Hi! Newbie here, not yet diagnosed. I’ve been having symptoms since October 2023. Started off with pins and needles in hands and feet, then progressed to constant burning and prickling. Saw neurologist in August after eight-month wait. Had nerve studies in February which came back normal, and recently had nerve studies for small fibres, again normal. Numerous bloods have ruled out B12 deficiency, pernicious anaemia, copper deciency etc. Had iron infusion in March for iron deficiency anemia due to coaliac which made no difference to symptoms. Been very strictly gluten free since August 2023. Had full spine and brain MRI in September. Have now developed what the neurologist called demyelination myochlous so am being sent for a myochlonic EEG. He hasn’t actually come out and said it could be due to MS but is thinking central nervous system. Burning/numbness/tingling now spread to calfs and thighs, get horrible toe/foot cramps, permanent tennitis, constantly knackered. Night times have become torturous as get jolts trying to get to sleep, and also wakes me up when I’m asleep! I feel like I’m falling apart! Sorry about the long post - thank you for reading if you’ve got this far. Just finding it increasingly hard to pretend to everyone that I’m perfectly fine.
Hi,
Sorry you are going through this.
Is there anything you can do to ease your symptoms, while you wait for all these tests and appointments? I wonder whether a GP might be able to help you with the sleep issues, for example. I think they often advise you to adopt good habits around sleep in the first instance (easy to find this advice the NHS website). But if that isn’t suitable or effective, there might be medications that can help, either short term or longer term.
You mention pretending to everyone that you are fine… I know it’s hard to work out who to tell, and what. But I wonder if it would help you to talk to someone you trust? After all, if a friend were in the same position, you’d perhaps not expect them to pretend. It just seems a lot of pressure for you to deal with - on top of everything else.
Thank you so much for taking the time to reply. My GP has prescribed amitriptyline for the pain, which has taken the edge off. It’s supposed help with sleep as well but unfortunately the myochlous jolting still wakes me up. I’m hoping after the EEG, the neurologist will be able to suggest other medication to help.
I suppose I’m waiting for answers before talking about what I’m going through. A couple of close friends know but not the full extent - don’t want to add to their problems by moaning to them!
Thank you again for your reply x