so what now??

So i have had all sorts of symptoms for the past 7 months.

the usual tingly hands legs arms feet face and neck. I have had all sorts of tests! and everything has come back all clear literally EVERYTHING!

so what’s causing it? i’m not making these things up and they haven’t got any better and I have had three periods now each lasting from a few days to a month where I have been much worse. not able to dress, feels like i am walking on gravel. or use my hands etc. My neurologist is keen to take me off his books but Orthopeadics cant find anything it could be either.

As you can see i’m in a bit of a catch 22. However i saw a student GP not my usual doctor who said that it maybe that it’s so early in a progressive disease that it isn’t being picked up. Is this possible as i was under the impression that an MRI was fairly definate in it’s answers. Should i accept that it’s maybe just something that will eventually go away or should I insist i stay on the neurologists books until something is found??

i’m seriously at my wits end. Thanks in advance x

Allo anon. Yeh, stick with the neuro and keep having any tests that are offered.

It is possible that lesions dont show on MRIs. I`ve had 4 and only 2 showed a tiny bit of summat, that cant be named.

I`ve had 2 LPs and 2 EMGs, a VEP and oodles of blood tests.

All this has gone on for 14 years and there were years when i was told it was very probably PPMS.

But this October, i was finally told it defo is not MS.

The label ive been given is spastic paraparesis…cause unknown`. There is a possibility that it could turn out to be genetic. But I just dont have the energy or mental capacity to go for testing and there is no-one in the family showing similar signs.

I`ve seen 14 neuros and am still on their books for an annual MOT. I do want this, if only for the DWP records!

By the way, if you feel you need to apply for DLA or ESA or the help of an OT, to see if anything can be done in your home, to make it easier/safer for you, then do ask. I have been having all this since 2000…ie I did not need a diagnosis to access help.

I know how you are feeling and it is the pits, but i say keep going to see the neuro. if he discharges you, then get your GP to refer you to someone else.

good luck.

luv Pollx