Why?

Why is usually the first question people ask when they get diagnosed with an autoimmune disorder/disease. To be completely honest, I am not diagnosed with a specific autoimmune disease yet. For years it seemed my old primary care physician didn't really listen or didn't understand. It was always allergies, stress, residual problems from having pneumonia umpteen times. Then, came the lack of insurance and financial difficulties when my husband was laid off, so only serious things brought me to the doctor (severe eye infection followed by pneumonia).
After that came the nurse practitioner who I started seeing after getting pneumonia yet again. She was big on melatonin but other natural/herbal things she didn't like. She did send me to a neurologist for my left-sided facial numbness and tingling. The neurologist did the usual physical exam tests and I think they were all negative except one. The heel-toe walk barefoot in the hallway of her office.

Now, I always, always, always loved walking on those concrete parking barrier things and the brick flower garden wall in a heel-toe manner. I would take my son to the park and we would walk heel-toe on the different beams, etc. So it was a complete shock that I was unable to do it at the neurologist appointment. I literally fell sideways! The neurologist's reaction? "Have you been drinking this morning?" Huh? Have I been drinking this morning? It wasn't even 10:00 a.m.! She had me try it several more times and each time I toppled sideways. I tried so hard to concentrate, to be able to take at least two step but wasn't able to.  I can only imagine how goofy I looked arms out trying to hold onto the floor with my toes.

Her diagnosis? Trigeminal neuralgia. I asked her wasn't trigeminal neuralgia like pretty severe pain, but she just said not always. I said, "And that would cause the numbness/tingling down my chest past my breasts?" Oh, no it wouldn't do that, she didn't know what would cause that. She said she could prescribe Tegretol to help it, but I said no I didn't want on an anticonvulsant. (Seizures are an entire different issue . . . )

So things stayed pretty much the same until late fall/early winter 2012. That's when other symptoms started to show up more frequently. I kept getting really bad migraines that would start in my neck before radiating into my head and would last for up to a week. The neck pain stayed the entire time and my trapezius muscle was extremely tight too. The mild general malaise and fatigue got progressively worse in 2013. I couldn't seem to remember things--simple things like when the phone bill was due; did I pay it or didn't I? Then, it was just like oh my God . . . WHAT is wrong with me?! Accompanied by bursts of spontaneous crying.

My right leg started to "give out" without warning, and my right foot seemed to have a cellphone set on vibrate inside of it. It would "ring" about five times and then stop. My right arm would occasionally feel like it was so asleep that it was dead and I couldn't move it for several minutes.

Through all of this I was completely and utterly stressed! My husband, despite what he said/says, thought I was lazy or crazy or both. The fact that I would say the wrong things didn't help either. For example, when dinner was ready I would say "Phone is ready". Oh, and thingy and "dubadada" have become frequently used terms.

In late spring/summer of 2013, things just took a huge downward spiral. Everything seemed to be catching up to me--the stress, my mind, insomnia, anxiety, etc. This is also when I apparently had a seizure in the car. Thankfully, I was not driving but it was enough to freak out my husband and son.

In July 2013, I had to resign from a position thinking I would get better without the added stress. It kind of helped, or I forced myself to believe it did. I still had headaches, muscle spasms, still felt like I had just participated in a triathlon, still felt fuzzy, and just overall felt utterly useless.

In September, we went to my husband's uncles for hubby's birthday party. For a few days before that my balance had been off. As in I would be walking and every fifth step or so I just lost coordination/balance. At the party, I apparently blacked/blanked out and my arms/hands were twitching. Hubby and mother-in-law talked to me about it outside, but I was embarrassed and was so angry that "everyone" knew. I told them I would try to find a decent doctor sooner rather than later and try to get some answers.

Hubby said that I should see his uncle's doctor. He said his uncle liked him and thought he was really a good doctor that listened. So in October I called and made an appointment which my mother-in-law drove me too. I filled out the questionnaire in the waiting area and then went into the office. I told the doctor that I hated seeing doctors, that they usually thought people were lying in this area, that most of the doctors in the area were idiots and did not seem capable of listening or actually hearing what their patients were saying. He chuckled at those statements and basically agreed saying that he was from Florida and how crazy/different things are here.

He listened and did his own mini neurological exam including the dreaded heel-toe walk which I, again, failed at miserably. Patellar reflexes were different from just a couple years earlier. Left leg was okay, but the right leg shot out straight almost hitting the doctor. So he sent me for an EEG and a echocardiogram.

I went back to the doctor after the tests to hear what he thought and get my blood work results. He read them. EEG negative. Echo mild aortic insufficiency shouldn't cause any problems. I felt a little relief, but at the same time I was upset because then it was all in my head. Then, he got to the labs and said, "Well it's definitely an autoimmune process but which one I don't know yet." Ugh . . . I swear it felt like I was kicked in the stomach. I said, "Are you serious?" His answer was, "Yes, it is autoimmune. We should wait and see what happens for a while. I'll give you a shot of vitamins and prednisone and see if that helps you any, with your permission of course."
So I agreed to the shot all the while in a daze. The shot did seem to help a little bit or, again, I willed myself to believe it did. Hubby and mother-in-law would ask how I was and I didn't want to say the "wrong" thing.

Deep down I really expected him to say you're fine, everything is normal, you must have mental issues. Now that it IS something--even though I am still waiting to know what IT is--I know I'm not just crazy or lazy. Of course, I have to go back when whatever it is is acting up again so that hopefully I can get a definitive diagnosis and not just the blanket autoimmune process. This would be especially helpful so that I can get specific treatment that may lessen symptoms, hinder progression, etc.  

All of my symptoms are not listed in this post because that would take way too long, and this post is  already pretty long. However, I do keep track of my symptoms, when they happen, and for how long to try to find patterns, and maybe help with getting a diagnosis.