Godsgal Posted October 7, 2011 Report Share Posted October 7, 2011 (edited) I'm absolutely heartbroken and bawling right now. Feel totally hopeless and thank God I have my God and family or I would just hate life right now. Dr....-----I just don't get it!!!!!!!!!!!!!!! I told him my symptoms, POTS/dysautonomia, debilitating sensitivity to chemicals/fragrance/people/food/life, high heart rate, low blood pressure, intolerance to any physical activity, have to use a wheelchair when I'm out, heat intolerance, my negative bone marrow biopsy, positive skin biopsy, high urine methylhistamine, and he just acted dumbfounded. Like he had never heard of someone having the problems I have and only having MCAD. He told me I was doing myself a disservice to believe that mast cell activation was my only issue. He didn't believe my sensitivities, high heart rate, low bp (constant) could be just caused by this. I have had EVERY work up by EVERY field of medicine there is. I'm just absolutely devastated.....I thought these people were the end all be all and he was literally dumb founded that I had so many troubles. :'( God I'm a mess. I begged him to talk to another docor about my case. He said in all his patients he didn't have anyone like me. He said to get my adrenals checked which I think have been checked at least 3 times already. Someone out there help me. I'm just bawling....I'm devastated. I wasn't expecting him to act like I was such a freak of medicine. I was expecting him to say he could help me. He told me he had no recommendations as to my medicines and I was already on the protocol. I take Singulair 10 twice a day, Midodrine 5 3 times a day, zyrtec 5 mg, 5mg , 10 mg, zantac 150 mg twice aday, just started ativan and that seems to be helping me. I can't believe that guy! I can't be the only one!!!! He made me feel like a freak of medicine. :'( I'm devastated.......please someone help me. Edited October 7, 2011 by corina Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 7, 2011 Report Share Posted October 7, 2011 I'm so sorry you are devestated right now, and I can understand. Maybe you really are worse than any patient he has dealt with, thus making him think there might be MORE going on than just mast cell issues. Yet, that still leaves you with no doctor to investigate further. I'm in the same boat. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted October 7, 2011 Report Share Posted October 7, 2011 It is good to know if a doctor can't help. It is best to move on. Find a new doctor, an integrative MD is good. Open minded, more of a scientist. Quote Link to comment Share on other sites More sharing options...
derekliz Posted October 7, 2011 Report Share Posted October 7, 2011 I just want to say I am sorry and hope that you can find someone who can help you. Looks like you will be making lots of phone calls. Hate getting upsetting news especially on a Friday. I truly am sorry. I wish for one that doctors would take our issues alittle more personally and treat us as if we were one of their loved ones and not just another number Quote Link to comment Share on other sites More sharing options...
lieze Posted October 7, 2011 Report Share Posted October 7, 2011 Well I think you probably have more than one thing going on that the MCAD isn't the only issue.I am much like your case.And my symptoms are always changing which leaves your head spinning.Like I'll have my throat closing up on me all day and then the next day no issue with that and I lose my balance instead.Who can keep up with that?And all of this is enough to provoke severe anxiety in the most grounded person on earth.I'm not saying I ever was but....Let anybody go through what you have been through and I doubt that they'd just describe it as a bad day.It's devastating and life altering but there are many fine people here that are surviving it.That is the good news!!!I know you said it upsets you to get on but of there is a way you can get support and feel uplifted here that would be awesome.It's what we need really. Some comfort, reassurance. To know that everything will be okay. It's what's been taken away is our safety/security.Reach out and let others lift you up.Saying a prayer for you right now. Quote Link to comment Share on other sites More sharing options...
