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Dr. DianaKeymaster
Hi Birdbrained, It sounds like you have all of the classic signs of mast cell disease. How wonderful to hear that you have been able to control yours through stress avoidance (family! too bad we can pick our own!) and some Zyrtec. That is WONDERFUL.:)
Dr. DianaKeymasterNo worries, Bearcat. You take care of YOU! For all listening? I love “Butyoudontlooksick dot com” Worth your time!
Dr. DianaKeymasterHi Bearcat, Wow, those ARE unnusual. Not even Dr. Google (ha) was of any help for me on this one. Does any one else know what this is? Perchance, did your dermatologist have an idea, or even do a biopsy to check? I assume these bumps don’t itch, right? Anyone?
Dr. DianaKeymasterEven tho my endo said there was absolutely no connection between the dermatographia and the thyroid function… I am still convinced. I had some remission of symptoms. Also, thyroid dysfunction does have impacts on the skin — dry, itchy skin.
I think you are right. I may have hit on a connection between dermatographia and some hormones… Interesting… I’ll write it up soon, maybe introduce it at the CCSVI conference in NY…
Dr. DianaKeymasterHi Birdbrained, I was just wondering how you were doing lately.
Oh, and I thought about Hashimoto’s. Is there a chance you have that? Your TSH levels would be either very high, or ironically, very low… It’s very common with EDS and can cause nodules.
๐Dr. DianaKeymasterHi Momcat7,
That has got to be the funniest (and heart wrenching) story I’ve ever heard! I love your sense of humor and you and I are certainly on the same page concerning humor. It helps any journey. I love that you adopted special needs pets, too. We have a dog with EDS — I kid you not. We call ourselves a “neurologically challenged” household. ๐ Keep up the laughs. We ALL benefit!
Big hug, ๐Dr. DianaKeymasterOh boy, have you opened up a great topic! YES! Vitamin D deficiency is very common in both EDS and MS, and heaven knows what other neurological conditions. In the MS world, patients take as much as 10,000 units per day. It took me a long time to get up to normal levels, but I finally did. Our son’s actually went a bit too high, and we had to back down (oops). Now that my fingernails are becoming funky (flattened, longitudinal ridging, some curling under, some white spots), I know there are certain vitamins/minerals I’m not absorbing well. Heaven knows I have more supplements in my body than the Sunday paper (ha), but absorption seems to be an issue. Because Vit. D is an anti-inflammatory, a lot of folks are jumping on the vitamin de jour (guilty!).
Dr. DianaKeymasterHi Bearcat,
Me? Impatient? ๐ Eager is the word I’m searching for. There actually seems to be a plethora of families out there with an amazing variety of neurological challenges! I am certainly interested in common links, and am especially focused on MS and EDS right now. But my mind is always working toward that next step! I’d be grateful for any group you could point me to! Thanks so much. ๐Dr. DianaKeymasterAbsolutely! We all seem to suffer with endocrinology gone wild, but we have the question of the chicken or the egg thing to answer. We thought EDS came first, but now that we know more about mast cells, and how they can change collagen, we’re not so sure. We are in an interesting time, scientifically speaking! ๐
Dr. DianaKeymasterHi Momcat7,
I’m happy to see the search function works on the forum!
Yes! Promethazine is great, and some people prefer it to Zantac. Sounds good!
๐Dr. DianaKeymasterHi Birdbrained, Well, it would make sense! A lot of us have the androgenic tendencies, too, as in polycystic ovarian conditions. I’m not a big believer in coincidences… ๐
Dr. DianaKeymasterHi Momcat7, We’ll look forward to meeting your new friends! I liked your description — your brain seemed “water-logged”. A lot of patients describe Diamox as their “brain drain”. How true. And we can’t get oxygenated, fresh, good stuff into our brains if we can’t get the old, crummy, garbage loaded junk out! ๐
Dr. DianaKeymasterHi Bearcat, Please take a copy of the theory with you to your autonomic docs, but I can tell you that they will laugh OUT LOUD when you mention Diamox. It goes against everything we’ve done to treat POTS in the past. We had always tried to increase our blood volume, and Diamox is a mild diuretic (not the major reason we use it — we use it to reduce the production of CSF which we can’t drain), but in the short run, it won’t help OI (orthostatic intolerance). The idea is to take the pressure off of the brain, allow it to float again, and reduce the pressure on the brainstem from the overly full cerebromedullary cisterns. We are hitting the source of the POTS, not the symptoms, with the hope that we can eliminate the POTS. But the treatment for mast cell disease is also a critical component for most of us. Some doctors even believe that ALL POTS is secondary to mast cell disease. I think it is a bit more complicated than that, but it is a component, certainly. Finally, the Diamox is a carbonic anhydrase inhibitor and as such, it will cause some acidity (think of it as a side effect). If you are too acidic (CO2 levels below 22), it stops working. So taking a PPI to reduce acidity only helps us. With mast cell disease we also tend to have WAY too much stomach acid, so the PPI (and/or Zantac) is doubly important. Does that make more sense? Thanks!
Dr. DianaKeymasterHi Momcat7 (do you have 7 kids?) ๐ The Zyrtec is the HUGE help, the Zantac is secondary in the help department. Please ask your doctor about substituting Neptazane (Methazolamide) for Diamox. I believe that will work for you, but PLEASE CHECK. You have a doc who ENCOURAGES you to bring info? Holy-smoking-cow is that doctor a keeper! And THANK YOU for trying to get those head circumferences for me. Smooch!
Dr. DianaKeymasterHi Momcat,
I believe that Neptazane (Methazolamide) is a good substitute for Diamox if you have a sulpha allergy, but PLEASE check with your doctor and/or pharmacist first, OK? These drugs are just SO similar, I wouldn’t be surprised if a pharmacist knows of some sensitivity for some sulpha sensitive patients… Please let me know!And it sounds like you all found the ‘secret sauce’ — Zyrtec! I can still have some breakthrough symptoms, but I worship on the Zyrtec altar twice a day…
Big hug, -
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