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Dr. DianaKeymaster
I found out I have this just a few days ago when I picked up some records! Apparently no one thought to tell me. ๐ I would love to hear anything you can share.
Wow, the same thing happened to me! I was wheezing at night and I don’t have asthma. I called my cardiologist asking if I could have this. She had me come in RIGHT AWAY and told me my last echo indicated that I had it! WHAT?! She said it was “mild”, but I was symptomatic, which got her attention. Are you on mast cell treatment? You may want to look into that. I’m about to write an article on this, and the left ventricular diastolic dysfunction was mentioned in The Driscoll Theory. Did you see it? You can download it here:
http://bit.ly/moYbIBI hope this helps to get you started! ๐
Dr. DianaKeymasterI am having a hard time finding information about mast cell disease, aside from a few sources that all say the same basic things and veterinary med sources!
Isn’t it sad when the animals get more attention than we do? ๐ I like tmsforacure.org — and they have a conference coming up! mastocytosis.ca/ has a Patient Experience Letter that is worth downloading and sharing with your doctors, too. It mentions the direct link to EDS and dysautonomia!
Dr. DianaKeymasterDeb… I am not aware of any research into Mast Cells and EDS. However, there has been a good bit done on Mast Cells and tissue remodeling. I expect it will take awhile to learn about all the ways Mast Cells are involved.
There is a geneticist in Canada who is exploring mast cells and EDS (he believes that POTS = mast cell disease! Wouldn’t that be a kick in the pants? ๐
You are way ahead of me — do you know if mast cell treatment treats alpha and beta tryptase issues?
Thanks so much!
๐July 31, 2011 at 6:39 pm in reply to: Thinning of Retina, EDS, and more pigmentation iris-POss TIa or Occular migraine #1365Dr. DianaKeymasterHi Mother1991, Here is a cool picture of thinning of the iris. See where the light is reflecting back through the iris to your left? It looks pinkish-orange because it is bouncing off of the orangish retina/choroid and you are seeing the light reflect back at you. You don’t have thinning of the iris!
http://www.ophthalmicphotography.info/website/slit lamp/atrophy.htmlJuly 31, 2011 at 6:33 pm in reply to: Thinning of Retina, EDS, and more pigmentation iris-POss TIa or Occular migraine #1364Dr. DianaKeymasterHi Mother1991,
Thank you for sending your iris pictures! Well, this is certainly no KF ring! What did your eye pigment look like before? Have you taken any prescription eye drops (or drops for eye lash growth, perhaps?). Frankly, Sweetie, this has me stumped! The only thing I came across was a potential link to multiple myeloma (worth mentioning to your docs), but that just doesn’t “feel” right. Two ‘zebras’ in the same person?
I will run this by some colleagues of mine, certainly. I wish I knew someone at UCLA, but alas, I don’t. Meanwhile, if a doc figures it out, will you let me know?
Thanks so much!
:)Dr. DDr. DianaKeymasterHi bearcat… I’ve been told I have Benign Joint Hypermobility as well, but no testing. Since I also have some vascular damage, I am now wondering if I may have the Vascular type EDS instead. Nice to ‘meet’ you.
Hi MCG,
Most EDS folks have vascular issues, even without having the vascular form of EDS. I know I do! But a good geneticist can rule that out for you (I <3 Dr. Clair Francomano in Baltimore).
Let us know, OK?
Big hug,
DianaDr. DianaKeymasterHi MGC, I have POTS! (as do my 2 kids). Tell me that you are trying treatment for mast cell disease. Please. If you haven’t caught word of that yet, please look at my theory (you can see the cover on the home page of this website. Click on it and you’ll get there). Some doctors are even thinking that mast cell disease = POTS.
We are all on treatment now. I “accidentally” started Zyrtec 7 years ago and knew it was helping but I didn’t know why. Now we take a double dose of Zyrtec and Zantac and are adding Gastrocrom today (by Rx). Holy smoking cow. This is DEFINITELY at least part of the problem! Please, please, please read, learn and ask your doc about mast cell treatment. And then will you let us know how you are doing?
Big hug,
DianaDr. DianaKeymasterHi Gail, My kids were tested (me next), and came out negative, but as you’ll learn, mast cell dz is a booger to diagnosis. We responded very well to treatment and are now going on prescription Gastrocrom. There is a big movement to change the criteria for diagnosis because more than half of us are missed through traditional testing. You may find the “Patient Experience Letter” at this site helpful: http://mastocytosis.ca/
Please let us know how your treatment goes, OK?
Big hug,
DianaDr. DianaKeymasterWell, after much comparison and after realizing that pictures online are usually on the dramatic side, it looks like my nails are “Terry’s nails”. I WAS able to get rid of the white spots with extra zinc, but the nails are still flattening.
Yes, I read that longitudinal ridging can come with age (thank you for reminding me about AGE, mother1991. hee-hee), but I was suspicious because it seemed like the ridging, spotting, flattening and red line came on simultaneously and suddenly. It seemed too coincidental. Here’s a link to a Terry’s nail that looks almost exactly like mine:
http://bit.ly/rc7c6e Scroll down to “Terry’s nails” (And be glad you don’t have some of the other ones you’ll see on the way down. Eeks.) :)DianaDr. DianaKeymasterHi BurningM,
I’m so sorry you are having to deal with glaucoma on top of everything else! I may have a suggestion for you.
If your allergies and sensitivities (and ocular dryness) are caused or exacerbated by mast cells (very common in us), if you treat the mast cells, you may be able to tolerate the drops.
