Demyelination but still no diagnosis

My MS limbo started in February when I was aditted to hospital, the right side of my body was compleatly numb, heavy and I was very weak and had a constant severe headache and foggy ,‘out of it’ feeling.

At first they thought it was an infection causing brain swelling linked to my have chicken pox a few months previous.

I was given and MRI and discharged. 8 weeks later (numbess was now wearing off) I had my neurologists appointment (in May)
He said that my scan showed several spots of demyelination causing my symptoms. I was sent for a VEP eye test (which I had in June) and then back to the neurologist in July. The vep was normal. Now heres the confusing bit… he said that my MRI scans are still waiting to be reviewed and I would then be referred to the neurology clinic (which he said would happen within 3 weeks) and would not be required to meet with him again.
7 Weeks later and nothing… ive had an appointment with my GP who said she’ll try and chase them up as she seemed as confused as I am!?

So I get told I have demyelination then nothing??!! No diagnosis?? no help as to what next??

Ive been back in work since May but I still dont feel compleatly recovered, im taking painkillers every day for the headaches, ive asked my boss about changing hours (as im on my feet for 10 hours shifts) but she refuses. Shes even told other staff that theirs nothing wrong with me and im a hypocondriac!!

Untill i get some kind of answers im stuck!!! :frowning:

what now???

Hi Lollypop,

I’m sorry you’re having issues. What I suggest is that you ring and speak to your previous neuro’s secretary and explain the situation. She should be able to check if you have been referred to another neuro or not and chase things up. It’s not good enough that you’ve had to wait but it easily happens if the neuro has forgotten, letters gone astray, longer waiting time than was originally anticipated, neuro on holiday… Explain to the secretary you’re sturggling at work and as you are waiting to see some other neuro and have no formal diagnosis work are being v unhelpful.

Hopefully with the GP and the other neuro secretary on the case you should be able to get to the bottom of what’s going on. Failing that if the neuro’s secretary is really really unhelpful you could contact PALS they should be able to chase what’s happened.

Good luck