I’m still waiting on diagnosis

Anyone been waiting 3+ years for a definitive diagnosis. I’m so stressed being in limbo land. I’ve 20 legions on my brain but spinal clear for o bands. Lots of numbness and tingling mostly left sided from face to legs. My neurologist has said it could be ADEM he won’t rule out MS this waiting is terrible. I’ve now been out of my work for 3 months. I hope someone out there can me I’ll let me know their journey. Thanks

hi loopey

my gp was my saviour, a wonderful man who sadly left us to go onto bigger and better things.

what does your gp say?

i understand, as i’m sure you do too, that the neuros have a procedure to follow.

however the impact it is having on your quality of life is immense.

maybe your gp could write to the neuro about this.

carole x

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I looked up ADEM. It sounds like that is one of the things a reliable neurologist would want ruled out before diagnosing MS as the symptoms are so similar. And as you have no O bands in your CSF it might make him/her more inclined to hedge their bets. It may be that if you get past the symptoms, ie they get better, then perhaps in retrospect the neurologist can diagnose ADEM. And if it doesn’t improve, then it’s MS.

But do your symptoms come and go in a relapsing remitting type pattern? Or are they always there? If it follows more of an RR pattern, then RRMS would be more likely. But if you never improve, then either PPMS or ADEM is more likely.

If it’s ADEM or RRMS, then methylprednisolone steroids might be helpful. Have you ever been prescribed them?

I suggest you start keeping a diary, or at least a timeline. See how far you can go back with recording your symptoms, note what the symptoms are/were and whether they improved over time or just stayed the same or indeed, got worse. Then try talking it through with your neurologist.

You could try seeing your GP to get some help in dealing with the neurologist. Try to get some kind of diagnosis. If you do in fact have RRMS, you could be taking a disease modifying drug to help ward off relapses. And if it’s ADEM, they might be treatment that can help you to recover.

You have my sympathy. 3 years living in limbo is miserable.


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Hi Sue

This would be my third relapse seems to be a bit of a pattern thou last year i got some steroids and antivirals and doubled up my meds and i worked through it. Im off work at the moment. I was given Aciclovir 800mg tablets 5 a day and Prednisolone steroids 8 a day. In my last episode this worked it has not this time sadly. I go for a walk most days to try and keep on top of this but it can be a bit difficult and embarrassing as i do the odd drunk stagger lol. My GP has been supportive and feels it is MS as he has been with me in this from the beginning. Sadly neurologists see you for 10 mins and don’t really know your day to day living and when explained they don’t really want to know. Sue thanks so much for taking the time to write to me it very much appreciated


Hi Carole

My GP has been so good. He does feel i have a tricky case of MS. I have had problems with the neurologist as i felt very much dismissed on my last visit. He didnt want to know about my day to day living. Im 48 and untill the last 3 years ive been really lucky as i was never sick. I feel like a total hypocondriact lol lol. My GP has written to my Neuro again and i await his reply. The amount of meds i take are crazy but what can I do when he keeps saying he cant rule out MS. I have started to have jerks and tremors in this past month. Its scary and im missing my work so much. Thanks so much Carole for listening.