lieze Posted October 7, 2011 Report Share Posted October 7, 2011 You will understand this....you know that shower cleaner stuff you spray in the shower to clean it that is mounted on the shower wall. I think it's Mr. Clean. My mom and dad use that and the other night I felt like it paralyzed me. My heart starting beating real odd and I lost control of my bladder. Wanna talk about a freak....who would even understand that? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 7, 2011 Report Share Posted October 7, 2011 I don't get it. Sounds like POTS symptoms with some symptoms specific to MCAD, which is what is talked about in the literature - and you have proof with the high methylhistamine. Maybe you were just better at describing how awful it is than his other patients?? Can you see the other Dr.? Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted October 7, 2011 Report Share Posted October 7, 2011 I just want to hug you, it is so hard to find a doctor who will work with us and help us try to feel better, so sorry you are going through this! Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 7, 2011 Report Share Posted October 7, 2011 (edited) Jared, honey-Do NOT be upset. NOTHING has changed. Lets try to figure out what the Dr. was trying to suggest...You do have mastocytosis per your skin biopsy. Duh. Yes, it is cutaneous- urticaria pigmentosa- BUT you are also exhibiting signs of mast cell activation and you have laboratory proof of that as well. Duh. And, best of all, you are being treated for & responding well to treatment.There's a lot of debate right now with the categorization of mast cell disease due in large part to the article recently written by Afrin, Molderings,etchttp://www.jhoonline...6-8722-4-10.pdfPrior to this, the gods deemed that you had one or the other disease: mastocytosis OR MCAD. This article categorizes things differently and suggests that one can have mastocytosis with and without mast cell activation disorder. This was novel when the article first came out, but is now being more broadly excepted, even most recently by The Mastocytosis Society.You belong to other forums with patients that have mast cell disorders. YOU are NOT a freak. Many of them are equally as disabled. I think Dr. Afrin (?) and others have noted that you might be low on H-1 at night and might be better served with 25mg of atarx or a very low dose of doxepin. I didn't improve until I added the doxepin and then, as I improved, replaced it with atarx. I forget WHY you haven't tried these...It was a phone visit, right? Not even in person? It's hard to take his observations at face value considering that he's never laid eyes on you, Jared. So many have deified this man & try to lead everyone into believing that he's "the god" of mastocytosis. I think we are doing our entire community a disservice by conferring that much power to one human being. My opinion.You clearly have mastocytosis with mast cell activation. You have symptoms very similar to other patients. You are improving with treatment. Keep all of that in mind. I know better days are ahead- as you hone your med regimen. It's taken me years to get my meds straight and I have to continually adjust them as my symptoms wax, wane, and change.If you mentioned that you were a patient of Dr. Afrin's, this might have turned into an ego battle at your expense If you want to tweak meds, look to Dr. Afrin. He's been so helpful so far. Do NOT let this one phone call change your life.Big Hugs-Julie Edited October 7, 2011 by corina Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 7, 2011 Report Share Posted October 7, 2011 Jared, One other thought, when my MCAD symptoms flare (like after surgery,etc.) I sometimes have to add florinef as well. For whatever reason, I sometimes can't get my BP high enough to function. I have gone through years where I was constantly on the verge of syncope. Talk with a doc, but remember to start low, like 1/4 to 1/2 of a 0.01 tablet. You MUST drink oodles of water and add oodles of salt to make the florinef work. But, it was a wonder drug for me. It boosted my blood volume and allowed me to LIVE. I usually tale it for less than a month. By then, my body figures out how to maintain the effect on it's own You must take your BP daily with it as it can elevate BP. That's how I know it's time to cut back or stop it. Just a thought. I know the midrodine helps, BUT when there's not enough blood volume to begin with- the vasoconstriction can be counterproductive. Hugs-Julie Quote Link to comment Share on other sites More sharing options...
bensman Posted October 7, 2011 Report Share Posted October 7, 2011 BIG HUGS Jared!!!It sounds like he acknowledges you have MCAD, he just doesn't feel it's the core problem. My gut reaction is that this is sign from God that you are going to receive your best treatment in S. Carolina. It may take some time to get your med regime figured out, but I think Dr. Afrin won't give up on you until you have it figured out. If you feel in your heart that MCAD is your root problem, then contact Dr. Afrin and keep faith that you will get better.Kate Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted October 7, 2011 Report Share Posted October 7, 2011 Sorry to hear this .. I've been there too though .. I suppose most of us have ... FWIW. I think dysautonomia is a mixed bag where allergies play a role but aren't the cause. Too many people I know have allergies but not dysautonomia ... I agree on looking for an integrative doctor. Mine can handle all of my symptoms and labs without getting flustered. She worked as a regular MD and then moved on to learn holistic treatments. I "think" (?) this sort of doctor is more capable of handling a variety of diagnosises, labs, etc than the doctors who don't like learning anything new.hope you feel better soon ... At least here you know we understand ... tc ... d Quote Link to comment Share on other sites More sharing options...
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