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Mast Cell Activation

Blood Cancers & Disorders | Last Active: May 27 8:45am | Replies (122)

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@leilanis

@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.

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Replies to "@jpearo Are any of your doctors treating the breathing problems? Like with inhalers or steroids? Regardless..."

No my dr. Insists it is due to anxiety because all of my tests come out normal. I know it’s really happening so it’s frusterating. I made an apt with an immunologist recently so I’m hoping I can finally figure out what is going on. My wife has been dealing with me freaking out over health stuff for two years now. I’m so tired and frustrated. I am a little hopeful now because I feel like I’m on the right track. All it took was for me to take some medicine and I flushed and broke out in a rash. I’ve had a rash for months now. When I couldn’t breathe I started really researching. When I take Benadryl I feel like I can breathe. Hopefully I can finally get some answers and move on.