Undiagnosed and Baffled

[Dewtek]

I have Episodes NOS that mimic seizures, migraines and TIAs.  I have a mulitude of symptoms that can be attributed to a lot of diseases.  I have been diagnosed with lupus, then it was taken away; complex partial seizures, then it was taken away; temporal lobe seizures, then it was taken away.  I have been diagnosed with malabsorption syndrome; renal tubular acidosis; secondary hyperaldosteronism; interstitial cystitis; delayed gastric emptying; GERD; difficulty swallowing due to muschle probelms at the back of my tongue as well as flashing liquid into my wind pipe. I have edema in my ankles and my face.  I can go on and on with the different types of infections I have had. I have diabetes controlled with diet.  My blood pressure was really low, but is back to normal. I have three lesions on my brain that indicate MS but the doctors don't think it's MS.  I've had Lyme disease and was diagnosed with Rickets last summer.  I passed out and sustained a closed head injury which caused vertigo.  The journey to a diagnosis and agreement amongst medical professionals has been long and at times frustrating (for both me and my doctors).  I have gone to some of the best specialist in Atlanta, have been to Mayo in Jacksonville, and am currently getting yet another opinion from Emory.  Emory feels it is either Parietal seizures or hemaplegic migraines.  They say it can be MS or TIAs (unlikely).  I am being admitted in July at Emory for a second VEEG in 5 months.  The first one was not done at Emory and it showed temporal spikes.  I am always told I have very complex medical conditions, but a diagnosis is evasive.  The problem is, I've agreed not to drive because of the seizure type episodes; I am working from home a lot because I can't manage a full day of work; I have significant (at times) cognitive issues; I have almost no grip in my right hand, shoulder pain and numbness on the right side of my face and sometimes it goes clear down my right side.  This is an issue because I am right handed.  My optic nerves are different colors and one eye dilates with light and the other constricts.  I at times have such blurred vision I cannot see.  It doesn't last more than a couple of days.  The problems are escalating and I am experiencing new symptoms gradually.  Where is the best place to turn for a multitude of issues with medical issues that appear to be either neurological or metabolic?  I am 48 years old and would like to return to being more self sufficient.  One of the issues I have initially with most professionals is that I present well.  I am worried because my family has to miss a lot of work to get me to doctors appointments, tests and physical therapy.  The NP at Emory indicated that if I didn't have a great employer I would not be able to work at all, and would possibly need 24 hour supervision.  Can you suggest anything different that I can do?

Thank you!

[*Stormy*]

Hmm..I am wandering through these posts for a different reason but when I read this I thought...I wonder if this person has Chiari?

I have Chiari, was dx Sept 2009 and had the surgery for it in December. I had a very complex list of problems too and I went through several "what if" diagnosis' b4 I finally came to the right one. Even if you have had a brain MRI...Chiari can be listed as incidental or missed all together, mine was!

I suggest you take a look at the Chiari forum: http://www.medhelp.org/forums/Chiari-Malformation/show/257 and see if the posts there sound familiar to what you are going through.

Carolyn

[Brainiac7]

WOW...it sounds a lot like chiari...have u heard of Chiari 0 if one is not showing up on MRI?  these symptoms are VERY SIMILAR to chiari 1 malformation. I am assuming you have had a brain MRI?