I never wrote a blog post about my follow up visit at Mayo Clinic. I’ve told myself that it’s okay because I turned to instagram as my outlet instead, but in reality I wasn’t ready to discuss it. I was still a bit lost and confused, so I have never wrote this all out.
It has been almost eight months since I received my full diagnosis from Mayo Clinic. To start with I will just tell you all what my diagnosis from them is. My primary condition is Hyper-mobile Ehler Danlos Syndrome. I also have Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. Along with those I have antibodies indicating Hashimotos Thyroiditis, and then my previously diagnosed conditions of Endometriosis, Ovarian Cysts, and Irritable Bowl Syndrome.
I had the diagnosis of POTS when I went to Mayo Clinic. My reason for seeking additional testing was that I knew there was more to it. I knew that there was an underlying condition, and I needed someone to tell me what it was.
Anyways, about Mayo Clinic. My follow up appointment was with Dr. Goodman himself. He is a kind and brilliant man, and I am so thankful that I was placed with him as my doctor. He spoke to me like a human, and gave the the reality and details of my condition without scaring the hell out of me. He is realistic and logical, but gentle and compassionate. He has amazing bedside manner, which most of you know is often lost in Doctors of his level.
Upon diagnosis, he put me on medications. I started taking Mestinon for POTS. For MCAS I was put on Cromolyn Sodium, Allegra, and Pepcid. Over the course of the next few months of my MCAS journey the added Zyrtec, Zantac, Singulair, and Xyzal. (I also spray Flonase down my throat because I have a condition similar to MCAS in my esophagus called EoE, but that started prior to Mayo Clinic).
ANYWAYS all of that turned me into a zombie. My body was not responding to the Mast Cell protocol, and I was not myself, and could hardly function. I couldn’t drive a car of anything so I stopped (under the supervision of my PCP and other local doctors, this too will be explained int the next post).
As far as the medication for POTS, I also didn’t respond well to it. It gave me insane stomach cramps and I had to stop. There are more medications out there we can try though, so I am not hopeless.
For now, I am choosing to go down the alternative medicine path. That does not mean that I do not have all of the faith in the world in Mayo Clinic. I am forever grateful to them for taking me on, for running every Western Medicine test imaginable, and for getting me a full and accurate diagnosis. I don’t want to think of what my life would still be like without that diagnosis. So again I am forever grateful to them. I am just of the opinion of why not try the natural stuff first? The worst that can happen is that it doesn’t work and I go back on medication.
In the next post I will talk all about my alternative therapies, and what has worked for me, so stay tuned!