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.
Any thoughts? It seems that we would be more likely given the permeability of our cell walls, etc. due to both connective tissue disorders and mast cell...
138
Spring Amundsen
springeedingee
Jul 4, 2011 3:59 pm
Well I have pcos. Ovary cysts. And I have the pituitary microadenoma as we've discussed. I also had a parathyroid tumor. I was diagnosed with multiple...
139
mgc0724
Jul 5, 2011 3:43 am
Julie... I have not looked at cysts in general, but have looked to see if there is a connection between MCs and Fibrocystic Breast Disease, one of my...
140
Ronald
simmonr...
Jul 5, 2011 1:03 pm
Per the local doc's request we are going to Dr Afrin Aug. 10th via RV all the blood, bone marrow was negative for my 18 year old who can be triggered by any...
141
Daniel
drledford93
Jul 5, 2011 1:40 pm
I'm sorry to hear that the BMB was negative. That's probably what I'm facing as well. I hate these tests because 99% of them are negative (for me anyways)....
142
Debbie
chacomcqueen
Jul 6, 2011 4:41 am
Well, it's official. Got the biopsy results and the dx today. I do have mastocytosis, in addition to EDS3, a metabolic myopathy and at least two errors of...
143
julie gregory
juliegee43
Jul 6, 2011 2:02 pm
So happy you'll be seeing, Dr. Afrin, Linda. I am ceratin that he will be helpful. I have heard nothing but good reviews. Don't be discouraged by the negative...
144
julie gregory
juliegee43
Jul 6, 2011 2:04 pm
Thanks for the responses, guys. MEN1 is a new one to me. I assume you've had the genetic testing, Spring? Since I don't have hyperparathyroidism... I probably...
145
julie gregory
juliegee43
Jul 6, 2011 2:06 pm
Well, it seems odd to say "Congratulations!" but I know it's GREAT to have confirmation of what you've suspected. We will all be eager to hear everything you...
146
Spring Amundsen
springeedingee
Jul 6, 2011 2:16 pm
Julie I have had the genetic tests but they were negative. Part of my DES say that means I don't have the MEN1 some say I still do. I really don't know....
147
sarah4_ep
Jul 6, 2011 2:19 pm
Well, I am glad things are becoming more clear for you. Do you mind if I ask how the mastocytosis was diagnosed and if they have figured out or told you what...
148
sarah4_ep
Jul 6, 2011 2:28 pm
I haven't seen him as a patient, but have met him and he seemed very nice. I'm glad you are taking your daughter to see him and hope he has some answers for...
149
Daniel
drledford93
Jul 6, 2011 2:29 pm
Not to take this off subject but what is an "episode" that is triggered by an offensive smell/allergen/etc? Is it always anaphylaxis or is it something else?...
150
sarah4_ep
Jul 6, 2011 2:35 pm
I had trouble with ovarian cysts in my teens....
151
Debbie
chacomcqueen
Jul 6, 2011 3:17 pm
Thanks, Julie. It is nice to have an official dx but it really makes little if any difference as far as treatment, prognosis or physician awareness goes. My...
152
Daniel
drledford93
Jul 6, 2011 4:07 pm
Hi Deb, Could you please go further in explaining what your "triad" is? I have EDS, MC symptoms (gettin' a BMB Monday and have made it clear about Dr Afrin's ...
153
Debbie
chacomcqueen
Jul 6, 2011 4:28 pm
Hi, Daniel. The triad I was referring to is EDS/POTS/Masto. My kids (both grown) and I also have MCS. My seriously ill son and I each have a litany of other...
154
Daniel
drledford93
Jul 6, 2011 5:03 pm
Interesting, as I just got tested for POTS from a POTS specialist, but had previously been "diagnosed" with it by a non-specialist. I'll find something out in...
155
Debbie
chacomcqueen
Jul 6, 2011 5:16 pm
Hi, Sarah. It was diagnosed via biopsy of "ileal and colonic mucosa" using "an immunohistochemical stain for Mast Cell Tryptase". The gastro who did the...
156
Debbie
chacomcqueen
Jul 6, 2011 5:17 pm
If the BMB comes back negative, don't give up. Keep turning over rocks until you find the right one. :) Deb Mc...
157
sarah4_ep
Jul 6, 2011 7:31 pm
That's so frustrating, Deb. I am glad you are on top of things, but it shouldn't be this much work to get help. With these results though, hopefully a mast...
158
mgc0724
Jul 6, 2011 7:35 pm
Daniel... this is a difficult question because we can react to different triggers in different ways. My Tryptase is about 3x the upper limit of the normal...
159
drledford93@...
drledford93
Jul 6, 2011 7:38 pm
Well, just found out that the doc probably didn't order the stain Dr Afrin recommended. Is there a way around my doc? Maybe the radiologist could? Not sure...
160
julie gregory
juliegee43
Jul 6, 2011 7:49 pm
Deb- YES- please invite anyone who has the triad, thinks they have the triad, or wants to learn more about any of our 3 illnesses to join. I will do some...
161
julie gregory
juliegee43
Jul 6, 2011 7:57 pm
Hi Daniel- An "episode" for me, especially one set off by smell, usually involves my chest very quickly filling with mucus. It feels like a knife when I try to...
162
Debbie
chacomcqueen
Jul 6, 2011 8:48 pm
I doubt I'll be following up w/any out-of-state specialists, masto or EDS. I can't travel, nor afford anymore compounded meds. Besides, the treatment program...
163
Debbie
chacomcqueen
Jul 6, 2011 9:02 pm
Thanks! I'll send out invites w/a link here to a few friends when I get a chance. It's nice to be able to compare notes. I think we have a lot to learn from...
164
drledford93@...
drledford93
Jul 7, 2011 1:19 am
Not sure if this was sent... T-Mobile. America’s First Nationwide 4G Network ... From: "drledford93@..." <9OMK83ML+ta3b0w2T0anbU20N/rpkJ7veYN+kYwOSoY= ...
165
Daniel
drledford93
Jul 7, 2011 1:24 am
Thank you all for the explanations. I've had all of these things but can't point to a specific trigger at all. There's probably something but I can't figure...
166
Debbie
chacomcqueen
Jul 8, 2011 3:57 am
About 7 years ago, at the age of 46, I started have muscle/CT attacks. Over the course of time I was able to correlate these episodes, which eventually turned...
