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Just got results today-frustrated and scared (Read 2690 times)
deblevstern
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Just got results today-frustrated and scared
05/23/12 at 15:48:05
 
I am so frustrated and scared. I just got my results from my appt. with Dr. Afrin one month ago. My Heparin was 4x the upper limit of normal which he says is a strong indicator for MCAS. Because my colonoscopy biopsy blocks still never got there, he wants me to retest blood and urine in a month with him. He said he feels he needs another elevated marker, even another elevated Heparin will be fine to diagnose me, unless he can see increased mast cells if my biopsy blocks ever get there.

Has anyone been diagnosed with just elevated Heparin? My face is still stinging badly all day every day with some flushing, more so since trying H1 blockers, though H2 blockers work for controlling alot of other symptoms.  Thanks for any help and support. Debbie
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Anaphylaxing
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Re: Just got results today-frustrated and scared
Reply #1 - 05/23/12 at 18:34:55
 
Oh Deb, it's ok! If you think about it what he's telling you and what you've found out is just additional ammunition to get your symptoms under control. It doesn't change who you are or what you're going through. But I know it's tough to have abnormal results.

I believe there are people on here with elevated heparin only. I'm in the "might've had elevated heparin category" but I'm not sure the test was done properly.....either way I have all of the MCAS symptoms and need to treat them.

Are you on a mast cell stabilizer? I am on a whole bunch of meds and you might need more, less or different ones to help how you feel. It take A LOT of patience and changing things one thing at a time to sort things out. You are in THE BEST of hands and you will be receiving world class treatment. It is so good that they didn't find any big nasty horrible hematologic cancer or something. But no health issue is easy

While you're waiting you can start a symptom diary if you haven't with everything you eat touch smell and all of your symptoms to see if you notice any patterns. If you still have cycles, I find tracking them as well has helped reveal some patterns for me.

We are all rooting for you and you will be ok.

I definitely get flushing and face burning/stinging often but mostly when exposed to what I've now sorted out as triggers. It took me along time to let go of feeling "100% normal" I kept wanting that to happen instantly or magically after a new pill but I've realized I'm sick with something and it's going to take some figuring. Life might not ever be the same as it was but hopefully I can control things as much as I can and get as much enjoyment out of life as possible.

When I first had anaphylaxis I had constant symptoms for almost 6 months. It was only after that that I could start to pick out triggers. Before that, everything was firing all the time!


Hang in there! Thinking of you! Wink
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deblevstern
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Re: Just got results today-frustrated and scared
Reply #2 - 05/24/12 at 01:15:49
 
Thank you Anaphlaxing! Your support was really helpful.   I heard that some of the other docs don't even measure Heparin, so being that that is my only high marker, I get afraid I might have something even worse. Dr. Afrin says he will diagnose me with MCAS if I have another high Heparin when I come in late June, (that would make 2 high Heparins). Waiting another month is hard....Debbie
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Re: Just got results today-frustrated and scared
Reply #3 - 05/24/12 at 03:37:26
 
Debbie,

If the h2 blocker is working for you stick with it.  If the h1 blocker is causing the stinging in your face stop taking it or try another one, sometimes you have to keep trying different ones.  I take Allegra, zantac, cymbalta, LDN, benedryl, b12 shots weekly and I  still have a ton of symptoms.  Just taking the meds doesn't mean the symptoms are going to go totally away it just kind of eases the symptoms unfortunately at least for me anyway.  I don't think I ever had a heparin test over the years.  So I couldn't say if mine is high or not.  I just got Dr. Afrin's email and found out that my Aunt worked for a doc at MUSC for 30 yrs and knows about Dr. Afrin so I am going to email him questions about my SM and what my doc should be testing on a routine basis and find out if he knows anything new.  We have been going to Charleston, SC every summer for the past 12 yrs (this is the first yr we are not going) and now I find out about Dr. Afrin.  Jeesh, I can't believe my luck.  So hang in there.
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Re: Just got results today-frustrated and scared
Reply #4 - 05/24/12 at 04:45:36
 
I am wondering what you are scared about? Is it that you might have MCAS? I have IA (which I guess is also considered MCAS), and actually I consider myself lucky to have that over a different mast cell disease if I must have one at all. The scary part is figuring out the combo of meds that will control it and determining what your triggers are. After you know those things, it is easy and you can get on with your life.

Having MCAS is not the end of the world. It's nice to get a diagnosis and you just have to readjust your life to compensate for living with it. Now I know the hardest past is getting stable, and that goes back to finding the right meds. There are so many combinations of meds that you can try. Don't give up hope! Just keep trying. For burning skin feelings, singulaire is like a miracle medicine. You might want to try it. Also, are you sure that your stinging face started when you began H1 meds? Did you start that med just as the season/weather began to change? I wonder if that could cause your face to sting?Whenever we have seasonal changes, teh transition from one season to the next seems to cause mast cells to trigger more often and more severely. I have noticed an increase in my symptoms the past month or so. It will plateau out soon enough, but I know it is due to the seasonal changes right now....
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deblevstern
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Re: Singulair
Reply #5 - 05/25/12 at 12:37:42
 
Thanks Deborah,
I am more worried about the possibility that I might not have MCAS, but something worse...
Anyways, my doc. just prescribed Singulair 10 mg for me. May I ask you how long it took on it for the burning to stop? It says on the info. sheet that it does not work immediately....
Also, is it okay to stay on it for MCAS blood/urine testing. I have an appt. in 1 month.
Thanks so much.
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DeborahW, Founder
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Re: Just got results today-frustrated and scared
Reply #6 - 05/25/12 at 14:15:31
 
I respond instantly to meds, so for me the Singulair works within 10 minutes. I am probably just really lucky, though. Who knows. I used to describe the burning feeling as "feeling as if I was on fire under the top layer of my skin". I didn't have it just on my face, though, it was everywhere on me.

In regard to stopping meds for testing: NO. The mast cell specialists (Drs. Akin and Castells) tell us that we should not stop meds to test for mast cell disorders. It won't change your results.

I want to point out that there is no test available for MCAS. If you test positive to things, that is not an indicator of exclusion. MCAS patients tend to have normal tryptase, normal urine levels, normal everything. Everyone is different, so you will find some with elevated levels of something. However, a doctor who wants to diagnose you based on you testing positive to these things....really worries me as to his knowledge.

I know that you really would like to to get into see Dr. Akin or Castells. We have people on the forum who got an appointment with them simply by calling their office and telling them that their local doc suspects they have mast cell disease. Don't get scared off thinking that you must have a doctor referral. We have living proof on the forum of people who never had a doctor referral and who got an appointment.
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Re: Just got results today-frustrated and scared
Reply #7 - 05/26/12 at 13:17:45
 
@DeborahW,

I'm so glad you mentioned the seasonal changes. That is so true for me.  I definitely notice change of seasons. I thought I was particular that way.  My body notices high humidity as well.
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