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dermatographia, anyone?
Posted: 11 August 2011 05:10 PM   [ Ignore ]   [ # 31 ]  
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em - 10 July 2011 09:13 PM

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!

Isn’t it sad when the animals get more attention than we do? smile 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!

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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: 14 August 2011 09:54 AM   [ Ignore ]   [ # 32 ]  
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Dr. Diana - 11 August 2011 05:10 PM
em - 10 July 2011 09:13 PM

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!

Isn’t it sad when the animals get more attention than we do? smile 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!

Thanks so much! I’m hoping to get some help with this since I’m itchy again despite my claritin and singulair. You’re awesome.

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Posted: 15 August 2011 09:40 PM   [ Ignore ]   [ # 33 ]  
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You are so welcome, Em! You’re awesomer… (is that a word?). smile

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Posted: 25 August 2011 08:06 AM   [ Ignore ]   [ # 34 ]  
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Aw, thanks!

This might be a silly question, but is the mast cell stuff related to other allergy stuff? It says on the site that you linked that asthma is also related to mast cells dysfunction. Would nasal allergies be too? I see sinus/lung infections listed on some of the most extensive lists of co-occuring problems with EDS, and I have asthma and bad allergies with lots and lots of respiratory infections in addition to everything else. When I saw that on the lists I wondered what the connection was.

As a side note, I’m amused that emotional upset, exertion, and stress are on the list of potential triggers on the mastocytosis page. So all those years I was right—I really am allergic to final exams, gym class, and unrequited love. tongue wink

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Posted: 03 September 2011 05:14 PM   [ Ignore ]   [ # 35 ]  
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em - 25 August 2011 08:06 AM

Aw, thanks!

This might be a silly question, but is the mast cell stuff related to other allergy stuff? It says on the site that you linked that asthma is also related to mast cells dysfunction. Would nasal allergies be too? I see sinus/lung infections listed on some of the most extensive lists of co-occuring problems with EDS, and I have asthma and bad allergies with lots and lots of respiratory infections in addition to everything else. When I saw that on the lists I wondered what the connection was.

As a side note, I’m amused that emotional upset, exertion, and stress are on the list of potential triggers on the mastocytosis page. So all those years I was right—I really am allergic to final exams, gym class, and unrequited love. tongue wink

HA! Em, that’s hysterical (but oh, so true!). Mast cells are sort of like “allergy cells from hell”. Sort of. They can cause allergy reactions (they release histamine), but they also release a lot of other very bad chemicals (cytokines, chemokines, heparin, etc) that can actually kill us. Cytokines can also help us heal, though, so if they are in check, all is well. In mast cell activation disorder (MCAD) or mastocytosis, the mast cells are abnormal and multiply almost like cancer. And they continue to get worse as we get older. That’s why we can plug along OK for a while, then BAM, down we go. And who is this crazy person who didn’t return your love?! Big hug,

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Posted: 03 September 2011 10:07 PM   [ Ignore ]   [ # 36 ]  
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I too have dermatographia. It was worse or the reaction was worse, when I was younger. Kind of one of those fun “tricks” I could do, like the finger tricks from EDS.

I also wanted to comment on the thyroid thread going here. I don’t have nodules, at least not that I am aware of (I do have those weird EDS nodules in my shins… oh what is the name for those? Escapes me now.). But, I am hypothyroid. My doctor treats 99% of his hypothyroid patients with Cytomel, which is just T3. Finds patients feel the best with this treatment.

Also, something some of you might want to check out, if you have high cholesterol and especially if it hasn’t responded to diet/exercise changes or even using cholesterol meds, you should be checked to see if you have the APOE gene mutation. My cholesterol has been horrible for years, but my doctor always thought it was “just” a sign of being ill and also, we had bigger fish to fry with my health that the cholesterol could wait. Well, he started testing patients that are very ill like myself for the APOE gene mutation and lo and behold, I have the mutation/defect (Mine is the 3/4 variety.. 4/4 is the worst, but 3/4 isn’t far behind). What this means in practical terms is that people with the APOE defect do not process fats appropriately…. we absorb them TOO well. This of course makes the risk for coronary problems and strokes higher and more recently has been linked to a greater prevalence of Alzheimer’s. The trick is to get those bad cholesterol numbers lower without going completely low/no fat, because our brains NEED fat.

Anyway, I would be very curious to hear if anyone else in this realm of illness (MCAD, POTS, CCSVI, EDS, etc.) also has the APOE defect. I am starting to think there is a whole group of genetic defects that might all go together (I also have the MTHFR defect).

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Posted: 18 September 2011 07:46 PM   [ Ignore ]   [ # 37 ]  
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dermatographia since i was about 15 yrs old (22 yrs ago),I remember the doc taking one look at what i could do with my skin…said that’s interesting & put me on atarax(hydroxizine) 4 x a day. my kids think it’s COOL, when they were little they would “write” on me. They are now showing signs…not raised yet like mine is, just red lines on their skin.

