I met with Dr. Goodman this morning. What a roller coaster of emotions again! Most importantly, my brain MRI was all clear! Thank The Lord! He thinks my head pressure issues can be attributed to the POTS (probably a mix of poor blood flow and some inflammation).
He ran a lot of tests looking for different autoimmune diseases. Nothing showed up on any if those and to my knowledge he didn't run the ANA which I know is sometimes used to look at the overall autoimmune system. Again, I'm not a doctor so don't quote me on any of this! :-) The only things that showed up on my tests were anemia and extremely low Vitamin B12 levels. So, the plan is to first correct those issues and then see how I'm feeling. If I'm still not having a noticeable improvement, he wrote me prescriptions for the Mast Cell cocktail (Cromolyn, Pepcid, and Allegra). One thing at a time though.
I don't have Hyper POTS. Hyper POTS is the type of POTS that usually is associated with mast cell issues, but with my symptoms Dr. G. still isn't willing to rule out mast cell. I should mention that Hyper POTS has to do with the body releasing too much norepinephrine. Mast Cells are responsible for allergic reactions and for some reason there is a group of POTSies who have over active mast cells which creates fake allergic reactions. The third condition that seems to frequently go with this trio diagnosis, is Ehlers-Danlos Syndrome. EDS is a connective tissue disorder. There are many forms of EDS, but from what I've read it has to do with the body not producing collagen correctly. I have symptoms of this as well (hyper mobile joints and fragile skin that doesn't heal well).
Doctors haven't put together all of the pieces about why these conditions tend to go together. EDS and Mast Cell Activation Disorder make sense because mast cells are housed in connective tissues. EDS is genetic and I feel there is a link on my Mom's side of the family. There is a history of joint problems and other issues that I feel fit the bill! I'm not sure what happened with me to create this perfect storm of health issues, though! Maybe one day, doctors will put all these pieces together and be able to help more! For now, I feel like I've paved the way for my own little family. There is a 50% chance that EDS can be passed on so I pray that my girls don't have it! But, if they do, we now know what it is and they won't have to go through the years of tests, doctors visits, and tears that I have.
Thank you all again for all of the thoughts and prayers! It honestly means the world to me. I am beyond excited to fly home to the frozen tundra in the morning and see my beautiful babies! I'm also going to try my best to get back into my normal routine! I'll keep updating frequently to let you all know how I'm doing! I've been absolutely blown away by the response I've received from this little blog. I'm obviously not a writer, but I'm ecstatic that my story seems to be helping others! God is good! :-)
Amy
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