I'm glad you found our forum relatively early in your quest for a diagnosis.
You'll find lots of great support here!

I am NOT a doctor, but some of your symptoms (sx) are not in the MG realm; specifically dennervation, the strange sensations you've decribed, and the lack of reflexes. I have an MG dx, but have a second, as yet undx'd condition with many of these same sx's. They are currently looking at Peripheral Neuropathies, MS, Lupus, RA amoung other things on me.

Can you tell us what other conditions have been mentioned/tested for on you?

Also, you mention that you have seen more than one neuro? Can you elaborate a little on that?

Unfortunately there are many, many neuro conditions with overlapping sx's which is why, I think, they have so much trouble figuring us out!

Here is a link that can help explain your binding results and possible causes if it was the iron binding test I think it was. There is a type of anemia that can cause many of these symptoms, not to mention a B12 deficiency. Let's hope for the B12 thing, cause caught early and corrected it can be an easy fix!

http://www.nlm.nih.gov/medlineplus/e...cle/003489.htm

Believe me, we all want to get the dx so we can get on with our lives, but you want the right dx or it's all for naught. I'm glad you have a neuro appointment soon.

I would suggest you list ALL your symptoms going back to when you 1st starting feeling something was wrong, all your meds, OTC's and vitamins with dosages going back to the same time frame, any docs you've seen, any tests you've had (try to get copies and then make copies to give your neuro) and any hospitalizations, etc. Put it in your computer and print a copy for the doc appts. Put it in list form, to make it easier for them to scan for pertinent information - spreadsheets work well.

This will save you time and you can update it as needed. It helps them to get a good overall picture, too, and you don't have to worry about forgetting things as much.

Please ask as many questions as you like - we all understand how frustrating this all is! Let us know how your appointment goes and what tests are scheduled, as we have some AWESOME researchers in this forum that have found information that the docs either don't know or "forget" to tell us that can affect test results!

I hope some of this info helps a little, and that your neuro appointment is real productive!

PS. I LOVE your daughters name!