futurehope Posted March 8, 2012 Report Share Posted March 8, 2012 As I have frequented this forum for years, and the mast cell forum for a while, it occurred to me I might have MCAD (Mast Cell Activation Disorder).I wrote down all my different medical complaints and faxed them to Dr. Afrin, a doctor at MUSC who specializes in this, and he accepted me as a patient!Some people win the lottery and get excited. I get a good doctor and get really excited! This has been over 10 years, with myriad doctors looking at me like I'm a mental patient.I don't know where this is going to lead. I will see him April 30th and let you all know in case there is someone else out there who could benefit. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 8, 2012 Report Share Posted March 8, 2012 That is great!! You definitely have to keep us posted. Do you have to travel far to get there? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 8, 2012 Report Share Posted March 8, 2012 Some people win the lottery and get excited. I get a good doctor and get really excited! This has been over 10 years, with myriad doctors looking at me like I'm a mental patient. You're funny. Good luck with that appointment. Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 8, 2012 Author Report Share Posted March 8, 2012 I'm traveling by car from Baltimore, but I can do it. I just finished a driving vacation from Baltimore to Orlando FL, so I will do this, Lord willing.It's been a long time of continuous investigating for me, with many doctors looking at me like I'm a hypochondriac. Well, if you're life has been taken away from you and nobody seems to know the reason, you keep investigating and praying.I could have pursued this years ago, but for some reason, I thought "No, there's no way I have this. I do not go into anaphylactic shock."Apparently, not everyone does go into shock. Some people "leak" on a constant basis and this causes their POTS symptoms.I'll let you all know. Maybe, this will wind up being a dead end. But.......I'll never stop trying to help myself feel better. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 8, 2012 Report Share Posted March 8, 2012 I could have written your post! (Except for the Baltimore part). I totally get the part of never stopping to look for some kind of understanding of this health issue and some kind of help for it. Usually if I have a bad appt. with a doctor that I thought could help, I sit for a couple of months, then find the next one to go to. Eventually, someone has got to be the "one", right? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 8, 2012 Report Share Posted March 8, 2012 My son has an appointment with Dr Afrin on April 2nd. We will be driving 12 hours to see him. I had emailed him and then faxed him my son's records and he agreed that the mast cell issue should at least be ruled in or out. At this point I'm not sure how I want it to go..be diagnosed with MCAD/S or not. If medication for MCAS will help him, then sure but if it doesn't help him, we really don't need another diagnosis that medications aren't helping. My son currently has POTS and hasn't been able to attend school for the last 3 years (with the exception of 6 weeks). Christy Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 8, 2012 Author Report Share Posted March 8, 2012 Christy,I favor having Dr. Afrin review my medical history and ruling MCAD in or out. According to the people on the Mast Cell forum, on the right combination of meds, they can feel quite well. If something happens, they know what to do and who to ask.If you have this disorder, you need to know about it. How else would a doctor or surgeon be able to deal with me if they didn't know? That's my opinion.The Mast Cell forum I frequent is:http://mastcelldisorders.wallack.us/yabb/YaBB.pl Quote Link to comment Share on other sites More sharing options...
corina Posted March 8, 2012 Report Share Posted March 8, 2012 you go futurehope! i admire you for your perseverance, i hope things will work out for you! Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 8, 2012 Report Share Posted March 8, 2012 Futurehope,I agree it needs to be ruled in or out. I just don't know if I want him to be diagnosed with it or not. If the medications are helpful and we can get him back to school that would be great but if it turns out to be like his POTS, where medications aren't that helpful I hope he doesn't have it. Does that make sense? I guess I just don't want another diagnosis that medications don't help.Also, Dr Afrin told me many people with POTS are actually misdiagnosed, when they actually have MCAS.Christy Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted March 9, 2012 Report Share Posted March 9, 2012 Also, Dr Afrin told me many people with POTS are actually misdiagnosed, when they actually have MCAS.ChristyI think I might be one of those people i've been having POTS symptoms acutely for almost four years, but I've had two negative TTTs. The weird part is that those are the only times that I was not symptomatic...I have symptoms every time I stand. So I started trying to figure what was different about those particular times, and it was a scent-free environment, extremely cold, and I had been fasting. I realized that scents/chemicals, food/eating and even a moderate heat are my three biggest triggers, and that maybe it was those other things combined with standing that was actually the problem. I'm in the midst of trying to get diagnosed with MCAS right now....it would certainly explain the weird health problems I've had for the past 15 years . I'm also don't experience full-blown anaphylaxis, so I originally thought it didn't apply to me. Turns out most of symptoms actually do indicate anaphylaxis...who knew? Futurehope, I hope the appointment goes incredibly well for you! I look forward to hearing about what you learn from him! Quote Link to comment Share on other sites More sharing options...
targs66 Posted March 10, 2012 Report Share Posted March 10, 2012 Futurehope, please do keep us posted on your visit! I'm another person who suspects there may be some MCAD connection with my symptoms - when I heard the description of mild anaphylaxis, I thought "that's me..." Plus, in the past year or so, taking acrivastine (Benadryl allergy) during the day and diphenhydramine (the old Benadryl) at night has really, really helped (just today, my husband looked oddly at me and said "you're being productive -?" because I was out in the garden raking). I still have utterly intractable fatigue, and can only do about 1/2 of what a "normal" person can - but still, the anti-histamines have given me some improvement for the first time in years.Good luck with your appt.!!! Quote Link to comment Share on other sites More sharing options...
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