Hi all,
Been reading and not posting a thread, Really waiting for a Real Diagnosis. We have got the 2nd opinion from John Hopkins back, 1st one was MS, theirs was not typical ms, but inflammatory Demylination. Dr. ordering pet scan. Don't really know what that will show. My inflammatory markers are elevated. As you all are, sick of this rat race!!
Had trouble swallowing lately, since little before the Wedding, thinking it was stress, Have to have a endoscopy again, thinks I have another stricture. Ent dr. ordered hearing and dizziness test, has anyone had it done at the ent dr.? They said my dizziness is not caused by eyes and ears? Is it caused by my brain lesions then? I just don't understand, I thought If I had a dizziness test, it would surely show them I was dizzy. This is really getting ridiculous. I am really ready to give it up.
We had a wonderful wedding with my daughter and new son-in-law. Was a carnival wedding, and it was in a little chapel, on Half Moon Cay Bahamas. It was wonderful. I loved the cruise! We rented a private cabana for the wedding reception. I will have many wonderful memories!
Just wanted to let you know, I have been here, just didn't know what to say.
Hugs to you all!! Deb

So, you are atypical like me, huh? I really thought I was the only one with the demyelination diagnosis. Sorry you have to be here, but glad I'm not the only one! My neuro always says it is MS, just not the normal kind so none of the drugs will work. I am on symptom meds and get IV steroids when I need them.

I have done the dizziness testing at the ENT twice now. Both times they said it proved that the problem was from my brain and not my ears. It's kind of a rule out thing. They are just making sure it isn't being caused by something in your vestibular system.

It does get frustrating. Sometimes I really want an answer, but I don't have the energy to go through all the tests again. After five years, I have given up on the "real dx" and figure I'm just stuck where I am.

I hope you get some answers from your PET scan. That is one test I have never had and I thought I had them all!!

Your daughter's wedding sounds like it was fabulous. I've always wanted to go to the Bahamas.

I'm so glad you started this thread. Keep posting, Deb. Just jump in wherever you want.

The wedding sounded beautiful! Great memories- definitely!

I have seen a neurotologist for my vertigo. Not sure what type of tests I've taken for the dizziness. I have MAV (migraine associated vertigo) and the doctor said I have an inner ear disorder but didn't elaborate more than that. However one of the nurses also told me that something else is wrong but refused to tell me- and so did the doctors. Grrr... Verigo for me is horrid. Like you, I too have been having problems swallowing- food/liquids. I have detemined it is a good way to lose weight! LOL Today I ate horrible due to anxiety. Just angry at all the doctors and getting the run around with going here there and everywhere. I do understand what you mean. It is frustrating.

Hang in there!!

Hugs

Coffeegirl

Hi Deb, nice to hear from you. I'm sorry that you are going thru the same old runaround and for your swallowing problems. I hope you have some answers and feel better soon.

Congrats on the nice wedding. Sounds like you had a blast.