It was a very nice day in the Ozarks, sunny, light breeze. Right now a light rain is falling. It feels cleansing. Bill Evans playing ballads in the background, cleansing and soothing.
My medication arrived today and that is surely a relief. I am going to backtrack on the story a little for those who don’t know.
In October ‘05, I woke up one morning after a gig and both my hands were completely numb. Very scary for a guitar player. I talked to a lot of people about the problem, including other guitar players and all of them said it could be one of two things, nerve damage or carpal tunnel syndrome.
By the way all of this was happening as I was waiting for the “Trouble Ain’t Over” record to come back from mastering so, that added an amount of stress.
So, given the choice between nerve damage or carpal tunnel, I was hoping for the nerve damage scenario. I don’t want to belittle anyone with nerve damage as I, now, better understand the seriousness. At the time, it seemed like a possibly less expensive route.
Anyway, I quit playing guitar totally and went to a chiropractor; her opinion was nerve damage. She was very kind and treated me several times before telling me that I wasn’t showing progress. She referred me to a neuroligist with the opinion that is was the dreaded carpal tunnel.
The first day I met the neurologist, I explained my financial situation (musician with no insurance) and the fact that I feared the expense of carpal tunnel surgery. So, the first thing he did was administer cortisone shots to see if I felt any relief. The idea was that if I did show improvement, then it pointed to carpal tunnel and that would be the cheapest way to get an indication. The next step was to take a cycle of steroids with the same premise. After no improvement, we did the electrical tests and, once more, no sign of carpal tunnel and bills mounting. See, the thing that baffled the doctor, as far as M.S,. was the way the problem presented itself. One reason being that it showed in my hands instead of legs. That’s oversimplifying and if he were here he could explain in more scientific detail. By the way, for those not familiar, M.S. is a disease which causes the immune system to attack the myelin sheath of the spinal chord.
Next step was an M.R.I. followed by two more the same week. There was indication of possible M.S. in the brain and spinal chord from the M.R.I.s. Bills now skyrocketing; early on the doc explained to me that diagnosing M.S. is expensive and time consuming.
Next, we did a spinal tap that, unfortunately, indicated an abnormally high white blood cell count. The problem with the cell count was that it could indicate a number of other things than M.S. and some of those were worse propositions. So, two more spinal taps, white blood cells o.k. and I, officially, have M.S. Once diagnosed, I started to play guitar (poorly) everyday because it wasn’t going to make anything worse and seemed like possibly good therapy.
One problem with explaining M.S. to people is there are many forms and/or stages of the condition. The most common is relapse/remittance where and individual experiences symptoms for a period of time and then they go onto remittance. The remittance can be two days, ten years, nobody knows.
There are a few medications available. They are interferon based and the function is to keep the immune system in check in order to avoid relapse. So, ironically, one of the few situations where we don’t want to strengthen the immune system.
My M.S. is not relapse/remitting. I am at a stage where the symptoms don’t ever entirely go away. Sometimes I will have an exacerbation (often stress related) and symptoms will get worse and affect other areas, then subside. The idea, for me, hopefully, the medication will slow the disease from progressing as rapidly.
The doctor prescribed Betaseron. It is an injection every other day. The main side effect is you feel like you have the flu for several weeks after starting. It’s also extremely expensive and the only way I could afford it was through the help of a foundation that provided it with a very small co-pay.
When you start this process, the company sends you a ton of info and a lot of it is thinly veiled testimonials from patients. So, I asked Doc, will this stuff make my hands feel better and help me play? He said, “no if you’re playing better, it’s because you’re working it.”
After a while, I was playing better and my hands felt better. Maybe it’s just in my mind but, if it is, I don’t care as long as it’s better.
In December, I got a letter from the foundation saying they were going out of business but the same service would be taken over by another entity; there would be a smooth transition.
Well, I don’t know about other folks, but the transition wasn’t so smooth for me. The end result was that I first slowed the doses and then ran out. Oh yeah, my hands started feeling worse; in my mind? Maybe, or maybe one of those exacerbations due to stress. So, I got my medication today and took my shot and began the process again.
Sadly, there are probably a lot of others in the same boat with this particular change-over of providers. I am sure it is a huge undertaking. It would be impossible for me to complain because I would not receive the medicine any other way. I know too, that there are many people in this world for whom this kind of help is not available and going through this little glitch in the system makes my heart go out to them.
1050.martin wrote,
HI!!
Sorry about your continuing problem… I too have nerve damage from a2 separate auto accidents and 3 major surgeries that followed…. bilateral 1st rib resections & L4-L5 disc decompression. The nerves from my shoulders too my finger tips are severely impaired and have been since 1992. Finally found some steady help. try SWMG.com. Pretty reliable and very caring.
Good Luck and God Bless.
If you can send anyone to my blog…. or know of any kind of help for me…. please send them or let me know.
Thanks
Link | April 28th, 2007 at 2:27 pm