Sunday, September 25, 2011

More doctors...more answers!

We made another trek home this weekend for more doctor's appointments. This was a double whammy. I saw a hematologist in the morning and a neurologist that afternoon, both at UT Southwestern Medical Center. This is a lot of info and medical talk, but I want it documented for myself.

Just to back up a bit. I went back in August and saw a rheumatologist at UT Southwestern. It was THE most frustrating appointment I have had!! This guy was super rude and blew all my symptoms off saying that he saw no evidence in my blood work of lupus or antiphospholipid. He was way more concerned with my 'episodes' and not worried at all about any other problems. We left so frustrated and confused. We referred me on to a hematologist to do more blood work and look for other blood disorders and a neurologist to look further into my episodes. I have been so discouraged feeling like we were going to be starting over after we thought we had made progress with my diagnosis. However, we discovered this weekend that we will not be back to see him, as he is obviously the one that was wrong.

Fast forward to this week....
We saw the hematologist early Friday morning. He was the original doctor I wanted to see because he is huge in the antiphospholipid field. He was SO informative and Bradley and I both felt like we had light bulbs just lighting up like crazy. He deals with blood issues obviously, but showed us where the lupus antibodies were in the lab work and why that diagnosis was given. He also explained that there are MaNy antibodies that can tell if you have antiphospholipid disorder. There are two main antibodies, and a minor third. I had the minor third one. Basically, with the blood work that he took, he will determine for sure if that is a true diagnosis or not. The antibodies must be present in two tests at least 12 weeks apart. So this will be the deciding factor. This doctor felt like it was very likely that it will be present judging by my symptoms. He was very open about my risk for a blood clot, risk of pregnancy and miscarriage, and talked to me about ways to know if I have a clot and also how to help monitor my own palette count so it doesn't get to low. I will receive my diagnosis on the antiphospholipid in a few weeks and if it is confirmed I will see this guy every six months for continued monitoring. There really is no treatment for this disease. He said that the lupus medicine I am on is perfect and there has been some research to show that it also helps with the antiphospholipid. He also explained that my 'episodes' could be linked to the antiphospholipid. (this guy is a research giant) and he has found evidence of the antiphospholipid and lupus causing muscle spasms in the basal artery due to inflammation of the connective tissue. These muscle spasms cut off blood flow to the brain causing me to 'pass out.' VeRy InTeReStInG!!!

(I will spare the details of the lady that blew a vein because she insisted on using a needle that was too big for my little veins!!!! GRRRRR....)

On to the neurologist, we saw him that afternoon after lunch and lots of pondering the hematologist information. We felt like the connection between my diseases and muscle spasms all made so much sense. We had decided to go talk to the neurologist and see what he had to say, but I really feared he would do what all the former neurologists I have seen do, expect it to be epilepsy and send me for testing. We were very apprehensive as we began talking to him about what my 'episodes' look like. Dizziness, hyperventilation, clinched muscles, shivering, and loss of memory. He immediately began asking about anxiety and thinking they were panic attacks. Bradley and I exchanged.."Oh Great!!" glances. However, once we got further into the explanation of everything that we had learned that morning and my diagnosis, the neurologist said, "OK, yeah. That sounds like your having muscle spasms and that is how your migraines are manifesting themselves." I heard angels singing!!! It was unbelievable that these two doctors that did not know each other (we asked) were 100% telling us the exact same thing!!!! The neurologist was so productive! Again, it was so evident that he knew his stuff and was all about getting me relief. I am a chronic headache sufferer as well as diagnosed with basal artery migraines. I have a headache at least 5 days a week, and usually 7. They vary in intensity, but since I can remember from 1st grade (when I had my first 'episode') I have always had headaches. I don't even take medication anymore because it doesn't even effect me.  I am not a normal 'headache' migraine sufferer. Instead, I get these spasms causing many other manifestations. It was CRAZY to hear this guy pinpoint everything I feel!! He has a long term plan to have me completely headache free in less than a year!!! I cannot even imagine! We are going to begin with a sleep study. Apparently, my sleep habits have him very worried that there may be some apnea issues causing headaches or my intense stiff neck issues. He also prescribed massage therapy to try and alleviate the spasms all together, hence no more episodes!! (Yes, I said my doctor PRESCRIBED massages...yeah I am a little bummed about that one :)! )  I am also going to work down to no caffeine for about 4 months and see if that makes a difference. He said often in my case it doesn't, but occasionally it feeds headaches. It can create a vicious cycle of feeding headaches that crave caffeine.  We are also going to look into getting my sinuses cleaned to get my allergies under control. Basically, little by little alleviating any reason for headaches! Yippee!!

So I know that was SO much more info than anyone really cares to read. I am so excited about the possibility of getting my health completely under control. And headaches be GONE!!!! (Actually he said less than 6 a YEAR, but that is nothing compared to 6 a WEEK!!!) I still have a long road to hoe with many more doctors visits, but this was the first time I didn't feel like I was just getting passed on. God is so good and gave me TWO doctors that are willing to invest in my health to see that I have a long term plan for my diseases. Both doctors are working around the fact that I live in Lubbock and getting all my testing done here so I don't have to drive back all the time! It was so great to get solid answers from two doctors that are completely on the same page and unknowingly working together!!

1 comment:

  1. Yeah Joni...I am so happy that you were able to not only have answers to your questions, but hope for more peaceful living!