I'm sorry that you are on the diagnostic quest. I found it a nightmare and not knowing for me is often more difficult in all aspects of life but certainly w respect to illness.

I will say since I was seronegative I was initially dismissed. It wasn't until I brought in pictures and videos on my ipad that they started paying attention. My first symptom was ptosis. I have huge eyes so even when they were barely open they were still bigger than most. The before/after shots were very remarkable and told the story way better than I ever could.

My advice is:

Write down a time line before you go. For example, I noticed the first symptom around abc date and then it graduated to another symptom on xyz date. Don't get hyper detailed.

Have your photos ready and all in one place.

Make an afternoon appointment when MGers tend to be worse (vs am).

If the dr doesn't seem like he or she is going to be invested, cut your losses and move on. There will be someone who gives this the attention it deserves.

Best of luck.






QUOTE=bizzymum42;1022757]Neurologist said I've finally given her enough to refer me to MG Clinic at UC Davis - 2hr drive. She thinks I have MG...but with some doubt, I think mostly because all tests are negative, so far (blood, emg). But I respond to Mestinon. Why all the BUTS with this disease? Can we please close the door on doubt? I'm feeling like the kid who can't pass the SAT's but knows everything on the test.

I had a whole list of questions for her ---she said UC Davis will answer those and handle my long term care. She's sure? No other meds and no increase in Mestinon.

And to boost my confidence the nurse tells me UC Davis MG Clinic hasn't been accepting their referrals. Um, why is that? HUH. But I don't want to put energy into that. POSITIVE MOJO TO UC DAVIS...YOU WILL TAKE ME TO YOUR LEADER!

Can we call this a milestone in what seems like a long, exhausting, heart breaking journey? Mantra: What I need I have. Including all the support.

What shall I do to prepare for my appointment? Pictures? Medical Journal? Get a note from my shrink???! What will they do now that I'm on Mestinon?

Thanks!
Jen[/QUOTE]