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Think I’m back in limbo land!!

Hi all,

ive got some new and wonderful symptoms so phoned the gp who told me to call the ms nurse.

ms nurse was very nice and said yes these are ms symptoms.

i mentioned I had not had results of my VEP test and she found a newly typed letter from the neurologist on the system and the vep came back normal and he has given me a “working diagnosis of RRMS” so am I back where i started???

he said defo RRMS a couple of months ago now I feel a step back and in doubt.

ms nurse wants to see me in January anyway.

nit sure what to think now.

louise xx

Hi Lou

I think it’s a definite diagnosis of MS. The VEP is something that’s not always done. So lots of people probably have a negative VEP. I can’t even remember what mine was. The fact is that (I think, correct me if I’m wrong) you’ve had a positive LP and MRI. They are the star turn in the land of MS diagnosis. VEP doesn’t get a mention in the. McDonald Criteria. So, the neuro is hedging his bets.

I think. So don’t bet the farm on it, but sadly (or not, depending on your alternate diagnoses) I think you have MS.

Sue

Thankyou sue, I’ve never had an LP and he’s going solely now on brain mri as I have no spinal lesions and the letter she read to me said I couldn’t have had optic neuritis a while ago so all he has are the 13 brain lesions and the strong family history of people with ms. So I’m feeling a bit like I’m a step backwards now xxx

13 brain lesions surely have to be what caused him to diagnose MS before. So negative VEP means ?? I just don’t know enough. I’m sorry Louise. I would feel pretty much like you do now. It’s definitely not that you or anyone, wants MS. It’s simply that once diagnosed you don’t expect to be flung back into the mire of Limbo without a warning.

I’m sure that once you get to your January appointment, things will be much clearer. But meanwhile, I’d stick to the MS diagnosis and ignore this ‘working’ diagnosis as pure arse covering (to be utterly frank that’s what it sounds like to me).

Sue

I agree sue, I remember my asking him “what if the vep is normal?” And he said but you have brain lesions so I am going to stick with the diagnosis and wait to see the ms nurse.

of course ms is not something I wanted but as most of my family have it and I have lots of brain lesions would be a weird coincidence if it is not.

I think the nurse would not want to see me if they were not that certain xxx