossing and Phisio exercises twice a day. I am also now very stiff all over have tight muscles from the spasms. Also, my ribs at the back are constantly in pain I think from being stretched by the spasms. The radiculopathy diagnosis just doesn’t seem to explain all my symptoms. I am doing everything to keep calm and relax etc Amy advice? Many thanks in advice. Best wishes.
The Dr say I just need to wait and see. The neurologist discharged me. I checked my nerve conduction tests and four of the results say reduced?
Ok, but must admit I’m a bit confused. Didn’t the neurologist say any thing at all about what the diagnosis and prognosis is? And the Dr said wait and see? For what, did he not give any indication of what is causing your various problems?
To be honest, your symptoms dont sound like anything I’ve experienced from MS ( I get the the joint clicks and problems but in my case that’s older age and maybe some arthritis)