Friday, March 25, 2011
Monday, September 24, 2007
The Latest Update
Friday, August 24, 2007
Life's daily challenges
Thank you again all of you for your support and prayers. My neurologist visit yesterday was disheartening. Although this is considered in his mind to be a 'mild' case of transverse myelitis, and that he says I am 'blessed' to not have this worse, it obviously is still a big issue to me. Either I will get better progressively, or I will just learn to deal with it, thus making it seem that my condition has got better. 'Just get used to it, Jeff' was the phrase that stuck in my mind. I didn't like the fact that he said that there may be permanent damage, and my current status may never improve. Also the fact that the neurologist told me that the lesions in my neck were overlooked by the radiologist initially didn't make me happy. I guess it all depends on what is between my ears and how I handle this latest challenge in my life.
I tell people that my hands feel like I've been writing my lawnmower for two hours in the vibration has hurt my nerve endings in my hands. That's kind of how it feels, or if your arm has fallen asleep, the numbness is similar.
We went to a prayer vigil last night for a five year old that has leukemia and the outcome does not look good for him. The family is very strong but I'm sure there will be many challenges in the road ahead of them. I guess perspectives slap you in the face every day in regards to what we should be thankful for and have gratitude towards.
It could be worse...Thursday, August 23, 2007
Occupatioanl Therapy and Neurology Visits
Just to give you a update...
I had the good news is my occupational therapy and session went well and my grip strength went from 65 pounds to 100 pounds since last week. Balance is still an issue, and I will be working on the dexterity for my hands.
My local neurologist had less good news, stating that the damage in my hands may or may not come back completely, partially, or not at all. Recovery time could be a year or so.
Although my battle with this disease is considered to be "mild", and I am a "lucky & blessed", it sure doesn't feel like that.
More later...Tuesday, August 21, 2007
U. of M. Trip
Yesterday was a long day with a trip to the University of Michigan hospital.
I met with two doctors, had a half hour review and exam, followed up with a one hour review of my previous MRI’s done at the hospital, and many answers to our questions that we have.
I had more blood drawn, to rule out nmo (Devic’s Disease, or Neuromyelitis Optica) , and we’ll be meeting with them again in six months with an additional brain MRI and follow up.
Basically, they agreed that I have Idiopathic (which means they can’t identify how this started) Transverse Myelitis, and the treatment that I have done was exactly what they would have prescribed, and it now is just a matter of ‘hanging’ in there as my condition will improve. This condition will take a long time, and will be measured in weeks and months instead of days. The odds of my reoccurrence of this disease are about 10% to 17%. If it does come back, there is a good chance that it could be the beginning of multiple sclerosis or nmo.
I am finally off all of the steroid treatments and will only be taking vitamin B12 as a supplement at this time.
As far as my hands and rest of my body goes, my hands are still not improving but my body is improving slightly every day. I am now driving, but still am very frustrated with my loss of senses in my hands. Occupational therapy will hopefully help, and I will be meeting twice a week to help improve my strength, balance, and sensory deprivation.
I received a new software (a voice recognition software called dragon naturally speaking), and hopefully it will be more accurate than the Microsoft software that I am currently using.
What is Devic's Syndrome?
Saturday, August 18, 2007
Going to U of M on Monday
This weekend marks the end of my Steriod treatment... thank goodness. Pam and I will be headed for U of M to meet for a consult... we'll see what happens. Check back here for the update!