This is a complex disorder that needs to be managed by a team which can include an allergist and gastroenterologist. Please note that Dr. Weinstock has an interest in this syndrome but owing to time schedule and other factors, will only be able to add a new MCAS patients a few at a time and the waiting list for Dr. Weinstock is long.
Major Diagnostic Criteria for MCAS:
- Classic symptoms of mast cell activation in ≥2 organ systems (skin, cardiovascular, nose, respiratory, GI, ocular, and/or history of anaphylaxis)
Minor Diagnostic Criteria for MCAS:
- Response to MC therapy
- Evidence of increased MC mediators
- Focal or disseminated increased MC in BM and/or GI tract (CD117-, tryptase-, and CD25-MC express CD2 and/or CD25)
- Spindle-shaped morphology in >25% of MC
- See educational PowerPoint presentations on MCAS
- POTS-MCAS-for-GIs.pptx (Download PowerPoint Presentation)
- POTS-MCAS-for-POTS-Conference.pptx (Download PowerPoint Presentation)
- POTS-MCAS-MBMC-Grand-Rounds.pptx (Download PowerPoint Presentation)
- IFM MCAS Florida 3-25-18.pptx (Download PowerPoint Presentation)
- POTS, MCAS and SIBO Portland - 2018 - June 3.pptx (Download PowerPoint Presentation)
- See list of MCAS symptoms and severity score form (Excel file download)
- See Dr. Weinstock's approach to diagnosis and treatment of MCAS (PDF download)
- Understanding Mast Cell Activation Disorder/Syndrome (MCAD/MCAS) -by Dr. Rosenthal
- Blood and urine testing for MCAS (PDF download)
- Hospital Blood and Urine Lab Requisition for MCAS (PDF download)
- Hospital Lab Requisition for MCAS (PDF download)
- Consent for Droxia (Hydroxyurea) for MCAS (PDF download)
- Consent for Gleevec (Imatinib) for MCAS (PDF download)
- Consent for IVIg for MCAS and POTS (PDF download)
- Consent for Xeljanz (Tofacitinib) for MCAS (PDF download)
Thank you for all of your help. It's a bittersweet event to get positive tests...in one way I'm thrilled because I felt like I've always known, but now it's real. The gift is that I don't have to do this alone anymore. I have your expertise and I don't have to be scared. Thank you so much for that.
GOOD NEWS....day 36 and no migraine. I'm a little slow but I'm at 3.5 LDN. My GI pain is gone, just some cramps once in a while, my asthma has really calmed down. I get some nausea but usually when I do too much, and right now I can't do much. I've been through a lot with surgery and this flare so I'm doing slow and steady. I have the chance of a lifetime and I'm gonna take it. I eat low histamine, really just meat and eggs sometimes. I'm doing protocol. Everything is slow and going in a positive direction. Each week is a bit better. What more could I ask for?? It's wonderful. Thank you so much and I'll see you soon!!
Starting to feel better! Brain fog not an issue anymore!
I am almost up to 4.5mg of LDN and my fatigue and itchy leg symptoms are SO. MUCH. BETTER. I can't even begin to describe the difference in my energy levels. I wanted to ask your thoughts on the SIBO symptoms of bloating and constipation. Will we be addressing those next? Is there a certain timeline for that in regard to the MCAS treatment?
Thank you so much for all your help. I know that cure is the goal but I'm very happy to feel manageable at the moment. I feel like I'm not actively dying anymore. Hopefully, this stays and gets better. Thanks so much!
For the most part I am better I had stopped taking all the medicine/supplements for a while and have starting having the bloating again so I am going to start back on the regimen for a while.
I have not had any attacks so that is great!!
I have been taking two ketotifen twice a day and it's helping a lot. Could you please write a script for twice the dose in one compounded capsule instead? It would save a lot of money.
Firstly, I would like to sincerely thank you for making the time to see me back in April. I have been to various different Doctors for years and not only has nobody been able to diagnose MCAS, I was often disappointed in their limited follow-up and how easy it was for them to simply avoid making any diagnosis via a referral elsewhere. Again, thank you so much for pointing me in the right direction.
Since the significant reduction of stress in my life starting January of this year, and the near elimination of any alcohol in my diet, I have been feeling much better. I take Allegra, Vitamin C, Vitamin D, and Vitamin B6 daily now, which also makes a difference. While I am feeling pretty good on the whole, I still don't feel great, like I did, say 6 years ago.
I just wanted to write you a quick message to let you know that I have noticed a dramatic differences in my POTS symptoms over the past couple of weeks (since starting the Cromolyn and Pyridostigmine). In regard to my energy levels and overall ability to "do" things (cleaning, cooking, playing with my toddler, etc.) I would say I really am starting to feel like my old self! I know we have tried a lot of different things, so I just wanted to pass along this good news to you. Thanks for being on my team and leading this journey back to health.
I have done really well overall, despite the excessively high mold count this year.
Started Xolair injections, I will update you after the first of the year on their effectiveness.
GI issues have been under control with the meds.
At this point, I feel you have more than kept your promise of diagnosing and treating me to improve my quality of life (I paraphrased a little).
THANK YOU FOR EVERYTHING
First of all, the whole MCAS medication clump seems to be helping, which is encouraging. I'm still having reactions regularly, but at a lower frequency than before. I was actually able to reintroduce limited amounts of egg into my diet (getting enough protein has been difficult, so I gave it a shot recently).
I'm sure you don't remember me; I'm 2 years out from last time seeing you. I just wanted to reach out and say thank you. I'm doing wonderful. I still take everything you recommended, I have gained all my weight back. I can have gluten just not too much. My heart is completely better and I can exercise again. I never feel like I'm going to pass out any more. I just can't thank you enough. I'm thankful every day.
I wanted to report that a few weeks into cromolyn I am feeling so much better. Much less gastro problems, more energy, less brain fog, and way less inflammation. Thanks for helping me to get on this! It's been a miracle after years of suffering. -K
Thanks so much for your help! My current mast cell cocktail is working very well, by the way and I am feeling and functioning much better these days. Thank you again for all you do!
I had a humming noise in my ears for a long time.. It stopped 2 weeks after I started the mast cell medicines. The burning smell stopped also.
DR WEINSTOCK WOW... so I was already starting to feel a bit better as I added Quercitin/D/C/Pepcid this week and changed my diet, but I started LDN 1mg in the morning on Thursday and HOLY SH*T I apologize for my language but I cannot freaking believe how much better I feel. I did not realize how bad my fatigue, muscle pain, and brain fog had gotten. I am also noticing the way some of my flare-ups are working although I cannot identify triggers yet. I wanted to thank you for putting me on this medication - oh my god. I forgot I could feel this good, Talk soon - thank you so much again for your life-changing efforts. I can't stop crying of happiness. Can't wait to keep improving!