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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 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! 🙂
Hi Dr Diana, yes I have very dry dry skin. I had itchy legs and I got a spot the size of a nickle that is a darkened area it started on the top of my right foot about a year ago it would itch after a few months of itching it the size went from a circle and the a straight line went up my the front of my leg in total length its a straight line with a circle at the bottom and its probably about 3in or so. My Dr has no idea what it is. Once I started the zyrtec it hasnt itched once. Now my scalp has always been dry and flakey big flakes and itchy at times. I would itch it til my scalp was sore the zyrtec also stop my scalp from itching but the flakes are still there. My skin its extremely dry always has been I put expensive lotions on at least 2-3× a day but 30min later u can’t tell I can take my finger and write on myself. I used to get white dry circle patches on my upper arms haven’t had them since last summer although my son and youngest daughter stil get the dry white patchy circles on their face. Idk if this makes a difference or not somethings are harder to see on my skin, my mother is Caucasian and my father is African American. My children’s father is Caucasian so my oldest daughter and son have pale skin tone and me and my youngest daughter have medium skin tone. My scars used be white up until about a year ago now they are dark brown. I was told years ago I have dermatitis but haven’t been to a dermatologist in over 8yrs. My youngest sister had a bad out break of psoriasis at age 15 she was covered from head to toe. She is now 24 and has it not as severe but her scalp and elbows are still covered. I get outbreaks of flakey patches on my ears at times. My shoulders get these things that look like pimples but there not regular pimples its almost like they’re hard but have tiny blister over them they come and go. If I’m wearing even cotton pants that are lose they still leave lines or grooves in my skin that take about 10-20min to go away. What I’m confused on what is the difference between mcas and mcad? I don’t think I have full out mast cell but something associated with it. Who knows I could be way off track. I’m just asking for opinions so I can go in the right direction. Can interstital cystitis have any involment with the GI System? I’ve been told I have IBS by 1 dr and IBD from another. Non of the meds they have tried in 5yr has help with my Bowles or digestive track. I worked as a C.N.A for over 13 yrs I took care of many patients with colostomy bags and that’s one thing I want to avoid. As the days go on & I countlessly go up to 15+ days with no emptying and some days I go 3mo with nonstop diarrhea but the not goin at all is happening more and more how healthy can that be for a persons body! Does anyone know a name of a medication that might help my stomach or intestinal problems that I could suggest to my pcp just to see if its any relief? One more thing my son has a geographical tongue never had any issues until about 3wk ago he gets these circle shape inflammed areas all over his tongue that became painful I took pics to show his dr bc they come for a day or 2 then disappear then return again his pcp said he has no idea never seen anything like it so I asked him to switch he claritin to zyrtec just to see if it does something. He has been on it about 4-5days now and hasn’t had a flair up on his tongue at least not yet..
Thank you!
Jamie:)Also my oldest daughter and my sister have been diagnosed with Reynolds my son and oldest daughter both have POTS. My son had near fainting spells my daughter just started passing out after going on rides at a carnival she just got diagnosed 3wks ago. She gets migrains like I use to and she is very fatigue with no exercise tolerance like me. My oldest was also born at 28wks due to ruptured membranes 16years ago at that time I was told unknown cause. My son was 4wks early and my youngest daughter was 6 wks early. We all have hyperextened joints. My oldest does have a couple wide scars and what ever thescars are called that bubble up( keloid) ik I miss spelled that but she’s the only 1 with different scaring. She also has bladder problems. My son goes for a sleep study next month to check for sleep apnea.
Sorry I forgot to mention earlier that when I say I have more energy in the morning that is more so that I’m not as fatigued I do have symptoms from the time I wake up til the time I go to sleep. And before the diamox my eyes felt like they were giong to pop still nausea and bowel issues but my head didn’t start to feel heavy til about 1pm or so and I’m more stiff in the afternoon aposed to 1st thing in the morning. Early morning my eyes would feel as if I was look through gas like blurred. But I don’t get those symptoms since diamox and the 2 Z’s. The shoulder and neck pain comes and goes still its not no where close to as bad as it was previously. My mri I had a few weeks ago says there’s mucosal thickening seen involving the right maxillary sinus.. not sure what that means I’m not sick I don’t get sinus infection maybe 1x a yr. All of my children do but its not common for me. I do get pressure under my eyes when I was getting bad migranes and or eye pain but no infection that I was ever aware of. My neurologist says its normal but I’m not quite sure about that. Would it be an ENT that I would see? Today for the 1st time both sides of my face had felt tingly and numb just under both eyes. It went away after 30min or so.
OMG, Hon, this is a lot to address! I’ll hit the high points for you, OK? (After I finish my patents, we’ll make a lot of your other problems go away! 😉 MCAD is the old term for MCAS (it was a “disorder”, now it’s a “syndrome”). There is another condition that is abbreviated as MCAD, and I think the mast cell docs didn’t know that! Funny, huh? Geographic tongue: I know of one other patient who had that and it went away when he controlled histamine and avoided eating histamine foods (see my video on histamine foods). Out of everything you said, the one thing that concerns me is that your scars went from white to brown. I can’t diagnose over the internet, of course, and I can’t see your scars, but that is not normal, and I would recommend that you actively look for an answer — dermatology and endocrinology would be a good place to start). Gastroparesis/constipation is horrible, but I’ll have that answer for you soon, OK? We’ll peel back the layers one at a time. Our propensity for hydrocephalus (or pseudotumor cerebri) is pretty high, but again, I can’t tell you what to do (LP or not; shunt or not), but our hydrocephalus doesn’t appear to be related to the typical presentation of overweight females (my skinny son will attest to that!). Eye doctors usually use Diamox to treat it, but you’ll want your docs to give you a good once over to make sure nothing is getting missed. OK? After I finish these patents and studies, I’ll reactivate the consultancy so if you need more help, I can do that. Sound good? Hang in, my friend.
I swear last post Ha! My CO2 last month was 21.
Oh, Jrl_3327, that is too acidic for Diamox to work well. Please consider working with a urologist about becoming more alkaline. I have some suggestions in my video “Diamox and Alkalinity”. Hope it helps!
Thanks for some input! Greatly appreciated. . I do remember watching your video I believe backing soda was mentioned I will go back and rewatch it. Also I will keep you posted on how things are going. Your opinion means the world to me:)
Ha! Yes the back pain;) I just wanted to say that I did try baking soda last night and this morning and I will say just over night my stomach feels waaayyy better along with the mild pressure seems to be way better today idk if it works that fast but it seems that way with me.. So much help once again! :).I am making the choice to not have a LP my physiatrist agrees 100%. I myself have never been in agreement with any puncture in my much falling apart spine after trying epidural injections causing more pain 5yrs ago. So I am very skeptical of what procedures to do & not to do. I can’t wait to see what you have on the IC please keep me posted! I give u thumbs up for everything you are doing not only to help yourself but to help others also♥!!
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