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Sat, Feb 9 9:34pm · Mast Cell Activation in Blood Cancers & Disorders

The fact that you took Benadryl and could breathe means that and H1 antihistamine makes your symptoms better. And that is one of the criteria for MCAS—if you respond positively to antihistamine treatment then you should continue on that treatment regimen. I’m on high doses of H1 and H2 antihistamines and xolair but I still need steroids and inhalers to control the breathing issues. Even in the research protocols it includes that additional complications need to be addressed. I’m glad that Benadryl gives you some
relief!!!! That’s hope. So continue being hopeful — that’s what life is about. I will pray that you get answers and treatment soon.

Sat, Feb 9 8:16pm · Mast Cell Activation in Blood Cancers & Disorders

@jpearo Are any of your doctors treating the breathing problems? Like with inhalers or steroids? Regardless of a diagnosis, they should still be treating the symptoms, which they should do even if you have the diagnosis of MCAS. I was treated for “asthma” at the very start of my “not sure what is wrong with you” journey. Everyone thought it was asthma even though every pulmonary function test came back negative. I kinda always doubted that I asthma because my symptoms didn’t fit other than the fact I couldn’t breathe. I’m sorry your wife hates you because of your illness. I’m sure she doesn’t hate you, but she hates the illness and what it’s doing to you. I would urge your doctors to help manage your symptoms so you can Live day to day better as they try and sort out a “diagnosis”. I was very depressed (and still get episodes of major depression) in the beginning so I eventually gave in to taking anti-depressants and went to see a
Psychologist. It helped me sort out my feelings talking to someone. Is there anyone you trust that you can talk openly with? Maybe share what you’re going through with your wife so she can be more understanding of what you’re going through. Maybe you’ve already done that. It’s still hard though. I have had suicidal thoughts that come and go. When you don’t have control of your body, it’s a really tough, hard place to be and sometimes our relationships suffer because of it. I found it much better once I shared with my husband exactly what I was feeling and going through each day. I hope your dizziness gets better and you can think more clearly. I try to find something good in each day or do something that makes me feel like the old me.

Fri, Feb 8 10:33pm · Mast Cell Activation in Blood Cancers & Disorders

The good news, mast cell leukemia is very rare according to the research I’ve read. My breathing gets bad to the point that I am sitting in he ground trying to get a breath in during my tennis lessons. I’m good for a few months then I will get a “flare” and I would have to use my rescue inhaler 3-4 times in a one hour lesson. I haven’t let it stop me. However I just partially tore my Achilles’ tendon, most likely secondary to side effects of meds I’ve been on, like prednisone, Celebrex and Cipro. So it’s always one thing after another but I am not willing to let it stop me from doing things that were and are really a part of me — we are a really active family. I learned to snowboard two years ago even though cold often makes my breathing worse. I have doctors that understand that sports are a huge part of who I am and they help me stay as active as possible. I think it’s part of stubbornness (I like to call strong will 🙂 ) that keeps me going. Although sometimes i pay the price, but every athlete does. Ours is just diffferent.

Fri, Feb 8 3:26pm · Mast Cell Activation in Blood Cancers & Disorders

Hi @jpearo. I also have asthma like symptoms that have gotten progressively worse over 6 years. Then I started getting the flushing on the face and I’ve have reflux for years. All symptoms of MCAS, although tested negative for blood tryptase and histamine and prostaglandins in the 24 hour urine, probably because I take NSAIDS. Anyway, I just read a research article by researchers at Harvard on diagnosis and symptomology of MCAS. All the symptoms you describe were listed in the article. Go http://www.tmsforacure.org for more info. I lived the nightmare for years and continue to have breathing problems even though I have a diagnosis. We are working towards getting them under control so
I am hopeful that day will come. It sucks not being able to breathe especially since I am distance runner and tennis player. I keep going though, one day at a time. I have a great psychologist who has helped me through major depression episodes and continues to support me emotionally. An immunologist should be able to help you and I hope the one that sees you knows about MCAS, which they are finding is not that uncommon. But doctors need to rule out other diseases as the WHO criteria for MCAS is very specific. I don’t fit their criteria but I responded to the treatment. I hope you get some answers soon so you can begin living a better life again.

Tue, Feb 5 4:50pm · Difficult case, several diagnosis, no solution yet in Autoimmune Diseases

Hi. I can relate to your frustration of not having a diagnosis. It took 6 years for me to get one that seems to correct. I have fibromyalgia, really bad arthritis, and the latest: mast cell activation syndrome (MCAS). I have done a lot of research on MCAS and it’s treatment. My worse symptom is breathing (or not being able to). I don’t have any food allergies, but I have gastrointestinal reflux. No rashes, but itching more now. I am being seen by a pulmonary allergist and rheumatologist. I am on H1 and H2 antihistamines, prednisone, two inhalers with steroids in both and xolair. Still trying to get a handle on managing symptoms better but it’s slow going. http://www.tmsforacure.org has good information that might be helpful for you. Two main tests that is used to diagnose MCAS was negative for me. But that’s possible if they don’t do the tests during a flare. Anyway, I Live day to day with pain and breathing issues — those are the cards I am dealt. Hopefully someone will be able to figure out what is causing your symptoms or at least manage them. there is no cure for MCAS. I’d just be happy with being able to breathe without pain.

Mon, Feb 4 3:00am · Difficult case, several diagnosis, no solution yet in Autoimmune Diseases

I understand your fear of going to a new doctor after having one that knows you well. I’ve been working with my doctor from the very beginning, going through all the tests for MS, Churg-Strauss, Wegners, vasculitis, RA, etc. since 2012. I can’t imagine going to another doctor. One way to help your new doctor know about your medical history is to get a copy of your medical records, clinic notes,etc so he/she will know what treatments have worked and hasn’t in the past. Hope you can build a good relationship with your new doctor!

Thu, Jan 31 11:37am · Can I go from daily Morphine to pain control from CBD oil in Chronic Pain

Medicinal marijuana is not legal in all states. It’s fully legal in some states. Some allow medical some are fully legal, some are medical and decriminalized. I would google “is medical marijuana legal in “insert your state” to find out more info. There is a website that shows the legality by state and is updated very often as laws are changing quickly.

Thu, Jan 31 11:28am · Can I go from daily Morphine to pain control from CBD oil in Chronic Pain

I use CBD:THCA tincture (sublingual drops) instead of my opioid sometimes and it does relieve my pain. Usually lasts about 4-4.5 hours. So it does allow me to decrease my opioid use. I prefer drops because I know exactly how much I am taking. I also keep a journal of how much I take and how I feel so that I know which ratio of CBD and THC works best for me. I have had chronic pain for over 25 years in my spine, hips, and wrist/hands, headaches and my pain levels can go up to 7-8/10.