Help! I'm in limboland!

[Purplemel]

Hi everyone! I'm completely frustrated with not knowing what is wrong with me! I'm 35 and have been having issues for approx 10yrs with no diagnosis! First symptoms that showed up are double vision, droopy eyelid and severe pain in and around one eyeball that was constant never let up! Went to a neuro he did nerve studies and MRI of brain! Everything fine! They preformed a tensilon test which was positive for myasthenia gravis! But no other test were confirming MG! I went home and eventually 4 months later all symptoms disappeared! This happened off and on over the years so I just dealt with it.  Everything went downhill right after I had bowel surgery for my crohns in summer of 09, my surgical site got really infected and by November everything healed but low and behold all the eyeball stuff showed up again lol but with a couple of new symptoms such as large black disc in my vision (not floaters), eyes not tracking tog, neck/back shocks, dizziness/vertigo (especially with induced heat), ringing in ears, pins/needles across shoulders in legs/toes and arms/fingers, balance issues, muscle fatigue/strength, spasms in all limbs, hands shaky, speech changes, heartburn, breathing troubles. Phew! This past attack has lasted a year and I can't handle it any more! Getting doctors to listen has been tiring! Had another brain MRI 6 m ago and they found nothing in my brain but found a psuedotumor in my orbit! They haven't done anything for that too! Now I'm playing the waiting game to get into a better neuro hopefully! I'm just wondering if I'm the only one going thru this crap! And is anyone else absolutely fed up with the way doctors just sweep you under the rug? Thanks for listening to my enormous schpeel lol

[Purplemel]

Thanks guys! I've never had evoked potentials done and I don't have a reumatologist! And no ones done an MRI of my spine! Or a tap! The last neurologist I've had would run certain tests because I was young! Which is ridiculous lol he just said it was migraines! I've been able to manage up until two yrs ago where things just seem to b getting really bad and is affecting my daily life too! I dont know I'm so frustrated with the whole thing! Thanks for listening! It's nice to find a group of people that are going through similar things! And r hear to listen to my rants lol

[Sumanadevii]

Any MRI's of your cervical spine?  

I wouldn't worry about this doctor not getting it.  Just read page after page here.  If you're not getting answers, move on to the next doctor.  Don't stop until a dx makes sense to you.

Sumana

[sadie405]

Yikes--- you certainly have been through the autoimmune ringer.
One of our members on this forum, Pam, uses the ID "doctorsdonthelp" --- sometimes that about sums it up.  Many of us have been there, in a place of having severe problems and feeling swept under the rug when the answer doesn't show up immediately on the doc's palm pilot.
Did the doctor ever order Visually Evoked Potentials? What does your rheumatologist think?

Best,
Sadie