I have been coming and looking on here for a number of years now and have still in limbo after 8 years.
I am under the national hospital for epilepsy and have been there for 20 years, I had brain surgery in 1996 and was fine for about 6 years and then started to experience mild seizures. I thought nothing of it until 3 years further when I started to get hug feeling in ribcage, stabbing pain ankles, limping for few seconds then I would be walking fine.
This was until about 9 years ago when my blood results showed up megaloblastic anaemia caused by b12 but follow up blood showed normal so wasnt treated. I could also feel cavity area where I had surgery felt like swelling but as I wasnt showing any other symptoms I made myself ignore it as I had been through so much already. I eventualy left my job and it was about 5 months later after a course of steroids for asthma that I felt what I thought was swelling shrink and all my other symptoms followed. I also had the ebv and was diagnosed by my gp first with M.E until I had difficulty walking and got a referral letter to my neurologist. The first MRI followed showing lesion on hippocampus I was told it not neurological and this was there before I disagreed with my neuro and said I felt the swelling and shrinking but he still didnt agree with me until next appoint where he said he had looked through my notes and does beleive it neurological. My reflexes showed brisk on one side at the time. After about another year I was sent for a 2nd scan that showed no other lesions these were both head and neck, this was done after I had hyper reflexes elbows and knees on both sides and clonus in feet. I waited for another year for next appointment and my neuro said he had no idea what was wrong, so I asked about my b12 as I had just had another test by my gp that showed low levels and follow up showed normal to which my neuro said that interesting. I was then sent for emg nerve conduction and ssep all showed normal but was told just because it normal doesnt mean it is at my next appointment with a proffessor who my consultant had reffered my case to but no one will give me any answers as to what is wrong.
I have asked if it epilepsy related to which proff has said no, and my previous consultant said about my b12 that something has to be causing it. I had my active b12 levels also tested which showed borderline and was advised to treat, this test was done private. I have been taking a b12 supplement last 2 years and noticed improvement. I used to wake up with tingling in hands and brainstem every day and this has improved and had feelings like barbed wire in my arms and extremely sensitive to touch I was prescibed lyrica but they wanted to keep increasing dose so instead I got a high dose b12 and this has done a better job. I still have really bad days around my period where I am completely exhausted and can feel the nerves tingling all over but mainly hands. I also have days were I wake up and it feels like my nerves are just waking up and it takes me an hour to feel normal.
My gp has given up on me infact there are 4 in my surgery and when I was in a local hospital last year in a stroke unit as they thought I had had a stroke due to slurred speech weakness down one side (same side as previous surgery) the dr there told me he had spoke to my drs and they have basicaly given up on you. I had a 3rd mri ct scan and ecg done there and they reffered me back to the national hospital. Anyone here under them, i thought it just me but they dont want to tell me nothing and I dont know if I should ask . I have had tests done for more unusual zoonotic illneses as I used to be a vet nurse and worked in the pet trade at time I became ill.