Dear friends,

About 4 months ago I wrote my story on this website.  Many of you responded to my "cry" for help and started to walk me though the necessary steps I needed to take when I really didn't want to take them and was too sick to care.  I want to especially thank Lisa who contacted Dr. Afrin about taking another new patient.  And then she told me to "make an appointment".  

Since then:
1) I have leaned lots about mast cell disease and still know nothing (and what I do know still confuses me)...haaa  

2) I have learned a lot about what it means to have support from others who suffer from similar symptoms  

3) I have learned to continue to be positive  because of the many positive attitudes shown on this site..even when things literally get crazy!

4) I have learned that it is better to "Know" than to NOT KNOW!  

5) I have learned that when you have a lifetime history of illness suggesting mast cell disease, your stomach pain goes away 15 minutes after taking your first dose of famotidine, and you get your first "positive" mast cell mediator level in your diagnostic work-up (mine came in the form of a plasma heparin level that was 350 % higher than the "high normal") that YOU DO CARTWHEELS BECAUSE YOU KNOW YOU ARE NOT CRAZY AND THERE REALLY IS SOMETHING WRONG!!  

6)BUT........The most important thing I have learned is that if you think you might have a mast cell disease, it is CRITICALLY IMPORTANT to see a mast cell specialist because all of "our" best specialists in the world do NOT understand mast cell disorders!

I know I have a long way to go but I do belong on this website and I couldn't think of a better place to share my "hills and valleys".   (I think I may have also learned that I have become rather emotional right now!)  Sorry!!!

Sooooooooo......I'm just saying thank you from the bottom of my heart.....you have NO idea what you have done for so many!!!

Hugs to all, Lynda

Oh Lynda, now I understand your other post. Do you do cartwheels or cry. Glad you ended doing cartwheels. It is perplexing though isn't it. I get it and I'm sure MANY others here do as well. We don't WANT to be sick but have been for so long and turned away by doctor after doctor and not believed by others. Not to mention that you can't fight the enemy unless you know what that enemy is. I'm happy for you that you NOW have a positive test which means you can now begin the journey to getting better! CARTWHEELS for you Lynda!!!! Don't leave us though, I still want to hear how things are going as you go.

Congrats and thanks for all your posts and sharing that helps all of us and makes this forum the awesome place it is!

Kim

Lynda,

I'm sure it's a good feeling to finally have some type of answer!  I'm so glad you can now focus on getting better and stop wondering what's wrong with you.

Have a good weekend.

Kate

Thank you for the wonderful responses from each of you.  I appreciate them so much!  

I could "feel" your comment Deborah and had to smile.     I have taken Nexium for years...and for all practical purposes THAT expensive medicine should take care of ALL the stomach pain and heart burn and everything else, right?   I did the exact same thing you said, "Oh, I'll take this little Pepcid and "ya right" it won't help.  It took JUST 15 minutes and my pain (which was at a 10 on a 1-10 scale)  dropped down to almost 0!!

This is certainly a challenging disease.  There is soooooooooooo much to learn!

Kim, you hang in there....you will get answers from SC.  I know it!

Kate, I know you won't be sorry you "took a trip" as well.  

Patricia, your kind words were special. I hope your husband is having a good week!

Lisa, I did PM you when I wrote this....and I can never thank you enough.  

Hugs to all...........Lynda  

p.s. It seems that all of the rest of my specimens were "lost" on the way to a lab out west.  Then they were found again....but the ice had melted a bit...... they tried to run a couple of tests but they were not reliable as far as results.  I am glad they did the plasma heparin on site!

Question: Do I need to go off meds (H1 H2 meds) before I have the rest of the tests redone?

Don't rely entirely on my response. I'm usually very cautious in responding to questions on here since I'm still trying to learn so much. However, with that said, I believe in MOST cases you should not have to go off your antihistamines. I believe Afrin requested that because he does a skin scratch test on his patients which would require one to go off the antihistamines. Wait for some of our educated mentor's here to answer your question but I think I'm correct on this one. If nothing else, refer back to a simple email question to Afrin perhaps.

Good luck to you sweetie! I hope now that you have some answers that you can get on the right mix of meds to get to feeling SOOOO MUUUUCCCHHH better
Kim

Thank you Deborah.  You are correct in your answer to me "not to go off meds for retesting". I did write to Dr. Afrin and he also told me NOT to go off my meds.  He said If the tests come back normal it would be better to get retested on a "bad day" than to go off something that is helping me so much.

I am ONLY on Pepcid so far so it wouldn't be a lot to go off, but you are right, it doesn't make sense to "provoke" symptoms when we struggle to keep things as "normal" as possible.  

I am still working out the details of the H1 blockers.  It is very difficult to find one with inactive ingredients I can tolerate. I believe I did get this settled today with a pharmacy in MN. Now I just need a prescription because it has to be hand made and put into a capsule as a powder.  so hopefully they will ship fast and I can get 'better" coverage to lessen my symptoms ASAP!  

It is a full time job taking care of ourselves, isn't it?

Thanks again..........Lynda