Hello,
I’ve been diagnosed with MCAD
My rash seems to overall be worse and I really don’t know what to be expecting…nor can I get my head around what MCAD and the mast cells in particular do..
he’s familiar with the angioplasty of the brain as a treatment, etc so I’m very comfortable with his knowledge and manner. But the pain I’m in now is absolutely unbearable and getting worse each day (the headache being the worst) and my coping skills just aren’t keeping up – and neither is my pain management regime.
Thanks in advance. I look forward to hearing your thoughts!
Hi Rae, I’m so sorry to hear about your issues. Ugh. You’re in good company, though and came to the right place! First, some clarification — do you know if you were diagnosed with MCAD or MCAS? This may be important. The “regular” dose of liquid Cromolyn is two vials (mixed in water) 4 times a day. Are you taking the full dose? If you can show us pics of the rash, there are a fair number of us here who may have some ideas. Did you shoot pics to your doctor? As far as the high ICP goes, were you able to try Diamox? I expected to stay on it for life, but after a few months, I hardly need any at all. This is GREAT, as we’ve been able to avoid shunts AND angioplasty. Research trials almost ready, but until then, some of our “special issues” are reversible when targeted properly. If you can use duct tape (Diamox, collars, mast cell meds, etc) for now, the trials will allow you to treat the underlying cause of the venous issues. Cool? Hang in, my friend. This is both a terrible and a great time to be involved in figuring all of this out. Big hug, Diana