The Queen of Optimism

It’s becoming clear – if I am going to move closer to a diagnosis for my limited ability to walk, I will have to do what I do best. 

Research. 

Not my typical needle-in-a-haystack web searching.  A dedicated research effort.  Something I do daily for my employment.

My PCP, Dr. F. already mentioned that she will be doing some research on uncommon manifestations of Myasthenia Gravis and Multiple Sclerosis.  Now, it’s also up to me.  I know Dr. F. will research as much as she can but I feel like I need to help.  Do not confuse this with self-diagnosing or hypochondria.  I’m going to look for information, share it will my doctor, and go from there.  She’s the expert in medicine.  I’m a bit of an expert in research. 

I’m disappointed that after multiple calls to my PM&R doctor’s office, I received a call stating the doctor does not have any recommendations for who should do a muscle biopsy for me.  Dr. F. said she can send me to a general surgeon but would appreciate the input of someone else so we can make sure the biopsy is from the appropriate part of my leg, etc.  It’s up to me now.  I will pay for subscriptions to medical journals, I will buy textbooks, I will do whatever I have to do.  It’s clear that Dr. F. is concerned about getting me diagnosed while I still am moderately impaired and before things progress further.

I tried to “breakup” with my physical therapy center.  It didn’t work so well. (This echoes my past dating life)  The therapist insists that he is doing good for me by offering his services and equipment to me for no cost.  I told him that I didn’t feel my treatment was catered enough to my particular problems.  In the end, I think he kind of knew what I meant.   In the end, this is where I am at.  I said I was uncomfortable going there, especially not knowing what I will owe in the end.  The therapist admitted that I probably won’t make any progress there because I have no diagnosis.  He asked me to please come in and use his equipment for free because the exercises are not harming me and when I know more about what’s wrong, he can treat me appropriately.  Yesterday, I brought in some dessert for the staff and exercised independently.  I feel more comfortable now.  The tension with the talking angel lady is reduced a little.  I feel like I don’t owe them and now can use the facility for what it’s worth -part of my research to find out what’s wrong.

Filed under: Uncategorized Tagged: | multiple sclerosis, muscle biopsy, myasthenia gravis, undiagnosed chronic illness