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Avatar universal

Too many symptoms and tired of going to dr's!

I have been undiagnosed for 3 years now.  It started with urinary frequency and bladder pain, i thought i had a UTI, but it was microscopic blood and not bacteria, then i got very bad nausea, dizziness, numbness in my left arm, chest pain, gagging, muscle twitches, i lost 15 lbs in 5 weeks, i was severrely depressed, i had an mri which came back abnormal with white matter lesions, orthostatic bp,  lumbar puncture just showed slightly elevated protiens, blurry vision, ears ringing, no bands in fluid,  lesions atypical for MS.  I was so shakey, weakness on left hand side, and my dr said it was a case of ADEM from infection or something, but possibly MS, but not likely.  I've had multiple MRIs since and no change at all. Seeing an MS specialist and she doesn't think it's MS.  I now have some strange palpitations adn i don't know if it's coming from my heart, but it almost feels like a contraction or something in my heart/neck.  I feel like i have to gasp for air. I have the feeling of a lump in throat, and have enlarged salivary glands.  I have been tested for everything, sjogrens, lupus, ect... I have hereditary hemachromatosis diagnosed early at 30 and get treated every 3 months.  I now found out that i have an abberant subclavian right artery on my last mri.  I also had an MRA that showed a vessel that was narrowed.  One neuro told me that my lesions were all over, over 50 black holes and looked more 'stroke like'...i dont' even know what type of doctor to go to.  I now have arthritic pain, very very sore feet the am, i'm  138, 5'7", athletic, never smoked adn was healthy before 2011.  I have taken antibiotics for lymes because i had some test look suspicious for lymes.  i live in high lymes area. I wouldn't say i have 'episodes' -- i am always fatigued, tired, i have improved but something is not right - ears flutter/ring, hands go numb, feet, tingling in left leg, damage or weakness on left leg/side.  What doctor should i go to?  I don't know if it's autoimmune (all tests came back neg), vascular or maybe it is just an issue with my heart or something from hemachromatosis.  I'm very tired of going to dr's!
4 Responses
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612551 tn?1450022175
While I doubt you''ll find any answers you may want to post  on:
http://www.medhelp.org/forums/Undiagnosed-Symptoms/show/95

which seems to be your question.

Try reading some of the posts there and you may find something helpful by trying to help others.
Helpful - 0
Avatar universal
Please try again and investigate in Lyme disease
Especially that u had abnormal results
It seems that one course of antibiotics didn't clear it up
Try finding Lyme literate doctor ( llmd) in your area so he can give u the right treatment and hopefully will be back in track again .. Be well and please keep us posted..
Btw.. I am going through something similar for one year now with no diagnosis so I know how u feel
Helpful - 0
Avatar universal
Also post your question in the Lyme disease community..
A lot of great  members  there to help
Helpful - 0
1702615 tn?1421812248
I agree with pursuing lyme possibility AND make sure your vitamin D levels are normal to high normal...otherwise, if low, look into vitamin D3 (not 2) started immediately as low D can cause nerve damage as well as decreased immunity and is showing to be connected to MS and other diseases.
Helpful - 0
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