Fibromyalgia Action UK
38,765 members51,025 posts

well i just dont know

well ive been to hospital they say i dont have ms which is a good thing they still doing a mri scan just in case but they think its just my fibro getting worse so they are sending me back to the people who diagnosed me and signed me off great stuff so now i dont know what to do my legs still keep playing me up im still wobbley and still in pain its my daughters birthday soon and we are taking her to a farm place but i dont know how im going to walk round it what can i do

6 Replies

HI sarah,

That is good news that you dont have MS, i too thought i had MS in novemeber but mri said it was clear.

I was so confused as i walked really wobbly and my tremors were so extreme that i couldnt do anything.

It took me 6 weeks to be able to walk better, but my legs are definatly not the same as they were before that flare.

I was like you, about being signed off as i just thought omg i need these legs sorted.

I went to an immunologist to see if i had ME aswell as fibro and he has found what was wrong with my legs, its hypermobility syndrome and it explains a heck of a lot. Do you have pain in your knees?

My family said when it was bad, i looked like i was walking on a spring board.

My ankles hurt all the time too.

I hope you can enjoy your daughters birthday, rest as much as you can until then hun.

hugs, kel xxxx


kel what is hypermobility does it get better how would i find out if it was that


Hi sarah,

Its something you are born with but some people go un noticed.

If you look it up it will tell you how they tell if you are hypermobile, this is only a thought though as your legs sound like mine and i was beside myself when i didnt know what was causing it.

I am affected more in my legs and my right foot flops down when i stretch my leg out off the sofa and when i am lying down, if a doctor presses on my knee he can lift my feet a good few inches off the bed (which someone who hasnt got hypermobility cannot do). Some people have it in their hands and fingers too and can bend their fingers back etc... Can you touch your toes whilst standing up? I can do that even with all the pain its really weird.

It was a immunologist who told me about it but have a look on a hypermobility website and them ask your gp about it hun.

I am going to a physio as you have to be so careful with exercise withit.

If you need to you can inbox me hun.

hugs, kel xxxx


Hi Sarah, good news about the MS but still frustrating that you havn't got the answers you are looking for. I'm sure you will get sorted out very soon. In the meantime look after yourself. Love Angela xx


hi that is why it took me over year to see my gp i thought i had ms and was scared to go as my good friend died 10 years ago of that she was 37 and she started how mine did with tingling in her legs but i too was cleared of that so i now how you feel . it is good news but you are still in limbo so hope that you get there love to you diddle x


Hi Sarah, good news about the MS but I hope they have done all the tests for you. They can only say you don't have MS if they have done and evoked potentional eye tests, lumbar puncture and MRI....and the MRI doesn't necessarily show anything at all. My husband was very recently diagnosed with MS (which would be funny if not so serious) but I wasn't happy with his consultant saying he was fine after having a clear MRI showing no lesions........6 months later it did show lesions after a further consultant did the appropriate tests. The consultant involved is under investigations at the minute as I have complained bitterly. He was heard to tell a colleague that it was all in my husbands head....well funny he should say that..NOT. Apparently a lot of MS sufferers get clear MRI's initially so just be aware if you are still unwell and think it may be something else.

Hope everything works out for you and unfortunately we have to shout very loudly to get a good service most of the time now which is disgusting.

Take care. Gaynor.xx


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