Thursday, September 27, 2012

Still Waiting

My trip to the doctor today did not yield the desired results. My leg is not healing swiftly or properly, so I left with those darn stitches still in, a prescription for an antibiotic, and another appointment for 11 days hence. 

My preliminary biopsy results show that there is no inflammation of the muscle, so  the problem is not autoimmune. The samples have been sent out of state to be analyzed for the presence of mitochondrial disease. 

I will be the first to admit that patience is not always my strong suit. Especially when it comes to my health issues. But, patience I must have. 

 So, I wait. 


Monday, September 24, 2012

"Miss Louise"

Louise Hudson, "Miss Louise" to me, celebrated being 96 years young yesterday. If I live to be 96, I hope I look this good. 

Another really neat thing is that, at 96, Miss Louise still has friends to celebrate with her. So many people her age have no friends left. But Miss Louise has spent her life making friends of all ages, including 52 year old ME. 

I am not quite sure just why Miss Louise "adopted" me at Crawford Street United Methodist Church. But, I am certainly glad she did. She has faithfully called me, prayed for me, sent me cards, and just loved me. The older I get, the more I treasure the people still on this planet with me who really and truly love me. 

I have long been slated to sing at Miss Louise's funeral when the time comes. At this rate, she may very well outlive me! 

We may have to find a back-up, just in case. 


Wednesday, September 19, 2012

Not MG

After 10 years of being diagnosed with Myasthenia Gravis, I found out yesterday that this is not what I have. It is a bit of a strange feeling. I have been on MG message boards, mailing lists, and have been to gatherings with other people diagnosed with this particular neuromuscular disease. My symptoms fit into the "mold" of MG and I never really questioned my diagnosis.

One thing I have found out from my research and observation is that many neuromuscular diseases have very similar symptoms. Often, the difference is in the prognosis. The muscles of myasthenics do not degenerate. The problem is with the transmission from the nerves to the muscles. 

While I have tried very hard not to "become" my illness like many folks I know, dealing with what I thought was myasthenia gravis was part of my identity. Hopefully, by next Thursday, I will have an accurate diagnosis. I guess it will become a part (but by no means ALL) of my identity. And I will buy a new Medic-Alert bracelet and just keep living as well as I can for as long as I can. 


Thursday, September 13, 2012

Finally!

After over a month long wait, I am finally scheduled for my muscle biopsy next Tuesday. This is not exactly going to be fun, but at least it should give me answers. I am past ready for some answers. 

I am trying to read up a bit on what to expect. Like most information gleaned from the internet, it varies from "soreness, no big deal" to "severe and prolonged pain." I am planning on the "no big deal" myself. 

I won't say that I am not scared. Despite my many surgeries, I am a little nervous about a procedure that I won't be asleep for. And I am apprehensive about what the doctor will find. Muscle degeneration is not ever a "good" thing. But finding out how quickly this is happening, is it likely to continue, etc., will be helpful as I figure out ways of managing what may be increasing limitations. 












Thursday, September 06, 2012

Waiting

First of all, I must admit that having to wait, especially for medical tests, is not something I do well. I have a degree of patience with many things. This is not one of them.

Right now, I am waiting to be scheduled for a muscle biopsy. This biopsy will hopefully tell me whether or not I have indeed been misdiagnosed with MG all these years. It will also potentially tell me if what I do have is a form of mitochondrial disease. The big difference in the two is that mitochondrial disease is progressive. And my last EMG revealed serious deterioration of my muscles. 

Over the past year or so, I felt like I was getting weaker. I attributed it to the stress of caring for and then losing my Dad. My father-in-law was diagnosed with cancer before my Dad's estate was even settled. But, while stress can exacerbate any neuromuscular disease, this is far more than stress at work. 

I have adapted as best I can to the increased weakness and loss of stamina. But, I am a planner. I want to know just what I am dealing with. Bad or good.

So I wait.