Quote:
Originally Posted by Dejibo
I was dx from optic nueritis and brain lesions. I also have a brain tumor that has decided to just sit there and stare at me. An MRI of my gut showed lesions right in the spot where the vagus nerve is and the phrenic nerve, but this was years after my dx with MS.
There are a small handful that have been dx from gastroparesis as the main presentation, but that is a rare, let me say extremely rare way to be dx.
Please start with the GI guy and let him do the research. its best if you go to a university hospital or at least a teaching one. BIG center is better for this, since they have access to the research and are willing to go hunting for zebras.
GL  |
Thanks, Dej.
I didn't have any lesions on my spine or brain MRI's in '07.
I have gone to three big center's Cleveland Clinic, in Ohio, and University of Chicago, IL., and Rush University, also in Chicago, IL.
The 1st time I went to CC, I saw a Neuromuscular Neuro, and all she saw was my balance was bad, and she dx'd the small fiber neuropathy in my legs and thighs, but had no idea the cause.
2nd time I went to CC, was when I told my G.I.Doc's nurse to tell him that my Neuro didn't pay any attention to what the G.I. Doc had explained to him about the nerves in the internal **** sphincter muscle.
She told my G.I. Doc, and she called me back and said he said my best best was to return to CC.
Well, I made my appt. on-line, explained that I needed nerve testing done on the internal **** sphincter nerves.
They made an appt. with a G.I. Doc, who ran me through a ton of tests in 2 & 1/2 days, and didn't tell me until my follow up appt, with her on the 3rd day, that CC doesn't do the nerve tests anymore.
At my very 1st appt, I told her why I was there.
She just about killed me with the tests, because I had several a day, and each one required something to clean out the bowel, (including a colonoscopy, the day before my defogram) so by the time on the
3rd day, I had my 2nd defogram, the results were incorrect, because everything was pouring out of me, in the waiting area.
(I had my 1st dynamic defogram at University of Chicago, and their results were right on the money.)
In their Lab, at CC, they blew two of my veins. And I have terrific veins, very prominent and easy to draw blood.
My sister-in-law who is a nurse, insisted I file a complaint but CC didn't do anything about it. In the end, it was my word against hers.
I learned that day, never to go to the doctor without my DH. But, at the time, we had our Yorkies with us, and he waited in the car with them. (I lost my older of the two, 2/28, due to renal failure. She almost made it to her
15th birthday and she was my "Heart & Soul" dog.)
So, all I can hope now is the Neurosurgeon this afternoon, will not give up on me, and if I have no problems on the MRI, he will refer me to someone that understands what is happening to me.
I'll let you know.
Thanks so much for helping me.
Chelle
P.S. Noticed lately, I am getting a lot of liquid type diarrhea. Which is not how my bowel issue began.