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Posted 7/19/2007 12:22 PM (GMT 0)
ok i was wondering if anyone with ms has hair falling out and traveling pain that feels like arthritis and it is in the bones?  they think my ms diagnosis may be incorrect and are testing me for other things too-- i can not get any more ms treatment till they rule out all others--- after seeing a cardio i have developed tyacocardia and extra beats too---
Posted 7/19/2007 2:42 PM (GMT 0)
Hair falling out and pain in the bones is not a typical symptom of MS. Hair falling out could be a hormonal problem, particlarly problems with the thyroid, which also can mimic neurological problems. It is a really good thing that your doctor is ruling out all other possible causes of your problems before calling it MS, particularly now with heart problems adding to the mix. I hope you get some answers soon.
Posted 7/19/2007 3:17 PM (GMT 0)
yes they are very strange symptoms my skin is soooo sensitive -- i get rashes really easy--- the heart trouble is not that serious thank goodness but it is new and the cardio asked if i had been tested for other things besides ms-- i have had soooo many lesions no one tested for anything else--- but the pain moving around is the weird thing-- and it is a soarness it is in my ribs and breasts pretty consistently but then it moves from foot to knees to ankles to elbows and neck and stuff -- jaw is super stiff-- i have definitly felt better since they took me off the copaxone and steroids and i am on no meds right now-- the severe pain has subsides to a soarness and i seem to finally be getting over this flu but also i have a sensitivity to light-- trouble thinking-- it's frightening
Posted 7/19/2007 3:20 PM (GMT 0)
forgot to mention this weird one-- i have been dropping wiehg teven if i eat like a total pig-- i was 110 slowly it was dropping but then it floored down to 92 pounds with all my clothes on
Posted 7/19/2007 4:14 PM (GMT 0)
Definitely you need to be checked for hormonal problems -- many of your symptoms sound like they could be related to that. And then things like rheumatoid arthritis, and lupus, both autoimmune disorders. Keep us posted as to what happens!
Posted 7/19/2007 4:30 PM (GMT 0)
didn't know about hormonal stuff-- so that is a new one-- right away the heart doctor, my pcp and the neuro requested tests for lyme so i had a couple of those but then my nuero mention als and lupus but said highly unlikley-- he didi mention posible ms plus fibro mylasia-- and my pcp asked about deficiencies-- it is a tad scary-- my uncle had lupus but shot himself -- i don't like to look up symptoms of things cause then i tend to mentally get them -- silly mind-- but after they said lyme i didi check that out-- fits but i bet so does lots of things so we just need to figure it out-- they do find it strange that the ms meds didn't help and i felt horrible after steroids-- i am a but scared but i will handle whatever it is-- and if it is just ms with some other stuff while i already handled that once as a diagnosis right???  i had a lumbar puncture on tues didn't get a headache just feels like i have a giant bruise on my spine but i am extra tired more than usual since i had it-- still at work --oddly around 7pm i get more energetic-- and the vertigo stuff and weakness gets better after work-- all of these are so mysterious to me--

Posted 7/19/2007 5:45 PM (GMT 0)
Have you been Lyme disease tested?
Posted 7/19/2007 5:58 PM (GMT 0)
i was tested on tues for lyme-- i had a spinal tap, and blood drawn for elisa test and i think the western blot-- my doc said if those come back negative he is not ruling it out yest though-- i don't know what the heck is going on -- i just want to be well--
Posted 7/20/2007 2:56 AM (GMT 0)
 

Well, let me tell you i was misdiagnosed three months ago: the neuro said it was MS, and finally, another neuroinmonologist tested me for Lyme and i came back possitive! I don't live in the US (i'm in Mexico City), but i've read (and a lot) in the Lyme forum, that lots of people tested for Lyme in the US, came back negative in the Elisa test. And they recomend to send your blood tests to a Lab called Igenex (i believe it is in California), that is the best to diagnose Lyme... Search a person in the Lyme forum nicknamed "ticker" or "deejavu": i'm sure they can really help you! 

I understand how scared you are, bur i think you have to ask for a FULL diagnose, before tanking decisions...

Wish you good luck!

Y.-

 

Posted 7/20/2007 11:34 AM (GMT 0)
yuris-- thanks for your input-- my doc said if those tests come back negative we are reding them at the lab in cali and he wants me to see a specialist maybe-- i am just hoping they can get it figured out-- it's not like i want one or the other-- now they are thinking of lupus nad als too-- those would be big bummers-- my uncle had lupus when he got real bad he took his own life-- tragic-- but they also say maybe ms with fybromylasia-- what were your symptoms like??? Pain??? Dizziness??  I have pain in my bones and muscles it feels like and it moves all over pretty constant in ribs --

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