Have you been tested for Celiac Disease and IgA (if it's low, it can be a false negative)?

Do you take acidophilus or eat yogurt to keep good bacteria in your body?

If you have clinical PTSD, you have to seek out an expert to talk to about it or it WILL get worse. There are tools you can use to keep it from happening too much, even while doctoring. Although I have to say that I saw a new doctor last week and had one of my worst PTSD episodes ever. I was able to work my way out of it though! This is not a thing you should handle on your own. There's a new "touch" therapy they're doing with Vets and other people with PTSD and it seems to be working.

I wish you had a very good immunologist to pull some of this together for you. And if you haven't demanded to get that immunoglobulin testing for your records, just write a letter to the medical records department and get it. They are expensive tests and you don't want to have them redone if you don't have to! It's your right to have the results.

I know how much doctoring can wear you out and it's useful to take a break from time to time. You can get to the point where all you see is the health issues and not WHO you are! I am not the sum of my health issues but it can feel that way, especially when you see yet another doctor and have to list everything wrong with you. I try not to think about what's wrong with me on a daily basis but what's RIGHT with me.

It has not been a fun time for you. The more difficult the situation is you're going through the more fun and the more coping skills you'll need. The most important thing is taking care of yourself, no matter what that means.


Annie

Thanks so much Annie!!! I appreciate that!

As far as the IgA, I was tested once, but i was already on IVIG, so they weren't sure if it was accurate.. it was normal

The celiac, I have been tested for several times as well.... however I was already gluten free.. As i had GI issues that started the entire mess.. I was desperate to feel better, I was hospitalized for the GI stuff .. and researched it all, and have 2 family members with posible celiac.. so i went strictly gluten free and have been for 2 years now.. however I'm starting to have GI flares despite the diet now that I'm stretching the IVIG further out. I still stay gluten free, as i'll try anything to help, and frankly if I can control something in this whole mess, then that makes it feel better.

as far as the PTSD thing.. it's mostly from that first dr appointment when he said he thought I had ALS ( i was 30 years old, just had a baby.. it was a friday afternoon he said it so casually and then said see ya monday for the the emg etc).. ugh.. now I fear going to the Dr and hearing bad news again.. I was alone in the office at that time.. I'm getting better about it.. but I have feared the Dr's offfice extremely since then.. ugh.. too many practioners out there that need to brush up on their patient and clinical skills!

Did someone actually diagnose you with PTSD? If not, you should really be evaluated by a professional to define exactly what's going on. I had a very thorough evaluation and treatment and everyone who is feeling traumatized for any reason needs additional help. There are many different things that could be going on and, therefore, the treatments would vary. Good luck.

Annie

I've never heard of anyone building up a tolerance to IVIG. Perhaps you just need a higher dose. I definitely feel better with more, I just can't tolerate the side effects. The dose I'm on is what I can do without side effects. When I was in crisis in January, I got three days instead of two while I was in the hospital and it made me feel better. My vision got nice and crisp. I wish I could get three days all the time! But in all honesty when I'm doing really well I can do fine on two days every three weeks. At least I pulled that off for about 3 months this fall, so that's my story and I'm sticking to it!

I take Mestinon as well but I don't think it really does a thing for the MG. I also have POTS and it helps that a great deal though.