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Posted: 19 September 2011 03:08 PM   [ Ignore ]   [ # 38 ]  
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dawnrulost - 18 September 2011 07:46 PM

dermatographia since i was about 15 yrs old (22 yrs ago),I remember the doc taking one look at what i could do with my skin…said that’s interesting & put me on atarax(hydroxizine) 4 x a day. my kids think it’s COOL, when they were little they would “write” on me. They are now showing signs…not raised yet like mine is, just red lines on their skin.

Yup, that’s what that is! If you are symptomatic with POTS, DEFINITELY look into mast cell activation disorders, OK? There’s an article with the latest protocol on this site under “handouts” on the first page. It’s amazing how under- diagnosed this is!

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Posted: 26 September 2011 07:10 PM   [ Ignore ]   [ # 39 ]  
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Thanks Dr. Diana, too many years now I’ve been dealing with this!!!!!!!  I do have(what my doc thinks) is neurocardiogenic)** origin of autonomic dysfunction/ It just started 3 years ago…I just had 2 weeks ago,after years of complaining i might add, a heart monitor for 24 hrs. within minutes of being upright..my heart jumps to 120-140,& my local doc scheduled me for an appt. with Dr Eliot Wallack(philadelphia) 9 whole weeks after this was discovered NOT to be (figuratively) in my head.  BUT I also have “acquired Chiari” & small brain stem srynx**I truly believe i have multiple spinal fluid leaks..outrageous pressure builds in my head,swollen optic discs & a funny thing happens, either i feel a sudden burning pain in the middle of my back(breaking through) OR weird sensation almost like it’s behind top part of my throat…then my left nostril starts leaking clear fluid & within minutes the “pressure feeling” is no where like it was minutes before….I’ve told this to 3 different local docs & they look at me like i’m nuts!!!  Then the REAL fun begins….for days/sometimes weeks i can’t stand up for longer than a few mins. without the autonomic stuff… My question to you….How do we get these doctors to HEAR us???  & get them to believe that not EVERY patient that walks through their door is looking for attention,pain meds or needs anti-depressions drugs.  I just can’t take it anymore ...any advice would be appreciated!  Dawn

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Posted: 27 September 2011 10:56 PM   [ Ignore ]   [ # 40 ]  
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dawnrulost - 26 September 2011 07:10 PM

Thanks Dr. Diana, too many years now I’ve been dealing with this!!!!!!!  I do have(what my doc thinks) is neurocardiogenic)** origin of autonomic dysfunction/ It just started 3 years ago…I just had 2 weeks ago,after years of complaining i might add, a heart monitor for 24 hrs. within minutes of being upright..my heart jumps to 120-140,& my local doc scheduled me for an appt. with Dr Eliot Wallack(philadelphia) 9 whole weeks after this was discovered NOT to be (figuratively) in my head.  BUT I also have “acquired Chiari” & small brain stem srynx**I truly believe i have multiple spinal fluid leaks..outrageous pressure builds in my head,swollen optic discs & a funny thing happens, either i feel a sudden burning pain in the middle of my back(breaking through) OR weird sensation almost like it’s behind top part of my throat…then my left nostril starts leaking clear fluid & within minutes the “pressure feeling” is no where like it was minutes before….I’ve told this to 3 different local docs & they look at me like i’m nuts!!!  Then the REAL fun begins….for days/sometimes weeks i can’t stand up for longer than a few mins. without the autonomic stuff… My question to you….How do we get these doctors to HEAR us???  & get them to believe that not EVERY patient that walks through their door is looking for attention,pain meds or needs anti-depressions drugs.  I just can’t take it anymore ...any advice would be appreciated!  Dawn

Hi Dawn, You are among family here, as most of us can relate to what you are saying. Finding doctors is THE hardest part of dealing with this condition, I believe. You may be an “easier” case than most, though. smile Do you still have swollen optic discs, my friend? If so, you have a “get Diamox for free” card! Diamox is the standard treatment for “pseudo-tumor cerebri” (or we also call it “idiopathic intracranial hypertension”). If you stay on Diamox (talk to your doctor about sulpha allergies, taking baking soda capsules, etc) you should relieve many of your symptoms. Then please check into mast cell disorders (which I believe are one cause of our hydrocephalus and I betcha’ that helps with those POTS symptoms). Diamox flies in the face of traditional treatment (especially with orthostatic intolerance), but remember, we are treating the CAUSE of the problems, not the symptoms. It can be a tap dance for a month or so, but then things start to line up. In our family, we were all able to avoid brain shunts, cervical fusions and Chiari surgery through medical management. I pray the same happens for you. We are here if you need us! Meanwhile, we are all familiar with trying to find doctors who will listen… I think we scare many of them just a little bit (which I understand). Big hug, Diana

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Posted: 24 October 2011 04:01 PM   [ Ignore ]   [ # 41 ]  
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MGC - 04 July 2011 11:18 PM

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

YES!!! You got it!! You are now an honorary doctor, and WAY ahead of many doctor colleagues. smile Great job!

