Just a quick hello, and thank you Julie for setting this up. I hope we are joined here by others with our unique symptoms and health challenges. I know that...
2
sarah4_ep
Jun 13, 2011 3:44 pm
For anyone who hasn't seen this yet, this is the description of the research project we hope to get going: ...
3
Ronald
simmonr...
Jun 13, 2011 5:28 pm
Asthe local group leader, and a triage person for ehlers-danlos national I know alot of work goes into these projects, my big hope is that we spark research...
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julie gregory
juliegee43
Jun 13, 2011 11:59 pm
Just a quick "Hello" to all on both sides of the pond & beyond! This is an international group dedicated to supporting and studying the connection between...
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julie gregory
juliegee43
Jun 14, 2011 12:00 am
... Sarah- Thanks for sharing! You may also want to post this in the Links Section. Julie...
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mgc524
Jun 14, 2011 5:35 pm
I just wanted to let you all know that I have found you! Thanks for working to find us a place to meet. I will be back later....
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Fair Enough
drledford93
Jun 14, 2011 5:39 pm
Howdy all, Ok, so I think I may know some of you guys from other groups but I think I have the triad here (EDS, highly suspected PAF, suspected Masto). I...
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julie gregory
juliegee43
Jun 14, 2011 11:28 pm
Hi Daniel- Welcome! don't think we've "met" before. Your symptoms all sound very familiar to me. I've had or have all of them at one time or another :-( Mine...
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Daniel
drledford93
Jun 15, 2011 1:29 am
See my responses intermingled with your note below... ________________________________ From: julie gregory <juliegee@...> To:...
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sarah4_ep
Jun 15, 2011 5:37 pm
... Ok, I did also post this in the links section, but for some reason when I click on it in this message it opens, but not when I click on the link. Any idea...
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sarah4_ep
Jun 15, 2011 5:47 pm
... Hi Daniel, Sorry you are going through this. I just wanted to let you know that I have also experienced almost all the symptoms you list. I am excited to...
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Daniel
drledford93
Jun 15, 2011 5:54 pm
Sarah, As much as I'd like to say Dr F is looking at Masto pts, she isn't. I was simply going to ask her about it when I had a previously scheduled...
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sarah4_ep
Jun 15, 2011 6:05 pm
Dr. F is the doctor who diagnosed me too, and I have since pestered her on several occasions about how mast cell disease might fit into the EDS/HDCT-POTS link,...
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sarah4_ep
Jun 15, 2011 6:27 pm
Duh. Ok, I figured it out - when I pasted the link, http was there twice at the beginning. The same thing happened on your link to TMS Julie, you have to...
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Daniel
drledford93
Jun 15, 2011 6:45 pm
Great! That means she's at least open to the idea and I don't have to "educate" her...=) Daniel ________________________________ From: sarah4_ep...
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mgc0724
Jun 15, 2011 8:57 pm
Hey Julie... I got a new email address just for here as mgc524. Signed out, then could never sign in again. I don't know what happened! But it is embarrassing!...
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simmonr
simmonr...
Jun 15, 2011 10:29 pm
i will bring it up with her and the board at the convention in JULY. The POTS doc we see in Virgina who is the one who last summer said he has people with...
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Daniel
drledford93
Jun 15, 2011 10:51 pm
So, when did the mast cell disorder come into the "view" of Dr F and others, in being connected to EDS/other connective tissue disorders? I have had a lot of ...
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julie gregory
juliegee43
Jun 16, 2011 12:43 am
... No idea! The Link opens for me, Sarah- Thanks! Julie...
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julie gregory
juliegee43
Jun 16, 2011 12:47 am
... Sorry just saw this... I'll fix the TMS link....
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julie gregory
juliegee43
Jun 16, 2011 12:54 am
Hi Linda- If you feel comfortable sharing, I'd love to know WHO the doc in VA is. I'm impressed that he's "noticed" us :-) Julie...
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julie gregory
juliegee43
Jun 16, 2011 12:56 am
I'm sorry. This site and format is all new to me too. Not sure what happened, but glad you found your way back :-)...
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Daniel
drledford93
Jun 16, 2011 1:00 am
Hey Linda et al, When you say "...don't always test positive...", do you mean a negative Tryptase, a negative bone marrow biopsy, both, or something else?...
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julie gregory
juliegee43
Jun 16, 2011 1:15 am
It may have come to Dr. F's attention with Sarah...and maybe other patients. That would be after 2009. Because of the groundwork other patients (like Sarah)...
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mgc0724
Jun 16, 2011 1:22 am
Hi Daniel. I'm Gail. Here is why Tryptase may not be a good indicator: RESULTS: In support of our hypothesis, we find that alpha-tryptase deficiency affects...
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Daniel
drledford93
Jun 16, 2011 1:33 am
As I mentioned, I'm really grateful for the research and hard work you guys that went before me have done. I spoke with people that did this for us EDSers...
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Daniel
drledford93
Jun 16, 2011 1:37 am
So if it's suspected and there's a negative tryptase, is the bm biopsy the only way to go? I'd really like to bypass that step, if possible... =) I'm an RN ...
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mgc0724
Jun 16, 2011 1:44 am
If it were me, I would try to find someone to do a skin biopsy before I would do the gut. There are 3 areas especially rich in mast cells...the skin, the gut...
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Daniel
drledford93
Jun 16, 2011 2:00 am
Would the skin biopsy show systemic? From what I read, the bone marrow biopsy was the "gold standard" for systemic and the skin biopsy was for the cutaneous ...
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mgc0724
Jun 16, 2011 2:23 am
Some stuff is just really not clear cut. Some ppl with Cutaneous will have systemic symptoms. Some with no obvious skin problems will have too many mast cell...
