Diagnosed with Neurosarcoid a year ago saw a Neurosarcoid Neuro who’s questioning ms, due to lesions on mri looking more de-myelination than granulation? Lumber puncture a year ago showed white cells? Anyway for the last year been having balance problems, double vision pins and needles etc Last few weeks balance getting worse very tired, double vision worse, falling. Then on Saturday fell in the shower after my leg went numb and fell to my knees and couldn’t move off my hands and knees for pain in my lower back. Anyway been hospital since then awful spasms in legs and numness, finally just seen a neurogist, who was very flippent, and did a 2 minute check and said your reflexs are ok and mri looks ok so that’s all good isint it? I said what about the lesions and he said oh yes a few non specific? So previously last year the neurologist showed us the pictures of the mri and there was at least 10 there. He was very vague and said it looked the same as last years, but the report hadn’t been done yet. He said going to try and get me on the Neuro ward and do a few more tests but when asked he didn’t know what yet. Arrrghhh he made me feel like I’m making it up 
Just want my life back
Any ideas?
Sounds like a neuro who’s been on duty too long, hasn’t looked at the files properly, is out of his depth or is just plain bad at his job It’s not like a diagnosis of neurosarcoid is handed out like sweeties!
Hopefully the consultant in charge of the neuro ward will be a lot more switched on. What you can do until then, I’m afraid I don’t know.
I hope the wait isn’t too long and that you’re soon feeling a heck of a lot better. One thing to be sure of while you’re waiting: this is real - have faith in yourself.
Karen x
Thanks so much Karen, your right I know, just so frustrating, Hopefully the mri report will be back soon
Plot thickens just seen another neurogist, Who said amongst other things Brisk reflexs? Something in my right eye, said he wanted to do another lumber puncture, imaging and visual potentials? I said I had a lumber puncture a year ago and it showed white cells? And he said yes it did show inflamation and octinal bands? Also said to him the London Neuro was questioning wether it’s Neurosarcoid or a de-myelination condition and he said he’s questioning the same. Also the nurse just came and gave me potassium and magnisium but didn’t know why?
Hello xxx
I just posted on the lovely species that is called the Neurologist too! Mine is an arrogant, patronising little man who shouldn’t be in a so called ‘caring’ position!
So glad you are moving forward tho!! xxxxxjenxxx
Sorry to here your going through the same Jen, is there any chance of you seeing a different Neuro? Xxx
xxx well - he did a referral to the MS Specialist so at least that’s a plus! The trouble is I’ve just looked and the MS Specialist is his colleague in the office next door and they share a secretary!!
I’m not feeling confident here!!! Eww!! xxx
Ah glad you’ve got a referral to someone else, at least you won’t have to see that nob again, I’d complain to pals if I were you, the way he tested you was awful Hopefully the specialist will be more help, I 'be just googled the Neuro who came to see me today and he’s an ms specialist too so hopefully will give some answers xx
It may just be me but I find all the neurologists that I have spoken to are a little odd? They seem to be a very weird bunch! Maybe in medical school they are taught to become this way and desensitise, I noticed that they have very little empathy at all! I’ve just been discharged from hospital and I saw 3 different ones whilst there, all very flippant and unsympathetic. I hope you get some real answers soon!
Brisk (big/fast) reflexes can be normal, but if yours are normal, the neuro probably wouldn’t have mentioned them! Great that they are doing more tests. Not sure why they are repeating the LP though. Once someone has oligoclonal bands (is that what he said?), they have them for life. Perhaps they want to be sure though - it’s possible to get a false positive. Btw, a positive LP result for MS is oligoclonal bands in spinal fluid but not in the blood test taken at the same time. It’s not conclusive though and there are other conditions that can cause the same result.
Potassium and magnesium are good for spasms - perhaps you are low in them too?
Fingers crossed for some answers soon! (Glad to hear that this neuro sounds more on the ball than the last one!)
Kx