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dermatographia, anyone?
Posted: 26 June 2011 09:57 PM   [ Ignore ]   [ # 16 ]  
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I don’t know if it’s PCOS. My gyn ruled that out.. but then that was pre-EDS dx.  I don’t have abnormal hair growth. I figured it was something wrong with the collagen in the functional cysts that didn’t allow them to rupture on schedule (when small).

Even 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.

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Posted: 27 June 2011 12:54 AM   [ Ignore ]   [ # 17 ]  
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Hi 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… smile

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 29 June 2011 02:42 PM   [ Ignore ]   [ # 18 ]  
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Absolutely! 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! smile

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Posted: 02 July 2011 07:44 PM   [ Ignore ]   [ # 19 ]  
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Hi 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. smile Keep up the laughs. We ALL benefit!
Big hug, smile

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 02 July 2011 07:52 PM   [ Ignore ]   [ # 20 ]  
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Hi 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.
smile

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 02 July 2011 07:58 PM   [ Ignore ]   [ # 21 ]  
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Birdbrained - 26 June 2011 09:57 PM

Even 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…

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 04 July 2011 11:18 PM   [ Ignore ]   [ # 22 ]  
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I know that high cholesterol and triglycerides are supposed to be common in EDS…

Is this why?

CONCLUSIONS:

By depleting pre-beta-HDL, mast cell tryptase may impair the initial step of reverse cholesterol transport and will then favor cellular accumulation of cholesterol during atherogenesis.

http://www.ncbi.nlm.nih.gov/pubmed/12482839

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Gail
Take good care of yourself!

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Posted: 09 July 2011 05:05 PM   [ Ignore ]   [ # 23 ]  
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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.smile

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Posted: 09 July 2011 05:08 PM   [ Ignore ]   [ # 24 ]  
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Hi MGC, Wow! What a find! I will be spending some time with this article FOR SURE. I agree with everyone here. There must be a connection between our hormones and our connective tissue disease. We all eventually suffer from “endocrinology” gone wild, and although my Dexa bone scans and cholesterol have always looked good in the past, now that I have mast cell disease extraordinaire, I wonder what kind of havoc it has caused on those conditions…

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Posted: 10 July 2011 06:34 PM   [ Ignore ]   [ # 25 ]  
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Hi. I’m new. Sorry this will be long! I don’t know if anyone is still reading this discussion, but it sure is interesting. I’m not diagnosed with EDS, have only been told by a geneticist that I may have something “similar to EDS”. But I am diagnosed with dermatographism, thyroid nodules which eventually made me hyperthyroid (was hypothyroid in past), allergies to lots of meds, chemicals and possibly some foods (definitely milk/lactose, also cocoa butter which is in chocolate-so sad!), Fibromyalgia, Erythromelalgia (the most painful), Raynaud’s, Glaucoma, Dry Eye Syndrome, GERD and IBS (may be gastroparesis), cutaneous vasculitis, frequent upper respiratory infections, heat and cold intolerance and lots of other issues.

The dermatographism was always present, even as a kid, but became a real problem one year when I had constant sinus infections, fungal or candida infections all over including my tongue (ugh), and was losing weight like crazy. That was all diagnosed as being caused by an inability to digest fats properly, leaky gut and chemical sensitivities.The allergist told me that mild dermographism was very commonplace, 30% of the population. Mine was “moderate” and is now mild (on antihistamines). Getting my hair cut used to cause welts all over my neck. And I always warn people taking blood or giving me injections to expect a wheal, so they don’t panic.

I’m from a tall family too, but I’m the short one at 5’6”. My sisters, mom and grandmother were all 4 inches taller. The men are really tall. One nephew is 6’6” and has Asperger’s in addition to unusual physical problems. A great niece who is only 15 is 6’2”.

Wish I could find an EDS specialist in Richmond or charlottesville VA. I am considering seeing a Mast Cell Disorder specialist here, but I’m nervous about not being taken seriously and I’m sensitive to Dr’s with that attitude.

Mary

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Posted: 10 July 2011 09:13 PM   [ Ignore ]   [ # 26 ]  
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This happens sometimes, but not always, to me. (And more on my stomach and chest than anywhere else.) It was really noticeable when I was dealing with chronic hives (for which no cause was ever found)—I would scratch my arm and swell up a bit. I take claritin and singulair now and just generally have less allergy stuff going on. (Though I was trying to exercise yesterday and got really itchy. So crossing fingers that it’s not starting up again.)

I 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!

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Posted: 11 July 2011 03:11 PM   [ Ignore ]   [ # 27 ]  
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Hormone link? Yes, indeedy. It will be in Part 2 of my theory. Meanwhile, try to stay on top of those mast cells! smile

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Posted: 11 July 2011 03:18 PM   [ Ignore ]   [ # 28 ]  
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Hi “Burning”—if a doc says you have something “like EDS” it usually means you have EDS, but they don’t feel qualified to diagnose it! Did you check out the videos on the types of EDS I made for this site? They may help.
Wow, your symptoms certainly align with mast cell disease, don’t you think? One problem with some centers for mast cell disease is they are using the old criteria for “mastocytosis” and are missing about half of us! Here’s a website with some great info. The “Patient Experience letter” is worth printing out for your docs: http://www.mastocytosis.ca/  I hope it helps!
Please keep us posted, and thee are a lot of wonderful folks on this site who can help you. Big hug,

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Posted: 11 July 2011 03:22 PM   [ Ignore ]   [ # 29 ]  
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em - 10 July 2011 09:13 PM

This happens sometimes, but not always, to me. (And more on my stomach and chest than anywhere else.) It was really noticeable when I was dealing with chronic hives (for which no cause was ever found)—I would scratch my arm and swell up a bit. I take claritin and singulair now and just generally have less allergy stuff going on. (Though I was trying to exercise yesterday and got really itchy. So crossing fingers that it’s not starting up again.)

I 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!

Check out: http://www.mastocytosis.ca/  Hope it helps!

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Posted: 11 July 2011 09:32 PM   [ Ignore ]   [ # 30 ]  
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Thanks Dr. Diana. That website does look like it has some very helpful info. I can’t see you videos with my laptop, or most other people’s videos. Not loud enough sound. May need to buy speakers or something. I see the neurologist this week, so I’ll see what he thinks of these possibilities. I appreciate the “hug”. Needed it.

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