I am really struggling! I was diagnosed with Functional Neurological disorder in 2022 after symptoms which included pins and needles, hand tremor, sudden jerks, balance problems,
bladder problems and functional cognitive problems, including with memory and concentration. I had an MRI scan that was clear. Since then my symptoms have progressed. The bottoms of my feet feel like I have cardboard or something stuck to them and are very uncomfortable and I’m sure I don’t have the feeling I had. My legs feel heavy, really tight and uncomfortable. My bottom feels like I’m wearing a nappy (the only way I can describe it) and I now have sensations in my lower back which also feels warm/hot emanation from the middle outwards. I can’t sleep for the feelings in my feet and legs and the pins and needles which can be almost throughout the whole of my body which drive me mad. My GP has now referred me back to Neurology but when I asked her if it could be MS if the MRI was clear she said ‘No’. I’m also feeling really low. Has anyone else had a similar experience? (I already have ME and suffer from chronic fatigue, pain, sleep problems and brain fog)
Hi Have you had your B12 checked ? However you can still have it even if the blood test shows good levels of B12, really sounds like pernicious anaemia which in the long run if not treated can cause lesions in the spine Please think about joining the pernicious anaemia group on facebook it has many people describing your symptoms I have both MS and pernicious anaemia and the B12 injections have definetly helped the symptoms
Hi Trobins. No, I haven’t had a similar set of experiences. You might have to be patient and wait for the neurologist appointment as a result of which you might get an MRI and Lumbar puncture.
Waiting for appointments and diagnoses is a horrible, frustrating experience but hang on in there!
Thank you for understanding. test results seem to take forever to get back to my GP. My GP says she can’t refer me until she has had the results of my latest nerve conduction tests which I fully understand but don’t understand why these take so long to get to my GP.
Thank you for replying to my first ever post. My Vitamin B12 is within the normal range so unfortunately it is not that.
I’ve had another dreadful night when I’ve been unable to sleep for really tight feeling in legs, pins and needles throughout lower half of body mainly, and ‘stinging’, ‘prickly’ sensations in lower back which is now moving further up my back. Feels a bit like stinging nettle sting. Feeling really low as just can’t sleep for it and just feeling I can’t cope with these constant symptoms as well as others not mentioned here such as muscle jerks, twitches etc
Hi Trobins
Has your GP prescribed anything for the neuropathic pain you have? I am on a combination of Gabapentin and Amitriptyline (10 mg of the Ami - 12 hours before I have to be awake the next day). This combination keeps my pins and needles, ants crawling on my, electric shock sensations to a tolerable level that I am able to sleep through.
If not, have a word with them about the G&A combo with a view to getting your sleep back on track whilst waiting on everything else.
I was prescribed this combination before I was diagnosed with anything.