I want to know what is wrong with my leg and the not knowing is making me crazy.
Is this what I've become? Sans cats, of course.
I replay the doctor’s appointments and PT sessions in my head and look for clues and consensus. I’m left with confusion and contradictions. I want to put aside my need for a name to associate with the problem, but I can’t right now. I teeter between thinking the problem is another chronic disease to add to my list and that it is a stupid injury and I’m stupid for pursuing any sort of diagnosis.
The Physical Therapy center I am going to is great in many ways. The staff are caring, I am being challenged, and I receive a lot of help and care. And, I’m attending for free at this point. I’m so grateful for the opportunity. At the same time, the experience is contributing to my craziness. I’m there each day facing my leg problem. I get mixed reactions from the support staff. One person thinks I need to try harder and tells me I’ll recover just like the girl who broke her tibia. One person thinks my body is sending her messages about what is wrong and the problem is with my posture and back. Dr. S. is convinced I will no longer have a problem once I continue in therapy because I won’t have as much weakness and will reduce the tone in my leg.
But here’s the thing. I have a $1,100 ankle foot orthosis waiting for me at the Orthotics center. My PM&R doctor is the only person who thinks I need this. Do I want to spend my money on a piece of plastic that may not help me? What if I go through all of this and the end result is that I’m just overweight and lazy and it’s all in my head? That it’s nothing. No brace needed.
Earlier today, I tried to convince myself that I have Myasthenia Gravis. Why? Because of my eye involvement, the comment from my ophthalmologist, and because of these articles I found. Also, because my good friend Susan made mention of it and my PM&R doctor believes my problem is autoimmune. I was tested for the acetylcholine antibody and was negative; however, the articles show that it is not always a clear indication and that MG varies greatly from patient to patient. And, I’m a great example of not fitting the mold as evidenced by my Hashimoto’s without the antibody. Most of all, I want to convince myself that I have something so that I can stop searching, replaying, obsessing, and losing my mind in the process.
I’d really like to spend that $1,100 on a vacation.
Filed under: Uncategorized Tagged: | ankle foot orthosis, chonic illness, myasthenia gravis, physical medicine and rehabilitation, physical therapy
Hey, there is another antibody test called the MUsK antibody test … 75% of myasthenics have the acetylcholine antibody ..but 25% do not …of the 25% who do not …95% have the MUsK antibody (still leaving a very small percentage that are antibody negative.)
It seems that since the MUsK test came out, rather than testing for it, those who’ve tested negative for the acetylcholine are just being told ‘no, you dont’ have it’. Rather than further testing (because now, like lupus, the docs believe that a patient must be antibody positive …primarily true ..but without both antibody tests, they can’t rule it out!!)