help any ideas?
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March 19, 2007 at 4:32 pm
I am undiagnosed,Have had a positive lumber puncture,mri showed lesion in the brain but,not really consistant with ms!I have retinal vasculitis.I am experiencing burning ,tingling,stabbing pains in hands and feet,also some pains in other parts of my body.I suffer with extreme aching of any one of my limbs which may last for 5mins or may last a couple of hours.I have sharp stabbing pains in my head and face.I havent ( so far experienced any paralysis) the most would be a short spell of numbness.This has been going on for about a year now.I had EPT tests right at the begining but the burning and stabbing at that time was nothing compared to what I get now.I have heard of EMG tests but dont know whether they are the same thing as EPT’s.
Have had all kinds of bloods done but nothing found.All my doc can say is that he thinks I have some kind of demyelination process going on,but which one who knows?Has anyone got any advise or ideas for me? -
March 19, 2007 at 9:37 pm
hi chili &welcome,
ept = estrogen progestin therapy. it’s not a test that i am aware of. it has nothing to do w the emg. for a Dx of gbs you need the ncv part of the emg. go get it by a gbs experienced neuro or, as a minimum, a neuromuscular doc. make sure they run the test themselves. take care. be well.
gene gbs 8-99
in numbers there is strength -
March 19, 2007 at 11:18 pm
Chili,
Have the symptoms been continuous throughout the year? Or, maybe there were symptoms that were bad for a few weeks, possibly getting slightly better for a while, then flarring up again, and so on? Was your spinal done at the beginning, when your symptoms started? Also, have you experienced any weakness at all in your limbs, possibly even in the beginning weeks?
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March 20, 2007 at 5:33 am
symptoms have been pretty continuous with perhaps a day or two when they almost went away and then they would come right back again.The lp was done when my symptoms first started so they werent too bad then,and the result was positve.I havent really experienced weakness of limbs .Its more a dull heavy ache as if I have strained a muscle or flu like aches.
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March 20, 2007 at 9:03 am
Chilli, if i were you i would go to someone who is specialized in ms, lesions, lp, pain, eye problems, they all fall under the ms blanket. i don’t understand the ept test-why was it given? has your thyroid been checked as well? do you have problems climbing stairs without using your arms? have you been treated with ivig or pp? sorry for all the questions-just like to know more details. take care.:)
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March 20, 2007 at 11:58 am
The ept tests is evoked potential test(which is nerve responses)this was done early on before the pains really got going!I have had numerous bloods including thyroid all were negative.My neuro is letting the rheumotolgist take care of me for now.He wants to try me on iv steroids as he thinks things have gone on too long without them doing anything.I dont have trouble walking up stairs.I think I would like to have another nerve test as I am worse now than previous nerve test.This has all been going on for just over a year.I feel lucky that I havent got seriously ill or disabled so far.It just seems to be a very slow progression of pain pain pain.I have some days that are almost pain free and then just as you think it might all be going away it comes back.All the pains are not long lasting,but they are very random .
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March 20, 2007 at 12:13 pm
I tried to reply to you directly but managed to reply to my own message!!Im not good with pc’s.Anyway reply is there if you have time to read it .Thanks x
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March 22, 2007 at 11:43 pm
Chili,
Where do you live? Wondering if they wont send you to a university hospital if there is one relatively near to you.
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