Did you happen to read my theory which includes our tendency to have mast cell disease? Of course, please talk to your doctor first, but my kids and I went on a double dose of Zantac and Zyrtec to start. Wow — what a difference! We are starting prescription medication today (Gastrocrom). For my eyes (and my son’s), the dryness is PAINFUL dryness. Pataday (by Rx) is a mast cell stabilizer that may help calm your ocular reactions. I, again, double dose it (I’ve been called Dr Double Dose Diana. ha. Be sure to ask your doc). Your eye doc can likely give you a couple of free samples (give it at least 2 weeks for the full benefit, OK?) With some systemic and ocular mast cell treatment, you may be able to tolerate the preservative.
Also, with SLK (which is usually due to vernal conj — an allergic reaction — do you know if you have this?), your doc may be OK with you going on Alrex (a mild steroid that shouldn’t increase your ocular pressure). That should make you feel much better. Do you wear contact lenses?
Finally, drum roll please — please ask your doc if you can try Travatan Z — it is just like Travatan but with NO BAK! How great is that? If you seem to “react” to that, then your doc is right — you are likely getting the “normal” red eye, itching, soreness, etc from the drops. This reaction is NOT an allergic reaction. It is a side effect. In most people, it diminishes over time.
Sound like a plan?
๐ DianaDr. DianaKeymasterHi Deb, I’ll have some more info about the mast cell/EDS/POTS connection in Part 2 of my theory (did you read part 1, BTW?). I have not ruled out the possibility of a congenital mast cell disorder (our mast cells are not normal mast cells – they are shaped irregularly and rather than decrease in number with age, ours increase). But I think at this point we are all throwing out possibilities and mulling them over.
One important thing to note: more than half of the people with mast cell disorders respond beautifully to treatment, but the diagnostic tests are negative. It can be a booger to diagnose! Many, if not most of us with symptoms put our toes in the self-treatment mode and if we respond, then we jump into prescription medications (for example, in our family ALL of us had flaming cases of mast cell disease, but testing — except for bone marrow biopsy; haven’t done that yet — came out negative. We responded beautifully to OTC double dose Zantac/Zyrtec and now are going on prescription Gastrom. The downloadable ‘Patient Experience letter’ here is helpful: http://mastocytosis.ca
Interestingly, I got sick 8 years ago, and somehow stumbled on Zyrtec. When I was out and my insurance tried a substitute and it was not working, I remember calling the neurologist in a full-blown panic. I didn’t know why it helped, but without it I was non-functional. Unfortunately, I was not on a double dose, I had breakthrough episodes, so I thought the Zyrtec may have been a red herring and I STOPPED TAKING IT. Shoot me. We may be at the entry level of understanding this, but we are getting there!
Big hug, DianaJuly 31, 2011 at 12:24 pm in reply to: Thinning of Retina, EDS, and more pigmentation iris-POss TIa or Occular migraine #1355Dr. DianaKeymasterHi, the increased pigmentation of the iris does not mean thinning of the iris. when the iris thins, it becomes almost translucent, and docs can use a microscope to shine light behind it, the light bounces off of the retina, and looks almost red in the thin areas. I don’t believe the iris thinning (if you have any) is related to the retinal thinning. Are you very near-sighted? If so, you’ll want to watch for flashes of light and floaters. If you notice those, call your eye doc right away. That can mean a retinal tear or detachment. If you are highly nearsighted, they can give you laser treatment prophylactically. I’ve heard from some other EDS folks that their copper levels are off. And I’ve heard from one other that she has increased darkening of her pupillary rim also. I wish I could see it! I’m glad your KF ring is stable. The possible TIA’s and ocular migraines are VERY common with us. When I first became sick, they’d happen almost every day. You want to be sure that your doc (eye doc and general doc) is aware of your TIA’s because they can mean an impending stroke. With me, I knew it was my vessels constricting on and off — it was as if they forgot what to do! That went away over a couple of years, but I would have been majorly freaked out if I wasn’t a doc able to discern what the heck was going on. We are all different, though, so we have to be careful not to assume all of our symptoms are EDS-related and harmless. So, please stay in close contact with your docs, OK?
Dr. DianaKeymasterThanks. I went out and bought a speaker for my laptop just because I wasn’t able to hear anything on your vidoes, but now can try it.
MaryYikes. Am I speaking too softly? I usually listen to YouTubes with earphones which work well for even the softest voices. But please tell me to SPEAK UP if that’s the case, OK? If you have that great, immediate sense of relief when your hip goes back, I wouldn’t worry about no popping sound. It’s the relief that is worth CELEBRATING! ๐
Dr. DianaKeymasterOh, and mother 1991, Neptazane can sometimes be substituted for Diamox if you’re sensitive to sulfa drugs. It is still a sulpha derivative, but if you work closely with your doctor, you may be able to squeak by. Diamox (and Neptazane) are carbonic anhydrase inhibitors, not HCTZ drugs, so you may want to see if it could help you. Fingers crossed. ๐
Dr. DianaKeymasterCan a person have mast cell disease but biopsoies both from esophagus to stomach, small intestine and colon nad some large intestine be normal showing no inflaamatory process, and all tests for autoimmune all normal? There have been no skin biopsies performed.
Can Mast cell disease show up in genetic testing?Hi again — yes, you can have mast cell with negative biopsies — mast cells can hide in various tissues and organs. And no, I don’t believe there is a genetic test for MCAD. The docs like to get a bone marrow biopsy, because that is where mast cells are “born”. But even those results are not a guarantee either way. There is a big push to just TREAT it, because they think the current criteria is missing over half of us. Yikes.
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