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Avatar universal

Frustrated with conflicting opinions

I have had litany of symptoms over last 20 years of which the doctors cannot seem to agree.  Moved to Georgia about 18 months ago and drs disagree with previous doctors - still feel bad and no idea what to do.  Feel like pickle in the middle.
-Have history of optic neuritis (had severe migraines and could see blind spot for about a year - no cause found and has not reoccurred),
-still have frequent migraines
-periods of extreme fatigue that I'd say I have no stamina at all
-positive ANA (which has fluctuated from 1:40 to 1:320 nucleolar pattern),
-spontaneous rashes that come on slowly and go away slowly even without treatment (rash reduced with hydrocort cream but still itches) - dermo not sure but thinks maybe eczema
-itching especially at night all the time, allergy testing negative,
-low IGG with no response to pneumonia vaccine (between 500-550 with low at 700 per test),
-diagnosed with cataracts (@ 45 - left eye much worse than right so had surgery on left, cataract still in R eye),
-severe dry eyes,
-recent diagnosis of convergence insufficiency,
-diagnosis of abnormal eye tracking associated with central balance problem in brain with ENG (had test because always running into corners, feeling off balance ), MRI brain normal,
-Failed sweat test (I noticed over the years I had stopped sweating and never had to shave anymore) at the Mayo
-Abnormal QSART
- thyroid test normal
-severe pain and burning in my feet and legs up to my knees.  Patches of feeling cold or hot on legs.  feeling of something crawling on them and across my back (have had spine MRIs all negative)  EMG negative
- now off/on numbness in right ring finger and pinky(same time) and then other times numbness in thumb, pointer and like half of middle finger.  starting to happen in left arm as well.  Orthopaedic says carpal and cubital tunnel with EMG results while neurologist total disagrees based on those results.
-random patches on my back going numb and my feet
-history of legs hurting/red with blotchy white dots
-normal detailed autoimmune tests (i.e. sjogren's normal, etc)

Problem is Dr's here in Georgia don't agree with diagnosis of Sjogren's with small fiber neuropathy.  I was on Methotrexate shots which did help tremendously with the pain in my feet/legs and creepy crawly feeling but now they reluctantly are giving me the pills and the pain is coming back.  Am so confused!  Am I missing something and could it be something else?  Have seen multiple doctors and they keep shuffling me around and piece mealing me. Can't afford to go up to Mayo couple times a year :(  Could it be something else?  Wouldn't I have been positive for the Sjogren tests?  I am miserable and frustrated.
2 Responses
8221281 tn?1397570972
So,let me get this straight. Your prior therapy with MTX was working fine. You moved, your new doctors took you off and now you are sick again?
Sounds like you need a new doctor
Avatar universal
I don't disagree.  I have tried several.  They want to write a prescription and spend 10 minutes with you.  I went to one that told me it was all in my head even before he examined me or reviewed the Mayo records (glad my husband was there cause you couldn't even make up that meeting !), was sent to another doctor and turns out he retired the next week so left hanging (although he was good - he just made a bunch of referrals).  The stories go on but I'm looking for a doctor that won't whip our his prescription pad first thing and is willing to work with the Mayo.  I'm sure there is one here but admittedly I'm tired of going through the process of trying to find them.  Thanks for your concern :)
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