You can set the sort order of messages? Just click on the link in the date column. Your preferences will be remembered, so you don't have to do it again when you return.
I've found an allergist, here in Tucson, who called me this morning because of his interest in working with me (I had previously emailed him). He has "several"...
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Spring Amundsen
springeedingee
Oct 4, 2011 10:53 pm
I saw house last night and wondered about the aspirin thing. Is it legitimately a real test of masto? Spring Sent from my iPhone...
385
simmonr
simmonr...
Oct 4, 2011 11:16 pm
Robin; That is great, why don't u bring him the article written by Dr Afrin. I think Vanderbilt did a article on POTS and mast cell, those might be a good...
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sarah4_ep
Oct 4, 2011 11:34 pm
I agree - I'd bring the Vanderbilt article called "Hyperadrenergic POTS in Mast Cell Activation Disorders" as well as the article by Drs. Afrin, Molderings and...
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Robin 55
robinfrombamsi
Oct 5, 2011 4:55 pm
Spring - I couldn't find out online if taking 5 aspirins is a legitimate test and don't have an epi pen, yet, so am not up for trying it myself! :} My...
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Robin 55
robinfrombamsi
Oct 5, 2011 5:03 pm
Sarah, Thanks for the article specifics. House was the season premiere. I wanted to watch the entire show online, but the website I went to says it isn't...
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Robin 55
robinfrombamsi
Oct 5, 2011 5:08 pm
Linda, I sent you a reply and assume I messed up since it didn't post. Thank you for saving me hours of pondering on what I should bring. I appreciate your...
390
simmonr
simmonr...
Oct 5, 2011 5:19 pm
No problem, we need all the help we can get. Linda S ... From: Robin 55 <rbn1213@...> Subject: [theelephantproject] Re: New doctor advice needed To:...
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sarah4_ep
Oct 5, 2011 5:30 pm
Those articles are posted in the Files section of this thread. S...
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julie gregory
juliegee43
Oct 5, 2011 6:10 pm
Hi All- I realize that this is probably old news for some, but I had never heard it explained quite this way before. I recently "met" (online) another patient...
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Kerrilynn Lacerte
darkwaterfall82
Oct 5, 2011 7:01 pm
I don't have a diagnosis yet, but a few people have talked to me about Mast Cell Disorders and it sounds like it fits my symptoms, but so doesn't Mitochondrial...
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julie gregory
juliegee43
Oct 5, 2011 7:23 pm
Hi Kerrilynn- Welcome! Yes I get petichiaie under my eyes if I exercise too hard. I also have broken blood vessels all over, especially under my breasts- on...
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Daniel
drledford93
Oct 5, 2011 9:03 pm
Is EDS III classic or hypermobile? Can't remember. I don't have POTS but I do have dysautonomia. I wonder if that still pertains to what he's talking...
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sarah4_ep
Oct 5, 2011 9:17 pm
Dr. Afrin told me the same thing. When I mentioned this to Dr. Francomano she said she would bet "her life savings" that it was more complicated than this,...
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sarah4_ep
Oct 5, 2011 9:21 pm
Hi Kerrilynn, Nice to see you here. I also have terrible trouble with all-over itchiness and it has been helped a lot by MCAS meds. Recently when I have been...
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Daniel
drledford93
Oct 5, 2011 9:22 pm
I would tend to think EDS triggers MCAS/D. EDS seems to be at the root of a lot of conditions (Chiari, Occult Tethered Cord, "chronic fatigue",...
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julie gregory
juliegee43
Oct 5, 2011 9:29 pm
Yes, SOMETHING is genetic here. Too many people in my family (and yours!), Sarah are affected. Interestingly, Heather also saw Dr. Francomano. It's so...
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julie gregory
juliegee43
Oct 5, 2011 9:33 pm
Hi Daniel- I think (PLEASE correct me if I'm wrong) that EDS III is the hypermobile type. And, YES all forms of dysautonomia, not just POTS, are highly...
401
hhoover75
Oct 6, 2011 1:33 am
Hi everyone. I was the one that Julie referred to who saw Dr. Afrin recently. I didn't get a chance to really get in depth with him about his thoughts on the...
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julie gregory
juliegee43
Oct 6, 2011 2:11 am
Hi Heather! Nice to see you here :-) I also occasionally visit Deborah's Mast Cell Disorder Forum that you are referring to. I will pop over & check out that...
403
hhoover75
Oct 6, 2011 2:31 am
Yes, Lisa responded back and said Sarah's was the one she was referring to. Apparently, Dr. Wilson at the NIH is considering some research on this as well....
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sarah4_ep
Oct 6, 2011 2:49 am
Hi there, and welcome. I do hope that if I keep bugging the geneticists that eventually something might come of it - I haven't heard anything definitive...
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Spring Amundsen
springeedingee
Oct 6, 2011 4:05 am
EDS III is hypermobile. I believe classical is type 1. Sent from my iPhone...
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Spring Amundsen
springeedingee
Oct 6, 2011 4:13 am
Welcome heather! I enjoy dr Driscolls info. She is a bit too perky in the videos at times though! Idk how else to describe it. I wonder if she was a...
407
simmonr
simmonr...
Oct 6, 2011 12:40 pm
My dtg. also recently saw Dr Afrin and is a patient of Dr Francomano. Yes Dr Afrin believes that mast cell activation disease is causing the ehlers-danlos and...
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Chris Bell
c_bell24
Oct 6, 2011 10:10 pm
Hi Everyone, I'm fairly new to mast cell stuff and don't have an official diagnosis yet but am working on it. I have a few questions and am hoping someone here...
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Robin 55
robinfrombamsi
Oct 6, 2011 10:54 pm
Hi Christine. I promise you are not going crazy! I do not have an official mast cell disorder diagnosis, yet, so I don't feel fully qualified to answer your...
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sarah4_ep
Oct 6, 2011 11:22 pm
Hi Christine, Glad to see you here. I also had terrible air hunger and shortness of breath last year; these are better now but not totally resolved. However...
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Robin 55
robinfrombamsi
Oct 6, 2011 11:41 pm
Hi Sarah. Thanks for your input. I forgot about the tachycardia; it feels like the respiratory problems are putting an extra burden on my heart, since my...
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hhoover75
Oct 6, 2011 11:41 pm
I sent an email to Dr. Theo Theoharides at Tufts whose research is completely focused on mast cells. I asked him if he has done any research in the area of...
