SO sorry to anyone offended by my bawling rant about a particular doctor.  I don't see the post anymore and I'm guessing it's because I named a doctor.  I'm SORRY ABOUT THAT!!!  I totally just overlooked that and was in the heat of distress, sadness, and desperation when I typed it.  
I had been looking for a second opinion for where I'm at because I keep getting worse and a second opinion is always helpful to have.  I appreciate so much everyone willing to help me through that moment and I'm still learning.  I do have POTS/dysautonomia and I think that plays a large role in the MCAD stuff too.  I really don't know what else I could have and I think my doctors feel the same.  I don't get why I have tons of shortness of breath, a total physical activity intolerance, and intolerance to being around people & their chemicals/smells/fragrances/deodorants.  
AGAIN, FORGIVE ME for my rant.  Not angry...just incredibly disappointed and distraught at the time.  I really appreciate the private messages and writings of encouragement.

Forum policies prohibit the slamming of other members, non members, and doctors. We are known as an international forum where people can come seeking help, guidance, support, and friendship. It is fine to say that one is very disappointed with their doctor, but we cannot slander that doctor....Did this occur in that post? It is debatable and we do not want to risk losing our forum over legal issues.

I also demand a level of respect for each other and for the doctors. Kim, if someone wrote a post slamming you, I would remove it instantly. I watch out for everyone equally here; it doesn't matter if they have a MD or not.  Over the years I have not only removed a couple posts, but banned a few people from the forum. The reason being that they were causing great distress among others here or using the forum to advertise their business or group. I assure you that I do not remove a post easily. I first discuss it with a group or advisors as well as an attorney. Yes, I did say attorney. When people put things in writing, those of us running the forum must watch to protect it from any legal disputes.

In closing, the post of which we are speaking was written with sincerity and distress.  There was no evil intent and it was with sadness that I removed it. However, the security of the forum always takes priority, because without that we have no forum at all.

Hopefully this clears up your questions.

Jared,

Trust me when I say that there isn´t a single member here who has not felt EXACTLY what you have felt!   So many of us get absolutely DESPERATE for we all know, if the doctor can´t figure out what is wrong, then he can´t treat us and we get so exhausted by the beatings we take and scared by the frightening size of our reactions, and  upset at the loss of control and quality of life that we get angry and frustrated by the time we´re going on doctor #50 or so!!   I honestly don´t think that there´s a single one of us, men or women, who haven´t found themselves crying and literally SOBBING over the treatment we´ve received at times.  I also know that with each new doctor we set up an appointment with, shortly before our appointments we have to talk ourselves down saying, Nah, this one probably won´t be open or know a thing.   Yet, we´re all so stupid because even though we expect that doctor not to know a thing, we still go into their offices with our hopes up!   We´re so dumb sometimes!!


Jared, although I don´t know Dr. Akin personally, I have spoken with him a few times.  He´s an excellent doctor and an authority in masto.  In order for him to get that recognition, he had to master a whole lot of other diseases in the process.  His reputation is gained by the approval of other colleagues and peers for they are who are able to judge whether the man really "gets it".  Yet, I also have to say that he´s got an incredible reputation amongst his patients as well and if you ask anyone on the TMS site, they´ll also tell you what an incredibly compassionate man he is.  Just the fact that he set up a phone appointment with you is evidence of that.  

I very honestly feel that Dr. Akin wasn´t blowing you off, but giving you his honest opinion that you do have something extra going on there.  

Now, although this is what it seems he was saying, could he be wrong?   SURE!   Why?   Because by your not being in his office, with your exam results and allowing him to examine you and to have the benefit of the opinion of another colleague who knows masto, he really can't get an accurate reading of your case!  

Here, let me give you an example:   Dr. Castells has been aiding me with this monster case of mine.  I go through a very, very rare masto reaction called prolonged syncope.  This reaction has been studied only one and it's very likely that she's never seen it in action before.  I've checked amongst patients around the world and other authorities and NOBODY has seen anbody go through what I go through on a weekly basis!!   Well last year my cardiologist told me he wanted an EEG done while in syncope.  I asked her what she thought.  She said "YES! good idea!!  It could be epilepsy!"  So, I did better that my cardiologist asked and got the foremost Brazilian authority in epilepsy to investigate this theory.  My doctors had already done this!  Dr. Castells backed up my cardiologists request feeling it was good.  

I could have gotten bothered by both of these doctors for I'd already done a brain MRI and the EEG 2 years prior to this.  When I spoke with the neurologist, he is who asked for these two exams.   I didn't want to have to repeat what I'd already done before, but there is no way that my cardiologist, Dr. Castells or the neurologist were qualified to really able to determine that this was indeed this rare syncope without having an expert repeat these exams.  Only the neurologist was qualified to say it wasn't epilepsy, but then when I asked him, so is it Syncope, he said, it most certainly appears to be, Yes!   But, is he really qualified to say that?  Well, not really.   You see, it's so very, very , very rare, that we can only deduce that this is what is really is by ruling out EVERYTHING else!!  

It's been incredibly frustrating for me, Jared, because the majority of my doctors either don't have the resources to help me, or they don't feel qualified to do so and so this burden has been on my hands and it seems that the only one pushing for answers is ME!  There are times I want to absolutely EXPLODE with frustration over this because I'm the one who takes the beating and it seems like I can't get a single doctor to take me in hand and take over, the ball is always in my court.  

But I must be FAIR and try to put my feet into their shoes and recognize either their limitations or their inabilities and try to UNDERSTAND what they are up against as well.  This is only right.

Jared, masto is a very rare disease.  It may not be so rare as they used to think, but because of how rare it has been considered, very few doctors are researching it.  It has only been within the past 5 years perhaps that mast cells themselves have become the fashionable cell to study.  Before then, nobody could give a hoot!  Without that study, nobody has considered what the other forms are nor even what the disease really does to our bodies.  Our researchers, like Dr. Akin, are still stuck on trying to discover all the different forms and diagnose them!  I'll bet you anything that they'll love to move on to the other areas of study about masto like how it affects the cardiovascular system or the gastric system!  There's nothing about the neurological system and I'll bet you anything it's a great deal more affected than almost any other part, but nobody's even begun to stick their spike into the iceberg as far as that system goes!  

So, you really must try to understand that Dr. Akin was most likely trying to say that you may have other issues besides the masto and they need investigating.  Once they've been investigated and you come up empty handed, then yes, without a doubt those issues do belong to masto without a doubt.!!

I hope this helps you.

Lisa

GRR! How frustrating. I had written a response on this topic and posted it only to get an error. I really should remember to copy before I hit 'post'. Anyway.....

Deborah & Lisa,
Thanks for your reply on the mysterious disappearance of that post. I completely understand and respect your decision to remove it and thank you for your diligent monitoring and protection you offer which could protect our butts when we get emotional or disappointed. This has been an eye opener to me. I know there may have been times when I was so upset that I never even considered the ramifications of what I may have said and whether I mentioned a particular doctor's name or not. Although a few years of experience has definitely taught me that in 'most' cases the doctors really weren't to blame.
So again, thank you very much for all that you ladies do from creating this forum (Deborah), educating so many on this rare and complex disease, supporting so many during emotionally upsetting times, and through all this still having the good common sense to protect us all, patients and doctors alike.

Kim