Very long story but will try to be brief. I started getting Nero symtoms July last year at first only pins and needles in my hands and feet, and the feeling like they were swollen but they were’nt. In the September I started getting vertigo type feeling which steadily got worse, so I was finding it difficult to walk without handing onto a wall etc, Then started with the face numbness on my left side and my tongue was numb and tingling. Was admitted to a Neuro ward and was given the Diagnosis of nerosarcoidosis I had been diagnosed with sarcoid in my lungs and eyes in the June. I then spent almost 3 months in hospital as I had a lung biopsy to confirm the sarcoid and had a massive infection afterwards. So fast forward a bit I’ve been treated with steroids and methotrixate. I saw I specialist neurologist a couple of weeks ago and just received a letter back from him asking my neurologist for original tests results. In the letter he says the MRI more consistent with Demyelinating desease than granulating one? My original tests last October showed from what I can remember white matter leasions t2? A junior Doctor at the time said I had the brain of an 80 year old! I had a lumber puncture too. Which as far as I can remember showed increased white cells? Since then also I have had double vision in my right eye and been told I have nystagmus Since last year I have continued to have balance problems and walk with a stick, I have periods of numbness mainly in my toes with pins and needles in both hands and feet. Also get strobing and double vision. I have also had 4 episodes of strange numbness in my body, first one was half my back and side, the other 3 central chest from breast bone to the top of my stomach. I am now waiting for the specialist neurologist to review the results and possibly do another lumber puncture, Feel like I can’t talk to anyone in the real world, for a number of reasons so feel like I’m shutting myself away, feel so vulnerable being out because of my balance have to summone up the. Confidence to do it, but tired and easier to hide. Thanks for reading, don’t know what I expect anyone to do, but good to get it written down.
Hello, and welcome 
It’s good to hear that this new neuro is being thorough - it might turn out to be nothing different, but it’s got to be best to check. I hope he doesn’t leave you dangling too long! In the meantime, this place is a great source of support - from people who really understand One thing: have you had neurophysio to help with your balance? It can make a big difference. No need to shut yourself away with the right help and aids. Karen x
I like the idea of a large glass of red.
Hello from me aswell.
Alot of people say it helps to write their innermost thoughts and feelings on here,especially as we are all strangers so there is no consequence or fear of worrying/upsetting nearest and dearest in the process.
I am afraid the road to diagnosis tends to be long so you may well continue in limboland for a while yet,but it does give you chance to get your head round the possibilities.
Hang in there and pull up a chair
Pip
Thanks Karen and Pip, Karen I saw a physio when I was in hospital but nothing since not sure how you go about getting one? Pip your so right about it bring easier to talk to strangers, I’ve been ill for so long now feel like everyone expects me to be better, and doesn’t want to except I’m not. My husband is fantastic but doesn’t like taking about anything to do with health and I think just thinks I’ll wake up one day and be better.
hello, i still dont have a firm dx and many of my symptoms and worries are similar to yours. i to have a brill hubby and although he has some understanding and is a fantastic help he is not one for talking about feelings. i do often feel the need for a dam good cry followed by a long cuddle with lots of reasurance, but he backs off, this was how he was brought up and i know he will never change. a good rant on this site often helps and answers to questions will really help. i got my gp to help with a referal for a physio, so try and speak to yours. keep your chin up and your typing finger flexable!!! lots of love lorraine x x x
Thanks Lorraine sorry to hear your going through this too, Will check with the gp for a physio referral thanks, although in the last year I feel like I’m on a one women mission to bancrupt the Nhs. Until 18 months ago I never went to the Doctor for me and only saw them Briefly in pregnancy, now feel like Im forever bothering them. Hope you get some answers soon x
Make sure and ask your GP for a referral to neurophysio or rehab physio, not regular physio.
Karen x