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New to the forum - Sayin' HI and a little about me (Read 1874 times)
Traceyr
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New to the forum - Sayin' HI and a little about me
09/30/11 at 06:53:13
 
Hey guys, Im Tracey, 42 yr old female.   Its been a long 7 year journey to get a diagnosis of Ehlers Danlos Syndrome Type 3, POTS, Dsyautonomia, Reynauds, and CFS.  Im trying to understand since Mast Cell runs in the connective tissue arena if I have it or not.   If I do I believe its MCAD and that I may have triggers.  
I normally do NOT have itching, hives or rashes.  Mine presents more as fatigue, allergies, some digestive issues, and brain fog.   I even have light and noise sensitivity (which Im not sure that is related or not).

So far the cocktail Ive started recently is:
Allegra, Zantac, Zaditor, Nasalcrom, Singulair,Pataday, Asthma inhaler steriod - Alvesco.   I cant handle the Zrytec (makes me way too sleepy).  Im starting low on the Allegra and building up.  Zantac Im already up to 150 with hopes to go to 300.  My system due to POTS etc is sensitive to new meds so its a progression Smiley.   This is just my antihistamine regimen.   I have to take other meds for POTS/Dsyautonomia.

I contacted Dr Castells office this week and Im awaiting paperwork from her on which tests she may need.   It will be good to rule it in or out.   I really appreciate this forum and all of you sharing your experiences.  Very helpful.  Thank You.  Tracey
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« Last Edit: 09/30/11 at 09:41:36 by Traceyr »  
 
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Lisa
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Re: New to the forum - Sayin' HI and a little about me
Reply #1 - 09/30/11 at 16:10:11
 
Hi Tracey!!  Iīm really glad you are feeling so welcome here!  Iīm glad you found us!!

As to all of these issues, without a doubt the MC is the common denominator!!   Research hasnīt gotten this far yet, Tracey, but ti will and Im sure itīs going to prove that these are not individual diseases that have mast cell involvement, but that they are really different forms of the genetic defect of the mast cell itself and that depending upon the genetic defect, the form of the disease and itīs accompanying complications are different.

Iīm not the only one thinking this way which is why there is a new study being proposed to study patients with POTs, ED and masto!  

Lisa
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Donīt forget, there is so much more to life than being sick!
 
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hb36
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Re: New to the forum - Sayin' HI and a little about me
Reply #2 - 10/05/11 at 13:43:54
 
Lisa, can you tell us more about the study which is being proposed regarding EDSIII, POTS and Masto?  Who is steering that study and where and when?  

Dr. Afrin seems to agree with this line of thinking - that this trio is driven by an underlying problem with the mast cell.  What other doctors are thinking this?  

Thanks!  The number of us with these three diagnoses is growing daily.  It is exciting to think we are on the verge of some interesting developments!

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Lisa
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Re: New to the forum - Sayin' HI and a little about me
Reply #3 - 10/05/11 at 14:45:32
 
Well, I've got an email from Sarah Leach who is a member here.  She's a Canadian patient and has a geneticist who is interested in doing a study on this.  If you are interested in this, please PM me and I'll be more than happy to forward Sarah's email to you.

The others who are also considering this is Dr. Todd Wilson at the NIH and you can speak with Patricia who is in contact with Dr. Wilson.  she will give you Dr. Wilson's contact information.

Another group of doctors are some I'm working with, Dr. Christine Seidman and Dr. Craig Basson both of Harvard.  Their study is connected to herediary aortic aneurysms, something which my family has and they suspect masto to be the culprit due to other research coming out of Dr. Seidman's laboratory.  Give me a PM with your email and I'll give you Dr. Seidman's contact information.


Lisa



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Donīt forget, there is so much more to life than being sick!
 
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hb36
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Re: New to the forum - Sayin' HI and a little about me
Reply #4 - 10/05/11 at 14:59:07
 
Thanks Lisa!  I am on another forum with Sarah so I was aware of that study...just wanted to make sure I wasn't missing something  Smiley  I was actually reading about Dr. Wilson tonight...sounds like he is doing some interesting stuff.    

Thanks for sharing all of your knowledge with the rest of us!  It sounds like you have really been through a lot and I appreciate your willingness to share what you've learned as you really have done a lot of research!
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