Hi I am 27 years old and have had health problems since age 17. Bloody Stools, Stomach Cramping, Low Blood Pressure, Abdominal Pain, Dizziness, Migraines, Vomiting, Flushing, Anemia, Blood Disorders, fainting spells, and a distended abdomen. I have even had 2 surgeries that have removed what they thought were several pockets of infection from inside my abdomen, but when they were biopsied the results came back negative for infection, and unknown. So when I was clincally diagnosed with systemic mastocytosis I was overjoyed to finally have a diagnosis, and when I started the antihistamines as well as cromolyn, my symptoms were dramatically decreased.
I now have a 2 year old daughter with the same problems, only worse, she has spells of vomiting, diarhea, and lapses unconsciousness that last for hours. Her stomach is extremely distended. She has been to top doctors at medical schools all over the country and nothing seemed to help, until we started cromolyn. Her belly is now normal sized for most of the day, and her diarhea has greatly decreased. She now has a clinical diagnosis for Systemic Mastocytosis, but her bone marrow biopsy came back normal. She still has a lot of health problems and I would really like to get her into the NiH or some other specialist. BUT I NEED A DIAGNOSIS, not just a clinical one. CAN ANYONE HELP ME!?!
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Need Help Getting Diagnosis Systemic Mastocytosis
- By livia
- Posted October 20, 2009 at 2:10 am · 4 replies
- In Getting a diagnosis
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- By NORDGeneticCounselor
- Posted October 20, 2009 at 8:54 am
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I suggest that you contact the following organization:
Mastocytosis Society, Inc.
P.O. Box 731
Brenham TX 77834
Phone #: 4138624556
800 #:
e-mail: info@tmsforacure.org
Home page: http://www.tmsforacure.org
- By Poetessa
- Posted October 20, 2009 at 4:49 pm
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What a fiasco for you! I am so sorry to hear that you are going through this no only for yourself but with your child too! It's not normally genetic, my sister has many strange symptoms but tested negative. All your symptoms I've been living with since childhood and have almost died too many times to count. I am currently in a protocol at NIH and they are wonderful, they obviously can't do much other than the usual stuff that we all are doing but they have been great. I can give you my doctor's name and perhaps if you contact him he might be able to point you in the right direction.
I have heard of this kind of thing several times on here where people have all the symptoms, the treatment works yet their tryptase is normal or bone marrow or both??? There must be some slightly different version of this illness that is still unknown. I truly feel for you.
I don't want to send my docs info publicly so if you wish I can send you a private note, I honestly don't know how much it will help but trying anything is better than nothing.
Wishing you all the best for both you and your little sweetie, my heart goes out to both of you!!
Healing Hugs!
- By SM_30
- Posted October 20, 2009 at 10:32 pm
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livia...this is a total shot in the dark...but I did see an episode of Mystery Diagnosis about pediatric Mastocytosis. The doctors name is Dr. John Grunow at The Children's Hospital at OU Medical Center in Oklahoma City, OK. I'm not sure where you're located geographically, but this doctor is supposedly nationally known and renowned.
- By Adwyer
- Posted October 21, 2009 at 9:54 am
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Hi,
There is a diagnosis website called http://www.isabelhealthcare.com/home/free_trial?idtop=free that I think you should type your symptoms into and attempt to find your own answer.
Just a thought,
Aleck
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