Should I fight for the Diamox? 
Posted: 03 November 2019 09:55 PM   [ Ignore ]  
Total Posts:  1
Joined  2019-11-03

Hi all,
Like Dr. Diana, I too went on a vacation, to Mexico, and developed severe POTS like symptoms a week after returning. They only lasted a month, but a couple months later I injured my forearm muscle working out, and it has been a downward spiral ever since. After dealing with forearm pain and weakness for 1 1/2 years, I was diagnosed with bilateral Thoracic Outlet Syndrome and raynauds. Around the same time, I went on vacation and walked A LOT. My calves swelled up, they were hard as a rock, and I could barely walk. I mentioned to vascular surgeon, and he said it was shin splints. That was Jan. 2018…and to this day, I still have extreme calf pain. I went through two surgeries for bilateral TOS. The surgeon told me when he went in to remove my rib, that all of my tissues were scar tissue, and my rib was “glued” to my lung by scar tissue. My inflammatory labs continue to come back normal, and I have been told by every doctor that I have fibromyalgia, and that’s the cause of the pain. It does not describe the inflammation, and my symptoms of Raynauds, extreme night sweats, and being able to positionally turn my hands and feet blue. The list could go on. I saw a “fibromyalgia specialist”, and she said that is not what we are dealing with. That this has to be hypermobility/EDS. I have done 6 weeks of PT, started the Zyrtec/Zantac, and feeling some relief. Their concern still, is that the only way I can avoid severe night sweats is by dehydrating myself. To me, it has to be a fluid/pressure problem causing autonomic nervous system dysfunction. I’ve tried to get the prescription from my pcp for Diamox, and she would not prescribe. I read in Dr. Diana’s book that if one has a genetic clotting disorder, which I do (Factor V), that they should be treated aggressively. My question for Dr. Diana, or others, is what aggressively means? I’m worried that I’m not being treated like I should. I think the “fibromyalgia specialist” that I see would prescribe if we knew what to do with the clotting disorder and Diamox. I’m 31 years old, and have been dealing with these mysterious symptoms for 3 1/2 years. Doctors have prescribed everything from gabapentin, antidepressants, prednisone, muscle relaxers, to even opioids, but asking for Diamox is too much. Frustrating. Any advice would be so appreciated! Thank you!

Posted: 06 November 2019 08:30 AM   [ Ignore ]   [ # 1 ]  
Total Posts:  1421
Joined  2011-04-19

Hi Elise, If you are concerned about clotting (I think that is smart!), a hematologist is likely the best doctor to help. Do you have a family history of clotting or bleeding? If so, I would appeal to them based on that family history. they can run a full thrombotic profile to see if you need treatment or at a high risk of clotting or bleeding. A D-dimer test can be run by your doctor to see how you are handling normal clotting. I hope it relieves some worries! smile


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese