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Worn down

Feeling really quite worn down with everything at the moment. My symptoms are so random, no one seems to know what’s wrong with me… Ive only been going through the testing / elimination process since August and I know some people have to wait years for diagnosis, if that ever happens. I’m not convinced I have MS,but can’t deny that some of my symptoms match, but they also match a zillion other things too.

i’ve had MRI’s CT’s blood and nerve testing and came back fine, that’s according to my Neuros secretary- I can’t actually get to see my neuro, she just sends me for more tests without actually seeing me to talk things through. My symptoms are constantly evolving and my GP just tells me it’s all connected and I have to wait for the neuro! And ups my gabapentine

now have a lumbar puncture booked for Christmas Eve (great timing ha ha ) and have to play the waiting game again to see if I get that ever elusive appointment with my Neuro.

I have a lot of lower back and hip pain, which I’m concerned is being overlooked by the Dr’s. They just tell me 70/80%of the population suffer with back pain, and it’s the other stuff they are interested in. Personally, I wouldn’t be surprised if it’s this pain that’s causing everything else…

just feeling a bit low, having more bad days than good recently. I’m usually a Christmas junkie… But can’t even get excited about that at the moment…

sorry for the waffle and moan.

good luck with the lumbar puncture, for me the thought of it was worse than actually having it done. Take it easy and have plenty of rest over the following few days.

G

Don’t feel down or alone. There’s lots of us going through the same thing. I’ve not had a lumbar puncture (infact, haven’t had any tests done yet - very long waiting lists up here!), but I’ve had 3 epidurals which must be similar, and they weren’t that bad. Christmas Eve isn’t great timing, but at least it’s taking you a step closer to knowing what is going on.

Thanks guys. I’m not really too worried about the LP now. Like you say people seem to say the thought is much worse than the reality.

had an appointment with my orthopaedic Dr on Friday and he doesn’t think my issues and pain are his dept. Talked through my pain ie. Back, hip and knee. He did the usual checks and reviewed my MRI’s again and said its not my joints that are causing the pain and it’s over to neuro to try to find the cause.

I said my pins and needles, numbness etc in my arms, legs and face are reducing with my gabapentine, but the pain in my back, hip and knee is not being touched, by that or the cocodmol. He said the gabapentine should reach there when I get the right dose or my GP could recommend something other than cocodmol. He’s adamant that the pain isn’t Bone or joint related!

Im baffled, how it’s not bone / joint related! Just hope I get to see my Neuro soon to chat things through. And try to make some sense out of it all.

HI, I identify with what you are saying and feeling like.

I spent many years being tested for this and that.

Initially, I presented with typical PPMS like symptoms ie foot drop, falls, arm spasms, cold feet, bladder and bowel problems.

Over the years, I had 4 MRIs, 2 LPs, 2 EMGs, 1 VEP, and oodles of blood tests.

No tests proved MS, nor anything else.

I was wrongly diagnosed with PPMS, but that was turned around twice, in favour of HSP…hereditary spastic paraparesis. That is my current diagnosis and I doubt very much that it will change again. HSP is an incurable condition, with similar symptoms to MS.

I am now 63, mobility problems began when I was 45.

I saw 16 neuros in 4 different hospitals, plus 1 privately.

For some of us, it can be a long and tiresome journey to diagnosis and there are others who never get there.

Good luck to you for the future and I hope you get an answer soon.

luv Pollx

Goodness Poll, sounds like you’ve been through it. Hope you are getting the right / best treatment for you now.

Thanks for you well wishes just good to vent sometimes. Gets it out and then can get back to positive thinking.

X

Yeh!

pollxx