Mast Cell Disorders Forum - Possible Mastocytosis???

dmcrun

Rookie

Offline

I Love YaBB 2!
Posts: 6

Possible Mastocytosis???
11/22/11 at 01:02:16

Hi
I am new here and was so glad to find this site, we can relate to so many of the stories on here. My husband actually has a diagnosis of ia right now. Our story begins about 2 years ago, my husband had always been very healthy-no surgeries or really any illness-one night we had a low country boil and he started breaking out in hives shortly afterward-we assumed it was shrimp and he took benadryl and we went to allergist next day-he ran allergy tests and stated it was not the shrimp test was normal except small reaction to cat. He advised him to take singuair and allegra and gave us epi pens. About a month later my husband broke out all over his body in severe hives and then face swelling- went to med stop gave him injections and advised us to go to dr. next day-we changed allergist and this one did a complete blood work up which showed high tryptase level-19-he ordered urine tests-came back negative-did more allergy testing-negative-added pepcid to his daily medicine-every week he has severe breakouts at least 2 or 3 times a week, he has had 5 anyphylactic episodes in 2 years-they seem to get more severe each time-dr. did determine aspirin was a trigger along with ibuprofen and all nsaids-his tryptase level continued to stay high so he ordered bone marrow biopsy-negative-he was hesitant to consider masto since urine and bm were both negative so gave him diagnosis of ia-we went to emory a week ago and saw another allergist-tryptase was 16.5-he left my husband on same meds and advised it could be possible masto-said we would really need to see a specialist-last night my husband had terrible headache so he took tylenol which he has been taking-he started breaking out all in his head and face-we just went on to med stop since last reaction was so severe-they gave him injection of steroid and kept him for 1 hour-he is back at work this morning-i don't know what he can take for headaches at this point! We live in Georgia and any suggestions would be greatly appreciated! This has really affected our daily lives.
Donna McAtee

Back to top

IP Logged

Joan

FORUM ADVISOR

Offline

Posts: 1502
Colorado

Re: Possible Mastocytosis???
Reply #1 - 11/22/11 at 19:20:19

Hi Donna,

Sounds like your husband has been suffering a lot and doesn't have a real diagnosis yet. His elevated tryptase is suggestive of SM, and there can be false negative BM biopsies. Still a mast cell disorder specialist can rule that in or out. If i were your husband, I'd try to see one either the Boston group at Brigham and Women's hospital or Dr. Afrin, who is in the southeast. There's contact information on this forum or you can Google them. If you can't find it, post again here and someone will give it to you.

I would also look at some of the medicine regimens posted on this forum and see if your husband is taking enough antihistamines, or post his meds and dosages, as well as how many times/day, here and people will comment.

As for pain, many mast cell patients take Tramadol successfully. It's prescription, and he might want to try it near the ER or in a doctor's office in case of a reaction.

He also might want to try the low histamine diet to see if that helps some of his symptoms. I like the one on the ICUS website. If that doesn't help, a traditional allergy elimination diet might.

Let us know how he's doing. Everyone here cares!

Back to top

Joan

IP Logged

dmcrun Rookie Offline I Love YaBB 2! Posts: 6	Re: Possible Mastocytosis??? Reply #2 - 11/23/11 at 03:02:35 Thank you very much Joan..
Back to top	IP Logged

hb36

Tutor

Offline

I Love YaBB 2!
Posts: 49

Re: Possible Mastocytosis???
Reply #3 - 11/23/11 at 07:27:20

Donna, Sorry your husband is having such a tough time. I live in Georgia as well and right now have a diagnosis of MCAS from Dr. Afrin at MUSC. Dr. Afrin wanted me to find a local hematologist to work with us. A few weeks ago I saw Dr. E Winton at Emory. He has some systemic masto patients and says he is not an expert on mast cell activation syndrome but I could tell he has read a lot of the research and he has spoken to many of the big masto researchers regarding MCAS. So I don't think Dr. Winton will be your answer but if it's not a lot of trouble to get to Atlanta, he might be a good stepping stone...you might want to ask him to look at the bmb because I think masto can be missed sometimes. If Dr. Winton can't help you, I think he would be very willing to help you get into Dr. Castells, Dr. Akin, Dr. Schwartz, NIH, etc. You could also easily get into Dr. Afrin at MUSC without Dr. Winton's referral. I think Dr. Afrin is excellent and is very responsive to his patients.

Hopefully, that will help you a little bit. Actually, you could also email Dr. Afrin and Dr. Lawrence Schwartz at VCU in Richmond and get their opinions. They were both responsive to me via email before I had a diagnosis and was trying to figure this out.

Hope that helps!
Heather

Back to top

IP Logged

dmcrun Rookie Offline I Love YaBB 2! Posts: 6	Re: Possible Mastocytosis??? Reply #4 - 11/23/11 at 08:08:00 Thank you Heather-could you send me a message with their email..That would be very helpful Donna
Back to top	IP Logged

dmcrun Rookie Offline I Love YaBB 2! Posts: 6	Re: Possible Mastocytosis??? Reply #5 - 11/23/11 at 09:56:36 O.K. I have a question-We have an appt with our local dr. dec.9th at which time we are seeking a referral-we live in georgia-we are considering Dr. Afrin which would be closer (south Carolina) or Dr. Akin (Mass.) Would go either place but just want to get others opinions on this. Thanks to all of you! Donna M.
Back to top	IP Logged

kimtg68 Guru Offline Posts: 545 Alabama	Re: Possible Mastocytosis??? Reply #6 - 11/23/11 at 16:56:46 Dmcrun, My opinion would be to see Akin if you can. Nothing personal against Afrin but Akin is more experienced. Thats just my sleepy about to go to sleep now two cents. Happy Thanksgiving! Kim
Back to top	IP Logged

Lisa

FORUM MODERATOR/ADVISOR

Offline

I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil

Re: Possible Mastocytosis???
Reply #7 - 11/24/11 at 08:14:31

Hi Donna!!

I'm sorry to hear about your husband's issues, and I'm sorry it's taking so long to find some answers. But I think we can help you gain some progress in your search.

Donna, your husband has a tryptase of 19. A perfectly normal person doesn't have a tryptase which goes above 1.0ng! 20ng is diagnostic for mastocytosis! I think you have right there enough of an indicator for mastocytosis or a mast cell disorder of some form to easily go see Dr. Akin or Dr. Castells in Boston. Yes, you could go see Dr. Afrin in South Carolina, but I think that if you can go to Boston, why not? Boston is a research center for mast cell disorders and they've got a fully equipped group of supportive doctors who can take your husband in hand and do a full workup if necessary.

I would suggest that you write to Dr. Akin or Dr. Castells telling them about your husband and asking them for their instructions as to how you can see them. Then I would follow those instructions to the letter and GO TO BOSTON!

That tryptase of 19ng is higher than my own and we have NO DOUBTS that I have a form of mast cell disorder. Your doctors may be in doubts, and that's normal, but mast cell disorder authorities know the disease and know that depending upon the form of the disorder, your tryptase will not be very elevated and yet this does not rule out masto. So, I very honestly think that you don't need to feel unsure of what direction to go in, this is masto. So, stop the running around and since you can go to Boston, don't keep going around in endless, frustrating circles with lesser doctors who are going to remain unsure. Go to the top - let them confirm it - then bring your confirmed case back to your local doctors. Your local doctors will thank you for taking the burden off of them in having allowed experts to do the hard work.

I hope this helps.

Lisa

Back to top

Don´t forget, there is so much more to life than being sick!

IP Logged

	Welcome, Guest. Please Login
	YaBB is sponsored by XIMinc!