After I was pregnant, but before we knew I was pregnant, we got some potentially scary news in results of blood work.
When I followed up with the neurologist (finally!) after my crazy migraine that caused me to be admitted to the hospital, I was diagnosed with hemiplegic migraines. It's basically a rare type of migraine that causes stroke like symptoms without the brain damage. Most of the time these migraines do not put you at a higher risk of a stroke. Sometimes people have them once every few years and other times once every few months. They can be caused by a wide range of things... some as simple as vitamin deficiencies... some some very complicated and complex disorders. The neurologist ordered several blood tests to see if we could get an idea of the cause of my migraines so that we could try to prevent another one from happening.
Shortly after I had the blood work, I got a call from a nurse explaining that I had a few vitamin deficiencies. The neurologist called in some prescription supplements and I thought I was good.
A few days later I got another called explaining that my ANA was very high, meaning that I have some sort of auto immune disorder. Based on some of the other results, the neurologist thought that I most likely have lupus and was referring me to see a rheumatologist.
Then a few days later I got another phone call. This time explaining that I have a MTHFR gene mutation. Apparently this mutation can cause several different issues. The neurologist referred me to a hematologist for father testing.
It was kind of scary when I found out I was pregnant shortly after we found out all of this other stuff, but didn't really have any solid answers yet. My OB was very reassuring and explained that none of these issues are something that could cause harm to the baby or me as long as we know about them. She told me that it would be considered a high risk pregnancy, but I shouldn't worry.
Thursday August 4th
I had a follow up appointment my OB in regards to my miscarriage. She said it appeared that my body was doing what it was supposed to and aside from the migraines and back pain, that all was well. Both the migraines and back pain are most likely a result of my hormone levels dropping quickly, so hopefully both will disappear soon.
She said as far as the miscarriage, she couldn't say for sure without testing, but most likely because of the timing, it was a chromosomal issue with the baby. She explained that any auto immune issue or MTHFR mutation complication normally doesn't pregnant a problem until closer to the end of the first trimester if left untreated. If we want to try for another baby, her suggestion is to wait until we have official diagnosis from the hematologist and rheumatologist so that we official know what we are dealing with and how to treat it. So.. we shall wait and see...
Monday August 8
I had a follow up today with the hand surgeon. I'm still having lots of pain in my hand that I had surgery on in April. He thinks that I have a lot of extra scar tissue (most likely caused by whatever is going on with my immune system) that is causing the pain and the decreased range of motion. I've also been having lots of numbness and he's concerned that there is a pinched nerve either in my wrist or my elbow. He put in ordered for an EMG to see what is going on with my nerves. Hopefully after that we'll have some answers and came back my hand more useful again.
Wednesday August 10
Today I saw the hematologist about the MTHFR gene mutation. Apparently research used to show that these gene mutation increased risk of blot clots and all sorts of other things. Recently though, thoughts have changed. The newest research shows that with certain conditions its important to know if you have the MTHFR gene mutation, but unless you have these conditions it's nothing to worry about according to the hematologist.
Thursday August 11
Today I had an EMG on my left arm to see if there was nerve damage causing the numbness and tingling my my hand. The good news is that all the nerves in my hand/arm are all good. The bad news is that I got zapped and poked and still don't have any answers.
Monday August 15
I had a follow up with the neurologist today. I'm still having headaches on and off and the meds they had me on to make headaches go away just made me fall asleep, but I still woke up with a headache. She gave me a different medicine to try for when I have headaches, but as of right now she doesn't want to try anything else to prevent the headaches until I see the rheumatologist to see what he has to say. She says she has a feeling that once I start treatment for whatever is going on with my immune system that my headaches will go away.
We also talked about what the hematologist said about the gene mutation. She said that because I have crazy migraines, that knowing I have the gene mutation can be helpful in treating them. For example, there are a few headache rescue medicines I've tried that make me really sick... and they make me sick because of the gene mutation, so we know we need to avoid that whole class of drugs to treat my headaches.
Thursday August 18
Today I saw the rheumatologist. First I talked to the nurse practitioner...for almost an hour. She asked lots of question and went over all of the blood work that I've had done up until this point. She then did an exam and checked out all of my joints and asked more questions. Then she went and talked to the doctor a minute and they both came in and talked to me.
The thought is that I probably have lupus, but we aren't to the point yet when I can have an official diagnosis. There's a long list of symptoms and tests that can be positive for a lupus diagnosis, and a patient needs to have at least eleven of them before an official diagnosis can be made. I currently have quite a few, but am not at eleven yet. They ordered more blood tests that are very specific to lupus and ordered x-rays of all of my joints. Some of the blood tests take about two weeks for results to come back, so I go back in three weeks to go over all of the results and hopefully get some answers and a treatment plan.
She explained that they will treat me regardless of an official lupus diagnosis or not because my ANA is so high, but she wants to wait until she has all of the other results back and can see the big picture before decided what the best treatment would be.
After my appointment I went to the lab where I had way too many vials of blood drawn. And then I had way too many x-rays taken.
Hopefully in three weeks we will have some answers, can start treatment, and start feeling better. After my appointment today, I think lots of the issues that I've been having the past year and have a half could be by whatever autoimmune issues I am having... everything from the fatigue, soreness and stiffness, numbness in my hands and feet, rashes and itching, sleep problems, headaches and migraines, and so on...