[gtg287y]

I have been bouncing around to various doctors for most of the year, and the newest one is a rheumatologist. As I get more experience dealing with doctors, I realize that first impressions are very important, and want to know what sorts of information a rheumatologist might be interested in.

Things I think would be appropriate:
* Severe illnesses or vaccinations that might trigger my immune system (since rheumatologists deal with immune system problems, right?)
* Basic description of my symptoms and triggers.
* Descriptions of tests performed and their results (in case medical records aren't faxed correctly)
*Explanation of why I was referred to them.

Is there anything else I might want to include? Was it a rhematologist that diagnosed any of you?

I'm worried about making a first impression since I've had the full gamut of responses, everything from "I have no idea what is going on with you, let me write you a referral without doing any tests." to "I know exactly what is wrong with you, no wait, that test came back negative, let me write you a referral.". I'd like to at least get to the testing phase with this doctor.


-Jenny

(optional section)
My specifics would be:

* For around 8 years I have experienced flacid "collapses" in which I remain conscious. I often feel weak, unbalanced and dizzy before and after. I will generally be able to sit up again after a few minutes, but rarely can walk normally the rest of the day.

* I had one similar episode 8 years ago after eating a lot of season salt, and several identical episodes 7.5 years ago a days or weeks after having a week of vomiting and fever.

*Symptoms have been getting worse and worse over time.

*Exertion, Heat, Hunger and Tiredness appear to worsen symptoms (sometimes symptoms clearly worsen WITH Exertion, other times AFTER resting after exertion)

*This year, I began to have sudden extreme hunger, numbness, tingling, sensations of heat or cold and muscle pain along with normal symptoms. These began shortly after several days of vomiting and fever (the first since 7.5 years ago). Months later I was found to be B12 deficient (but unlikely I was when symptoms began)

*This year my symptoms began exponentially worsening, having 3 times as many collapses in 6 months as I do in most years.

*This year I had several months of EXTREME symptoms (the least exertion could leave me limp on the ground, unable to walk unassisted for hours afterwards, at my best I could walk for several minutes at a time without symptoms). This happened several months after the vomiting and fever and a few days after receiving a vaccine.

*In addition to weakness, I will often have weird gait problems when I will feel pulled in various directions, like a zombie. My neck will be to one side, my back arched, my legs stiff and my hips waddling.

* I have negative Acetylcholine receptor binding antibodies, a lesion in my cerebellum that appeared to be old (found before symptoms worsened this year), and am negative for the six (of about 30) most common genes for Periodic Paralysis.


If anyone bothered to read the above and has any advice for moving forward I'd love to hear it. The possibilities on my radar are Myasthenia Gravis, Multiple Sclerosis (because of the lesion) and Periodic Paralysis.

-Jenny