Monday, July 23, 2012

And so it begins...

I know this blog is for Turner Syndrome diagnosis, but I imagine that, like me, many TS women end up on the Assisted Reproduction route.  So I am including my IVF journey on this blog because a. it's good information and b. I really need an outlet!
After 3 weeks on the birth control pills (backward sounding, yes I know), I began my series of injections this past Saturday night.  Due to my AMH being so low, my RE has put me on the max dose for all of the stimulation drugs, which are in my case Lupron, Menopur, and Bravelle.  Here is what all my "equipment" looks like getting ready for my injections:
Luckily, the bottom 7 vials are combined into one injection, so although it looks like a lot it was only 2 injections in my abdomen.  Something I forgot about until I began my first injection for the first time... they had said "it will burn".  I didn't forget after that first time.  The Lupron burns slightly and causes a large rash over more than just the immediate area surrounding the injection and itched for quite awhile after.  The Menopur/Bravelle combo burns more than slightly and sometimes left an irritated place.  You would think it stops burning once you stop injecting, but no, it continues to burn somehow for about an hour post-injection.  I don't tell you all of this to complain, but to be honest and forthright about my experience.  The entire time I am dealing with the uncomfortable sides of IVF, I am reminding myself how blessed we are to even be able to have this chance. 
As the days go by, I find myself a little more emotional, a lot more bloated and having to go to the restroom more frequently.  Not to mention my poor tummy feels more and more sensitive.  Every other day I am going in for blood work and a vaginal ultrasound (as fun as it sounds!).  We are constantly praying for just the right amount of eggs and for those eggs to be healthy and TS free so that we have the best chance at a healthy baby before I run out of eggs.  I am learning more and more each day how little control I have over this entire process.  I have thought maybe that is what God is trying to teach me.
~T.

Tuesday, July 10, 2012

The Neurologist

  An appointment with a neurologist probably isn't on the typical list of doctors to see when diagnosed with TS, however I have already been seeing a neurologist for about a year now.  Since I was due for a follow-up with him, I decided to pose some questions.  I have found my neurologist to be one of the most intelligent people I have met and last year he was actually the one that discovered my Vitamin B-12 deficiency.  After initiating B-12 injections, I have found such a great relief to a lot of my joint pain (a random, unexpected, yet positive side effect to adding B-12).  Since he caught something, seemingly simple but apparently not since no other doctor did, I posed the question of testing for Celiac's disease and the MTHFR test, which will tell you if your body is able to break day folate/B vitamins appropriately.  This test is used for two reasons: 1) depression that has not been alleviated with anti-depressants because your body may not be synthesizing correctly and 2) recurrent miscarriages due to blood clotting issues.  Although he stated he appreciated my research and feels I will have to be an advocate for myself, he feels I need to go back to all the other doctors and provide this new diagnosis to them and allow them to run a full gamete of tests and not just pick and choose.  He said he is shocked to find out that I have TS because I am not the typical phenotype.  He looked at me in amazement and stated "I have never met anyone like you!"  Any other time that statement would have sounded seductive lol, but in this case I told him that was not necessarily a good thing.  He told me he had never met a mosaic TS before, but would definitely be doing some research for me.  At least I have him in my corner now. 
  My husband and I decided to call around to see if any of the pediatric TS clinics can recommend an endocrinologist that specializes in TS for adults. Apparently that is definitely a direction I need to head because some signs of pre-menopause can include.... joint pain!  So there may be a lot of my issues that can be fixed if we can see to get any hormonal issues straightened out.  I had never had a hormone check because... well I'm only 29, so who would have thought?
Just trying to navigate through all the craziness....

~T.