I saw Dr Afrin the same day Jared saw him, I thought he was wonderful he knew everything about  me when he walked in the door too see me. He had reviewed over 300 pages of different Dr's and hospital notes. HE did a lot of blood tests and urine tests on me I traveled from south florida too see him, as going in a airplane is not tough for me now. He diagnosed me with mcad, and it was confirmed in 3 of my blood tests my tryptase level was high normal. three of my blood tests came back high . I also have pots or what thought was pots dysautonomia although I have tested neg on two tilt tests and positive on one. I do not have any allergies that I can pinpoint . I have a lot of neuro issues, tremors headaches, I do have dermatographism pretty bad. Made a big heart in my skin the other day for my hubby LOL, at least I can laugh about that. the only problem with Dr. Afrin is he is far from where I live but he is so receptive too working with the hematologist I found here, but this hematologist wants me too get a bone marrow and Dr. afrin did not think I needed it, so I am in a delimma now . I am not medicated as of yet as I responded so bad too the two meds he recommened my other hematologist here in southfla wants too start me on allegra at only 30mg once a day and increase it slowly as I am so reactive too meds. OK but I did want too put in a good word about Dr. Afrin now I am new at this dx but I can tell yu he is the first Dr that really listened and came up with something that sounded probable as too my long suffering and weird symptoms.

Goldie,

I am with Lisa on this one; you have to make the decision.  I had a BMB done in November of last year that was inconclusive based on the size of the sample drawn and was in a position where my doctor and I felt like we really did not need to repeat the BMB for treatment as all of my symptoms pointed to SM; but I made the decision to find a hematologist / oncologist with an understanding of mast cell disorders at a University Hospital.

Lisa is so correct in pointing out that the BMB does so much more than just giving a conclusive Mast Cell diagnosis; but I also understand your quandary.  Ultimately your goal is to FEEL better; but if you are up to the BMB it is an advantage to have a baseline for future testings.

As an example; before I ever knew anything about SM I had blood pressure issues that I spent time in and out of Dr.'s office and specialists trying to figure out for almost two years; at age 28 I had a Chief of Cardiology for a large hospital talk me into a nuclear stress test(which we had to jump through some hoops with my insurance company to cover); the key point that she discussed with me was even if it came back normal (which it did) that I would have a baseline for doctors to work off of in the future should I continue to have or develop additional issues.  In my situation hind sight was 20/20 because as I have learned about SM and spent almost the last year on a regiment of medicines; my blood pressure issues have faded.  But I have an advantage if something with my heart does go wrong because by repeating the test Dr.'s can see a map of significant changes.

So back to the BMB; I ultimately had it repeated and compliments of Dr. Akin communicating via email after agreeing to review my slides he was able to provide me with a plethora of information and an invitation to reach out to him anytime.

As for the actual procedure; Lisa is right there as well, there are so many other things more painful in the world.  I was knocked out for my first one but conscious for my second; and the whole procedure literally lasted about 10 minutes or so...  I truthfully believe you have to make a decision based on your own thoughts and concerns but I have to tell you that the BMB ended up being one of the best decisions I have made in my adventure in "Mast Cell World" and if there is ever a need or reason to do another that could lend toward additional benefit I would not hesitate.

I wish you well in your journey and hope you will keep everyone posted.


~Lucas

Goldie,

If you are needing any MCAD information just send me a PM with your email and I'll give you what I have.  

As to premedicating for exams and the like, also for your doctors, give them a copy of the REMA protocols we have here.  You should make a copy of these for your doctors and keep them for yourself as well.  They are specifically designed for us masto patients and they are really wonderful!

As to your hematologist asking for the BMB for these reasons, I fully agree!!   I know that there are those masto patients who are against it.  I am not one of them!  Your doctor is right in line with the believe of the authorities that although you may not be showing the MCs in your marrow as yet, with time, you most likely will.  Having a base line is valid therefore.   However, this much I will say - due to the fact that they are not yet certain as to the different forms of masto, in that they are beginning to see that there are different forms which  show different amount of progression of the disease, this may be something which is good to do now as a baseline, but due to the fact that your tryptase is still within normal ranges, much like mine, it may take MANY YEARS to show up in the bone marrow.  Thus, if you are following my thought processes you will see, your form of masto is so very slow growing that it may never really need to be followed within the marrow.  It may never present itself to being important enough to be concerned over.  Thankfully, this is what the low tryptase indicates.  Those with a higher tryptase seem to indicate that they have a more serious form of the disease and thus need to be more closely watched.  

But again, I do personally think a baseline is good and a wise move and it also gives a picture of what else is going on within your marrow.  We would never have guessed that I was low on iron stores for my CBCs are pretty and stable, thankfully!  However, there is damage being done and there is a need to keep an eye, and this is why I'll probably repeat my BMB in a few years from now.

Lisa



Lisa

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293571751