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Neurology (Expert Forum)
Confused, confused...
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Confused, confused...
by Sherry, Sep 12, 2000 12:00AM
Hi! Thank you in advance for any help you may give me. I am 45, completely deaf, (streptomycin- as a baby) and now I am worried about MS. My neurologist said it was *probably* MS. My MRI's have all been negative- I've had one bout with Irisitis/Uvetitis and one bout of Optic Neuritis. I've yet to hear of anyone having both. ???? As a deaf person who lipreads, this is very troubling to me...Your thoughts on this please. What is your take on having BOTH, separated by 5 years? It is possible I've had ON more than once-
ONE time, my B-12 came back low, however further testing (Schilling's, etc) came back normal. The B-12 was re-done, and it was ok. Who knows. I have problems with my feet- probably this is my most constant complaint. My feet hurt- burn, sting, etc. They become STIFF, like they have arthritis (but I don't) and I moan and groan about my feet to everyone who will listen, including some who don't want to hear.... :( I've taken Neurotin and Baclofen for this, however both medications cause my feet to swell. Swelling is not something I've noticed, unless I take medications for it. I'm on Elavil now, and will start Tregretol today.
I do have urinary urgency, and pee often but the sense of urgency is out of proportion to the amount excreted...
I had one episode of *sunburn pain/numbness* on my right front belly, starting at midline and going around to the back midline. It lasted several weeks.
Now- as I said, all MRI's are normal. However, I am having trouble maintaining employment because of my feet and energy.
This is so silly...I mean, my feet RULE my life and I want to take back that control they have.
I know you can't diagnose over the internet- but are these MS symptoms (despite my MRI's) or are there other disorders these symptoms can fall into? Anything we can check?
Thank you- I guess as a deaf person who finds herself with two very different eye disorders at two different times I am really puzzled as to what is going on.
Sherry
ONE time, my B-12 came back low, however further testing (Schilling's, etc) came back normal. The B-12 was re-done, and it was ok. Who knows. I have problems with my feet- probably this is my most constant complaint. My feet hurt- burn, sting, etc. They become STIFF, like they have arthritis (but I don't) and I moan and groan about my feet to everyone who will listen, including some who don't want to hear.... :( I've taken Neurotin and Baclofen for this, however both medications cause my feet to swell. Swelling is not something I've noticed, unless I take medications for it. I'm on Elavil now, and will start Tregretol today.
I do have urinary urgency, and pee often but the sense of urgency is out of proportion to the amount excreted...
I had one episode of *sunburn pain/numbness* on my right front belly, starting at midline and going around to the back midline. It lasted several weeks.
Now- as I said, all MRI's are normal. However, I am having trouble maintaining employment because of my feet and energy.
This is so silly...I mean, my feet RULE my life and I want to take back that control they have.
I know you can't diagnose over the internet- but are these MS symptoms (despite my MRI's) or are there other disorders these symptoms can fall into? Anything we can check?
Thank you- I guess as a deaf person who finds herself with two very different eye disorders at two different times I am really puzzled as to what is going on.
Sherry
Doctor's Answer
by CCF Neuro[P] MD, RPS, Sep 12, 2000 12:00AM
Dear Sherry:
Sorry to hear about your symptoms (please I am not making a pun of your condition). I am sure that you have read about optic neuritis being associated with MS, and about 35-45% of patients with optic neuritis develop MS. But obviously, not everyone. There are other autoimmune or collagen vascular disorders that can cause optic neuritis. Either of these general categories of disease can give one symptoms as you describe. However, as a metabolic person, the findings of aminoglycoside induced hearing loss, the lack of energy you have experienced, the eye findings make me think of a mitochondrial disorder. There are several mitochondrial lesions that can give a person optic neuritis and also a mutation that can cause aminoglycoside induced hearing loss. This might be an avenue to seek out. One can get a blood test to look for the LHON mutations, blood should be sent to Dr. John Schoffner's lab at Scottish Rite Hospital in Atlanta, GA.
Sincerely,
CCF Neuro MD
Sorry to hear about your symptoms (please I am not making a pun of your condition). I am sure that you have read about optic neuritis being associated with MS, and about 35-45% of patients with optic neuritis develop MS. But obviously, not everyone. There are other autoimmune or collagen vascular disorders that can cause optic neuritis. Either of these general categories of disease can give one symptoms as you describe. However, as a metabolic person, the findings of aminoglycoside induced hearing loss, the lack of energy you have experienced, the eye findings make me think of a mitochondrial disorder. There are several mitochondrial lesions that can give a person optic neuritis and also a mutation that can cause aminoglycoside induced hearing loss. This might be an avenue to seek out. One can get a blood test to look for the LHON mutations, blood should be sent to Dr. John Schoffner's lab at Scottish Rite Hospital in Atlanta, GA.
Sincerely,
CCF Neuro MD
I really do appreciate you pointing out some other avenues to check and I will pursue these avenues. It is certainly interesting, and perhaps it will explain these odd things that happen.
Thank you, thank you.
Sherry