Hello all, Not been on here for a bit I just have been so unwell. I have been on a long journey and finally. I have got to speak to a 2nd neurologist and he will be giving me a full spine MRI. Previous MRI scans have shown significant lesions and I have so many symptoms that have just progressed so much (especially in the last 15 months) I used to have episodes and recovered but never fully. I just gave up all hope so I will be getting a full spine MRI and a lumbar puncture. Not sure when but I hope it will be sometime this year and hopefully I will get some answers. Still in limbo and have been given over 11 different diagnosisâs (totally not adding up) and take so much medication. I hope you are keeping as well as you can and please stay safe Lina x
Hi Lin, crikeyâŚall those wrong diagnosesâŚand I thought I`d had trouble getting to a definite diagnosis!
Fingers crossed they get it right this time.
You keep safe too sweet.
Boudsx
well when did you see the Neurologist last? For that will be key to the wait time for the MRI surelly, rather than âsome time this yearâ. I was seen (after an initial MRI with a cluster of lesions) on 10th March and had my MRI this week. What are your current symptoms which are troubling you?
Click on my name, I have so many I do not have the energy to write again. I have had many MRIs over there years. I had 3 MRI last year. I have never had a full spine one.I have more than 20 lesions on my brain. Last trip to neurologist was November, I saw him 3 times last year. Lina
Hey Boudica, you take care. You know how this all goes! Letâs see the puzzle pieces come together, I have hardly no energy right now. Xx
Oh okay. I will take a look. Seems a bit of a wait for a patient open to a Neurologist but I guess different parts of the country have different waiting lists etc. I am in South West Scotland. My initial MRI was towards the end of November last year. Saw Neurologist 10th March, then the repeat scan looking for changes to the brain scan last week. Who knows! He said he would see me in 4 months or so. I dunno lol.
I had two MRIâs but it was a Lumbar Puncture that confirmed my MS diagnosis. I canât understand why youâve never had one.
Had one last May in a different hospital, the hospital I am under neurology for say they need their own and donât understand why I never had one in 2008! My gp had tried to follow up results apparently lost. Same thing happened with my original urodynamics test! I really am at the end of my tether and I canât even walk anymore, I need help with almost everything. Lina
Thatâs not too bad then. I am in South London. I am just so drained,every symptom has come ,stayed and once I learn how to manage something else happens!!! Lina
I had a lumbar puncture in the Southern General in Glasgos in 2000, as well as a scan. I also had neuropsychological testing at that time. And checked for various other diseases. The diagnosis at that time you would say was possible MS But it seems to be so long ago and those scans no longer available so they count for nowt. Also a scan in 2008 which was clear. You get so sick of it.
I had full spine MRI in February(no lesions found) and nerve conduction tests in legs showing weaknes in both as well as nerve compression in L5.consultant who did nerve tests assured me this compressed nerve was causing drop foot and could be treated.2nd consultant who was a neuro surgeon said I wasnt a candidate for surgery for nerve compression as my symptoms didnt mean that was the whole picture and eh couldnt justify back surgery from the MRI imagesâŚso total contradiction from consultant one!
Now i am having a brain scan this weekend on NHS and the neuro surgeon said if ânothing obviousâ then Referral to neurologist next.
Also requested nerve conduction tests to be repeated in 3 months but due to Covid that wont happen.So just paid ÂŁ280 to have nerve conduction of legs and arms to be redone in June to ensure I get it done three months from first test.
It may well be MS as thought seems to be âsomething neurological rather than muscular /skeletalâ and I have started to accept this may well be MS after lots of reading on here and research.
The worst problem is reduced ability to walk far as limp heavily due to foot drop in left leg.But the hand cramps are evil and dont happen daily but sometimes several times a day then go off for days.Cant help thinking about the one consultant saying he was 100per cent positive foot drop due to nerve compression of L5 level and this was fed back to neuro surgeon who said he want prepared to operate.(Not convinced that was the right decision but maybe it was due to weakness in both legs who knows!!)
Its awful as like so many others on here I am aware that symptoms are individual and varied and at 65 this would be a late onset I guess progressive type of MSâŚfrightening or what!
This is shocking to hear. 20 brain lesions and you have not yet done a lumbar puncture or spine MRI. I would say keep hounding the GP and neurologist to actually do something. Donât give up the fight. I donât know where you are based but in London it takes 2 weeks to get an MRI appointment. Neurologists wait time vary mine is every 3 months.
I really hope something is done soon and that you are keeping postive and safe in these challenging times.
Hanna