NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › POTS, PCOS, Intracranial Hypertension, Suspected ED and mast cell issues. Can someone help me where to begin? › Reply To: POTS, PCOS, Intracranial Hypertension, Suspected ED and mast cell issues. Can someone help me where to begin?
As of this time the Dr’s who are treating me don’t know what POTS really is or that I have it. I am meeting much resisitence and feeling desperate at the lack of time that I have because I am getting worse at such a fast pace. I am in the hospital right now under cardiac observation but they don’t any to consult my nuero, my pressure is back up high and dc’d diamox the other day because I kept breaking out and I was feeling so sick. Prescribed lasiks but I have not taken it yet. The diomox had not really helped and the pressure built back up. I had an LP on Jan 4th and look like I need another. I’m having visual changes and am concerned for my eye sight. I have not been diagnosed with ED but I suspect i have it due to the way my body is slow to heal and the odd scars that have shown up after my last surgery. Took months for the incisions to heal, they kept splitting open. Not to mention that my chiro dr keeps taking about how hyper flexible my joints are as they keep popping and clicking so much. I’m having worse issues with my POTS, having a hard time keeping my temp regulated, out of breath a lot, suddenly Ian having serious gastric deltas when my water and food are taking hours and hours to go down, making me feel so I’ll or that I want to throw it back up. I’ve lost 30lbs since the new year…but since I’m obese they are not concerned actually of course they feel that, that’s why his happened. However I know that it was from trauma being rear ended severely at the end of auagusr. My neck snapped, and it hurt so bad since then. Not long after the tingling and numbness in limbs started and then everything else followed suit. I feel that I have had high pressure my whole life but it was not out of control like it is now. When I get home I am going to start myself on the Z’s. I’m trying to see a local PCP that has multiple dysautonomia patients so I won’t have to keep educating dr’s on what it is for them not to even be really sure it exists. I was reading your book again (having a hard time concentrating through pain) and it said hat if they can never get down to the issue that’s causing the csf fluid to keep rising that my body will keep having the same response correct? If diamox is not helping it and I’m degrading so fast I’m just not sure what to do. Also meeting so much resistance from doctors that it’s heatbreaking. I’m being treated as almost like I’m non compliment or something when im trying to just advocate for myself. Also waiting on the results from my lupus anticoagulant since my dad has lupus. They have not done and MRv or a positional MRI , things that I feel should be done to rule out things. I have also had pain along my jugular vein but people are ingnoring what I’m saying. I bring up mast cell but again they don’t take me seriously. It’s also suggested in your book that LP’s are not good but my pressure is so high I don’t know what else to do, my eyes are starting to bulge. I get a spinal migraine from when they did it last time too so that concerns me. I still have th pots but i don’t know if it’s non neuropathic or not. Although recently my pots symptoms as with everything else have been amplified. Sorry if I am repeating myself it’s 3:30 am and I’m so tired but can’t sleep and keep reading your book to try to grasp everything so I can try to help myself. Thank you so so much for your reply and all the research you have done.