Hi IsItMCAD,

In my experience I have been told by my mast cell specialists that a bone marrow biopsy in NOT necessary unless you have had a tryptase level done and it is above 20 (or consistently above 20 as it can be elevated when we react).  Or, the other possibility for needing a BMB would be if your c-kit is positive.  The c-kit is a genetic test to determine if you have a certain gene mutation.  But it is NOT a standard test for MCAD......a bone marrow biopsy tells if there is or is not an increase in mast cells.  As MCAD patients, we do not have an increase in cells, we have hypersensitive mast cells.

The histamine test is one of the tests that a MCAD specialist would order.

I have two suggestions.  I have a feeling that Dr. Afrin would contact your local doctor (if your doctor requests him to do so) and tell him which tests would need to be ordered for a "normal" mast cell work-up.  Do you think your doctor at home that would do this for you?  It does NOT have to be a hematologist or an allergist..it can be a PCP.  Dr. Afrin works with my PCP and it works really well.  Is that an option for you?

The second option I would consider is contacting a doctor by the name of Dr. Terry W. Chin.  His name has been brought up several times on the NORD website and he is very well thought of.  He is located at Millers Children's Hospital in Long Beach, CA.  He is an allergist who specializes in masto and anaphylaxis.  I would contact his office and at least find out if he sees MCAD patients.  Although he is a pediatric allergist, he WILL work with adults too.  I can find out more on NORD if you would like me to...just let me know.

As far as the Benadryl and your comment about not doing well on it......  Can you explain more?  What happens when you take it?  Have you tried different forms of the medication....and/or different brands.  Sometimes there is something in a certain tablet or gel cap or liquid that is an ingredient that could be bothering you.  If you have tried all forms and it causes you trouble I would check with your doctor and see what he thinks.  Using extra allegra is exactly what you need to do!!  And it sounds like you are doing a good job of avoiding your triggers....this to me is the key for getting this disorder under control....and getting rest is critical as well.

You asked about the Cromolyn and Ketotifen.  Yes, I "had" side effects with both.  But I am super super sensitive to any and all meds.  I started my cromolyn with a couple drops in 16 oz. of water and only took a teaspoon once an hour.  It took me a few months to work up to 6-7 vials which I now take.  I do still get dizzy and tachy if I drink too much at once so I tend to sip it throughout the day.  I recently added Ketotifen and started the same way....I reacted to two drops in 16 oz. of water so backed up to one and stayed there for a few days and now I take 7 drops twice a day....that is a little over 1/2 mL/mg.  The Ketotifen is supposed to make you tired but in all honesty it makes me feel almost normal!  It is by far the better med of the two (if you can tolerate it) and much, much less expensive.

I really encourage  you to go back to your doctor and tell him/her that you are having a lot of trouble even getting into a specialist for help.  Ask him if he would be willing to write Dr. Afrin and go from there.  Or...check with Dr. Chin (sorry I don't have the contact no.)

Although a diagnosis is a good thing to have, IMO it doesn't 'solve' the problem we have...and that is THE TREATMENT. Much of what we experience as patients is to be our own best advocate and "teach" ourselves and our doctors what we can.  I am sure you research constantly. If you are comfortable, I would bring any materials you have with you to your local doctor.  They may not have an interest in learning about MCAD specifically but maybe they will at least read it and be willing to help you.  OK?

hope this helps....hugs, Lynda

p.s. Some doctors use heparin as a marker...it seems to be an important one for Dr. Afrin.  It isn't in the criteria list (I don't think anyway....someone correct me if I am wrong), but when Dr. Castells looked at my elevated markers, she verbally included it along with my other ones.