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Posted: 29 December 2011 09:19 PM   [ Ignore ]   [ # 42 ]  
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This is all very interesting to me… I’m new here!  Not sure if EDS is our family’s issue but we have been in search of a diagnosis for my nearly 11 yr old daughter for 5 years now.  My reasearch always seems to bring me back to EDS somehow.  She tested negative for Morquio A & B and is waiting on testing for SMD Kozlowski type and Brachiomalia by the International Skeletal Registry at Cedars-Sinai.  But we have been waiting since June for that and am so tired of all the waiting overall.  What’s interesting about this post is that her father had issues with ‘skin writing’ as a child and earlier this year suffered a ruptured aorta and lived to tell about it.  Chloe’s has been checked and seems to be fine so far but she did show an irregular heart beat.  Her dad has not had any genetic testing but they suggested he may have a connective tissue disorder; Marfans doesn’t seem to fit him or Chloe but my other daughter’s wing span is 2 inches longer than her height.  She is 13 and does not have any skeletal issues but does have some hypermobility of her joints and sensory issues.  Back to Chloe… it was 5 years ago that I took her for a back xray because she was complaining of back pain.  The Dr. called me in to show me the xray and said that she had platyspondyly and should be seen by a geneticist.  She has seen all the “ists” and we still don’t have a diagnosis.  Prior to the xray she had been in P.T. for hypotonia and gross motor issues and was in speech therapy as well.  She had and still has an ackward gate, esp when she runs.  She has mild scoliosis, kyphosis, lordosis, genua valga, short femoral necks, flat feet, myopia and hypermobility of her joints.  She has eczema and does not seem to have stretchy skin, perhaps a little in her neck.  She tires easily and gets out of breathe quickly.  Her inteligence is above average; she get’s A’s and few B’s and is in the gifted program in school.  However she is very forgetful and unorganized to the point that we are questioning ADHD. The past year or so her behavior has become increasingly challenging with a very low frustration tolerance.  For years she has had issues with excessive thirst and heat intolerance.  Lately she has been complaining of feeling dizzy and seems to be having hot flashes.

Bloodwork shows slightly low free T4 at .83 and normal TSH at 1.98 and endo is not concerned.  Thyroid anti-bodies are neg.  (Thyroid disease is rampant on my side of the family though.)  Other bloodwork shows low carnitine, low creatinine, low bilirubin, high bun/creatinine ratio, low globulin, high alb/glob ratio, high phosphorus and high MCHC. A mucopolysaccharides screen (MPS) showed a high level of 19.6 but with a normal pattern so her Dr. was not concerned.  Most else seems normal. Sorry this is so long…  do you see her fitting the EDS criteria enough to warrant testing?? If so please point me in the direction of anyone doing research as I’m a single parent and her insurance does not want to cover these genetic tests.  I’d be happy to email or fax labs, reports and photos if anyone is interested to see.  I did attach one photo from March ‘07 because it shows the rounding of her spine and how tired she gets.  Thank you for reading all this… so glad I found you!!  P.S.  I forgot to mention… both my girls are allergic to sulpha!

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Posted: 01 January 2012 04:11 PM   [ Ignore ]   [ # 43 ]  
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TMS just posted a new series of videos on their You Tube channel as well from the October convention. I haven’t had time to watch them yet but their info is ALWAYS like getting it straight from the horses’ mouths.

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Posted: 15 February 2012 03:13 PM   [ Ignore ]   [ # 44 ]  
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Yes, I have it quite severely now that I have finally been diagnosed as hypothyroid (TSH in range, but rock bottom T3 and low T4). Yet, I am on a grain of Armour thyroid and so far no improvement (but then T3 still low). I suspect I have been hypo for a while but have just had TSH testing. I have had symptoms since teens.

I used to have asthma (post-viral) and the only medication that cleared it was Zyrtec and upping magnesium. However, I slept too soundly and was often alone with small children so I eventually weaned off the Zyrtec only to have severe dermotographia as a side effect. Now it all makes sense!

Keep up the good work!

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Hypothroid, dysautonomia, dermatographia, high MCV

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Posted: 19 February 2012 06:27 PM   [ Ignore ]   [ # 45 ]  
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I don’t think I have it where I can actually “write” on my skin, but what do you think about this?  When my heart is pounding hard all over, my veins are distended, my hands are bright red and my fingers are swollen (I get these symptoms just from typing too long - like right now! or from massaging my dog), if you touch my red fingers, they will turn white where you touch, but then it disappears back to red after a few seconds.  Could this also be a histamine thing?

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