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More negatives.. !!

Not sure where I belong!!

My neuro basically told me he’s ruled everything else out and was left with PPMS and HSP. But all tests (MRI/LP/VEP) were negative for MS, so although he said he’s not ruling it out 100%, it’s unlikely…

He tested me for some enzyme to see if I have the hereditary part of HSP, but today he’s told me that was negative so unlikely to be HSP…

I just want to know where I belong!!

He did tell me I have Spastic Paraplegia, and we may never find the cause, along with other conditions which he can’t give me answers for… (well he’s told me I do have ME, (dx 2008) as well as Chronic migraine and ‘idiopathic’ spastic paraplegia… as well as the other things he can’t answer) But I still feel fobbed off!!

I know my story is similar to others… especially Poll… but unlike Poll’s wait of 14 years, I’ve only had 5.

Sorry I just needed to vent…

Thanks for listening

xx

Five years is a long time suffering with no answers!

Best wishes.

Mitochondrial disorder???

(A friend has recently been told that it could be one of these after almost as long as Poll without any answers, so it came to mind.)

Karen x