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HI my name is Jamie & I was finally diagnosed with EDS type 3 in 2011 after a very long journey and with many other diagnosis over the last 5yr. although I had many symptoms as a child and teenager the symptoms always came and went and the doctors never linked any of it together. I had t o do a lot of research myself and I’m still not fully satisfied. about 9mo ago I started to have severe dizzy spells, fainting, near fainting, vomiting, with the worst head and eye pressure that feels like its starting from the base of my skull my shoulders neck and arm are sore and go completely numb at night I wouldn’t whish on anyone. I couldn’t get any Dr. or specialist to help so I came across the Driscoll Theory and got my pcp to start me on the Diamox and zyrtec I was already on zantac for my Gerd. and I swear the next day all the headache and pressure the dizziness the fainting all gone. the neck and shoulder pain still present about a month ago the pressure slightly started to come back. my optometrist had me do a field analysis test and I failed it jan 2013 she repeated it was roughly 90 days later and it worse than the 1st one. She Said that I needed to see a neurologist or neuro-opthamologist bc she asap. I went to my neurologist and showed him my reports and he didn’t say much so I then went to my daughters opthamologist and he did a lot of testing he had a machine that they referred to as an eye MRI it showed that there is a delayed reaction between my eyes and brain and he told me that the Diamox is what has been saving my vision. he also said I have open angle glaucoma and he strongly believes I have pseudotumor cerebri and that I will have to be taken off the Diamox prior to a spinal tap bc the Diamox can give a false reading and then my neurologist says you cant diagnose pseudotumor cerebri without a spinal tap and the Diamox would interfere with the result.I am confused and don’t want any extra punctures in my spine so then I have to worry about a leak? I also have interstitial cystitis my bladder has been giving problem since 9 or 10yr old on and off now at age33 it spasms it feels like I have a bladder infection but I don’t it comes and goes. my GI track is awful after I eat my 1 meal (dinner) within 20 min Im freezing cold and my jaws chatter, I sweat at the wrong times. my bowels are getting worse by the day. Im starting to lean towards possible mcad. my symptoms are worse early afternoon through the rest of the day. the longer I sit the harder it is to get back up. prolong standing makes it harder to walk. I change day to day hour to hour and have a long way to go. I know they say pseudotumor cerebri is common in obese people I am not obese I weigh 137lb and I’m 5 ‘5 1/2″ I have lost 3/4 of an inch in height in the last 3/4yrs. Also I have very bad veins every time I have an mri with dye my vein bust and the dye goes straigt into my arm pooling making my arm the size of a baseball. I alos have orthostatic intolerance. My
pcp thinks I have ms but it hasn’t been confirmed. How do I find out if its a mast cell issue along with everything else?
Hi Jamie, and welcome! Wow, not much to address here (ha), but I’ll hit on some high points, OK? First, YEA that your PCP prescribed Diamox and ‘ZZtop’ drugs! 😉 If you have signs and symptoms of mast cell disorders (I must assume you have dermatographia?) and you respond to antihistamines (you did), then you have MCAS — UNLESS you have ‘true mastocytosis (which is pretty rare with us). Your PCP can check your serum tryptase levels (hopefully after you flush) to see. If in doubt, a mast cell specialist can rule it out, but again, it is pretty rare to have “true” mastocytosis. I spoke to a mast cell specialist on the phone, had my blood work done, and they didn’t even think I needed to come in. Yea! This is MY OPINION about spinal taps for us. I hear soooo often about poor healing, or reopening of the needle insertion site with us (even after a blood patch) that I won’t let the doctors do an LP on any of us. Personally, I think if we have every sign of high intracranial pressure, and the MRI has ruled out tumors, etc, but picks up signs of mild hydrocephalus (a partially empty sella, too much fluid in the subarachnoid space above the brain, etc) AND if we respond to Diamox, then we have hydrocephalus (or pseudotumor cerebri — same thing). It’s your call, my friend, but for me and my kids, I didn’t see the point. I am working on a patent for our interstitial cystitis right now. Hang in! 🙂