Chronic Illness and Mast Cells, Thoughts

On Undiagnosed and Getting Worse

Today is a bad day.  A really bad day.  Every day has been a bad day since mid last week.  I’ve been to my PCP (primary care physician) for a steroid injection because the angioedema has been so severe.  The pressure in my head is near unbearable.  I can’t sleep.  If I try to lay down the pressure gets worse.  I believe I have some type of swelling in my head.  Yes, I said in my head as in affecting my brain.  The episodes typically happen when my angioedema is really severe.  It affects my vision.  Some times I lose my vision for a short period of time, at best my vision is so blurry I cannot see to read.  Extreme dizziness and nausea as well as spasms in my face, tongue, and jaw always ensue. with these episodes.  I also get muscle weakness and tremors in my hands and legs.  I have no idea what the underlying cause of all my symptoms is.  I know I have mast cell activation, but what is causing it?  How does one find help when you’ve done everything in your power and within your financial means that you know to do?  At what point do you accept your fate, or give up looking for help? At my appointment last week, I told my PCP that something really bad was going to happen to me with this swelling in my head. I explained how severe the pressure was, and how it is affecting my vision.  The steroid shot has helped with the angioedema, but it’s effect is wearing off.

In general, I have slowly been getting worse.  My allergist is not doing anything different to help me.  Just the same old meds and no new suggestions.  At my last appointment with my rheumatologist, he told me to think about Imuran.  I’m on Plaquenil and Prednisone already without a clearly defined diagnosis of my underlying illness, so I pressed for a diagnosis that would justify Imuran.  He responded with, “well if you pined me to the wall and insisted all I could say at this time is Mixed Connective Tissue Disease. 

So the are no real answers, just generalized diagnoses that I refer to as being in a vacuum.

I am so tired.  My body is exhausted.  It’s not getting what it needs, and I don’t know what that need is.  I just know that I need help.

 

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