possible MS
chandy2809
Posts: 42 Member
Hi I have had 6 hospital addmitions over the past two years with what they thought was orbital myosyits. I have been on and off steroids and am now being seen by moorefeilds in london. However they now think its optical neurits. I have a tingling in my foot and numbness in leg, tired all the time and have weakend arm and numbness. My GP and one consultant said its possibly MS, on consultant has said either MS or a trapped nerve in my elbow....that explains the arm but not the other symtpoms. I have to go into hopsital in london for tests - MRIs/Lumbar punctures. I have had a disc removed too!
Im 25 and the not knowing is driving me slowly round the bend. if its a trapped nerve then great, its not MS, but if it is MS it will be lovely to have a diagnosis after so long.
I have gained weight becuse of the steroids and since Oct i have been on Azathiaprin, which can make you lose your appettite....great i thouhgt...no such luck :-( i havent gained weight but not lost either :-(
Just after some guidance and support - that it will get better! lol feeling a bit low at the moment and seem like people dont understand what im going though when i feel like my leg isnt there or cant move my fingers properly. I have the constant fear that my eye will play up again and il end up back in hosp on steroids. just Fed up now.
Im 25 and the not knowing is driving me slowly round the bend. if its a trapped nerve then great, its not MS, but if it is MS it will be lovely to have a diagnosis after so long.
I have gained weight becuse of the steroids and since Oct i have been on Azathiaprin, which can make you lose your appettite....great i thouhgt...no such luck :-( i havent gained weight but not lost either :-(
Just after some guidance and support - that it will get better! lol feeling a bit low at the moment and seem like people dont understand what im going though when i feel like my leg isnt there or cant move my fingers properly. I have the constant fear that my eye will play up again and il end up back in hosp on steroids. just Fed up now.
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Replies
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Good luck with diagnosis. It took me six months to get diagnosed and it is SO frustrating during that stage. As weird as it sounds I was relieved when I found out because at that point I could move forward and deal with it instead of not knowing. Hopefully the MRI will point doctors in the right direction.0
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It does get better, but it takes time. Not knowing would definitely be really hard. I tried to remind myself often that I'm still the same person before and after diagnosis. Nothing's changed except for a name for something that's wrong. That helped to keep it in perspective much of the time.0
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thanks, im going to st thomas' in london on monday for three days of tests....just think, this time next week i MAY have answers!!!! it been a long two and half years!!!0
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Take care, I'm rooting for you! I just got diagnosed myself in March. It took all of 2 hours to diagnose me - MRI and done. So I don't have any of the prolonged medical experience that you do, but do know that it's tough at first, but it does get better. And there are good medicines out there to treat with. I just hope the next round of tests goes as smoothly as possible.0
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Take care, I'm rooting for you! I just got diagnosed myself in March. It took all of 2 hours to diagnose me - MRI and done. So I don't have any of the prolonged medical experience that you do, but do know that it's tough at first, but it does get better. And there are good medicines out there to treat with. I just hope the next round of tests goes as smoothly as possible.
Thanks - im very nervous and hoping that these symptoms are a trapped nerve - which it could be, but then that doesnt explain my eye problems! half of me is obv hoping it isnt MS the other half is hoping it is and that they can finally tie everything together! weird situation to be in. having MRI on tuesday, possible CT and Lumbar puncture and nerve conduction test as well as general looking at my eye and my arm and leg - think its going to be a draining few days and hard because im having to stay up and away from my BF as we live about 2 hours away! at least il have my mum there! 25 and still needing my mummy hehe!0 -
Good luck with your tests - impossible I know - try not to stress about it! Once you have a diagnosis you should feel a bit of relief if only because you can move forward. And having your Mom there is probably a good thing - Mom's are very calming. When I called my Mom to tell her I'd been diagnosed I wasn't sure what to expect or how much I'd have to explain (she's 81). She asked me if I had relapsing or progressive and when I said relapsing she said "Oh you'll be fine - at least you will have some breaks from it. Just make sure you keep positive and exercise". Apparently she has 3 or 4 friends with MS. Who knew?
Just remember that the disease is treatable and the more positive you are the better you will adapt to any changes that happen.
I have optic neuritis and it's gotten much better in the 4 years since I've been on DMT.
Take care of yourself.
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Hi All - Tests went well.
I dont have MS and the swelling of my eye is the soft tissue rather than nerve or muscle. My foot is down to slipped disc i had removed and arm they think is a trapped nerve!
After 3 years almost - im happy to FINALLy have answers! thanks for support!
Char xx0 -
I am so happy to hear that it's not MS and that you finally have an answer. Hopefully both are treatable now that you know the cause!0
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I am so happy to hear that it's not MS and that you finally have an answer. Hopefully both are treatable now that you know the cause!
Thanks - the eye they treat the same as they have been, so still on Azathiaprin, and the arm i have to have a test to find where the trapped nerve is. All in all some very good news!!
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