| Re: Blebs???? 19 yrs. old......input please
summerbreeze7,
I have been trying to get your attention here but you are posting topics everywhere. I will leave the same note here too.
I have Aggressive Systemic Mastocytosis. You know they need to do at least two of three tests to confirm Systemic Masto by some set of standards. Bone Marrow is one the other can be Histamine urine, or more typically Beta Tryptase. NOT TRYPTASE. There is a difference and some labs don’t know this. Anyway I hope all goes well for you and hopefully we will talk to you in the rare disease section. Please keep me posted.
Good luck
John
P.S. I'm sorry and re edited this. I see why after my original writing what the blep thing was about. Your son has them on his lungs and I am so sorry to here this. I'm not sure what it means but I would definitely mention it to your doctor if you test positive for Systemic Mastocytosis. There is not enough study or proof about this disease running in the family, but there are common Genetic C-KIT flaws always found and I think it’s worth mentioning. Please keep me posted.
Last edited by JohnDiV; 05-28-2005 at 09:43 PM.
| 
I posted a while back; I thought for sure someone would have replied. that's ok; because I know that what I posted is a rare type of situation. I just thought that this board would be the only way to get any info. at all. With the people that have posted regarding pneumothorax especially (i hope you are all feeling better) it just seems I can't get any one to comment?????? maybe someone will reply soon with some info. I will be going to the pulmonary specialist with my son soon (recently changed health care providers) so I'm sure they will want to to a complete work up. I will have my list 
I will post with what the Dr. says as far as progression of this bleb dx. etc... take care....mom in california 
Linear Mode
