Scared for my son. Please help w/comments *Update 4/16*

[Medusa]

My son called me after his clinic visit. They took 7 more vials of blood and he asked them to at least switch to the other arm because his left arm was sore and bruised. He said he has so many needle tracks that it looks like he's a heroin addict.

Good news: all the drs. seem to agree that it's viral and not chronic and they're pleased somewhat w/his progress in certain areas. They're pleased that he can get up off the exam table on his own and shower, wash his hair, etc. But his reflexes aren't what they should be. They had him hold his hands out in front and link his fingers together and pull. He did it fine. But when they hit his knees w/the little reflex hammer, not good. He told me that on the way to the clinic that his knees were bothering him and he wasn't sure why. But since his other reflexes were working ok, they're not too alarmed. However, his CPK went from 500 to 700 to 1050 which I don't understand, since he's at 50% progress. So. He goes back March 7 for more blood work and a nerve conduction test to "be sure this doesn't come back" as the dr. put it. The dr. told him not to worry, that it isn't chronic, that he doesn't want him to lift anything today or tomorrow and that he can do light exercise. My son felt relieved when the dr. said that it isn't chronic. He said that as long as he continues to improve, he's ok. He just doesn't want to regress.

Btw, remember the dr. that I told you scared my son so badly and then laughed? As it turns out, he actually has grown to like her. He said that she at least smiles. The other drs. are very serious and he doesn't like that.

So I'll continue to update on his progress which I'm hopeful will continue and for sure I'll post after his next visit to the clinic on March 7. He doesn't need to go back before then unless he gets worse, which we're pretty hopeful that he won't.

[Daisy and Delilah]

More thoughts and prayers going out from Florida. This is one of the scariest things I've ever read. I can't even begin to imagine what it would be like to experience it first hand. Again, I just think of one of my kids calling with this kind of news. I would have to be hospitalized.
Giant hugs to your son and to you too, Mary!! {{{{{HUGS}}}}}

[cassiesmom]

Prayers being said!

[NoahsMommy]

I'll be keeping you all in my prayers for a speedy healing for Glenn.

Hugs and Love,
Kelly and Kits

[phesina]

Mary, we are all so happy to hear that things are improving for Glenn! We continue to pray and send good, warm wishes and healing energies.

Love, hugs, and purrs,
Pat and cats

[cassiesmom]

However, his CPK went from 500 to 700 to 1050 which I don't understand, since he's at 50% progress.

I looked this up, because I had a suspicion about why it was still rising but I just wanted to check.

Creatine phosphokinase (CPK or CK) is an enzyme found in the heart (muscle), skeletal muscle and also in the brain. CPK goes from the muscle to the bloodstream after an injury to the muscle (such as myositis or a heart attack, or even having multiple blood draws). It should start trending back down as the myositis continues to resolve.

Mary, I hope your son is doing better and better each day! I'll keep praying!

[Catty1]

Go, Glenn!!!

Are you getting some sleep these days, Mary?

[Medusa]

Glenn is doing better physically. He feels that he's at about 85%. He lost 5 lbs. and he has no appetite now, which concerns me because he's always been a voracious eater. But his girlfriend broke up w/him so I think that's contributing to it all. Nice, huh? She actually said "Am I going to have to take care of you for the rest of my life?" Such compassion. If that's the way she felt, she could've waited. She saw that he was improving and she could've waited til he was back to 100%. My heart aches for him right now. He's been through enough and didn't need this.

I haven't had a computer since Saturday and I'm currently waiting for replacement parts. My computer may quit before then, so if I don't post, you'll know why. This has just been an awful month, mentally, emotionally, physically and financially. I'm ready to have a breakdown myself.

[Rachel]

Good news: all the drs. seem to agree that it's viral and not chronic and they're pleased somewhat w/his progress in certain areas. They're pleased that he can get up off the exam table on his own and shower, wash his hair, etc. But his reflexes aren't what they should be. They had him hold his hands out in front and link his fingers together and pull. He did it fine. But when they hit his knees w/the little reflex hammer, not good. He told me that on the way to the clinic that his knees were bothering him and he wasn't sure why. But since his other reflexes were working ok, they're not too alarmed. However, his CPK went from 500 to 700 to 1050 which I don't understand, since he's at 50% progress. So. He goes back March 7 for more blood work and a nerve conduction test to "be sure this doesn't come back" as the dr. put it. The dr. told him not to worry, that it isn't chronic, that he doesn't want him to lift anything today or tomorrow and that he can do light exercise. My son felt relieved when the dr. said that it isn't chronic. He said that as long as he continues to improve, he's ok. He just doesn't want to regress.

Btw, remember the dr. that I told you scared my son so badly and then laughed? Guess what her name is? Dr. Kevorkian! As it turns out, he actually has grown to like her. He said that she at least smiles. The other drs. are very serious and he doesn't like that.

So I'll continue to update on his progress which I'm hopeful will continue and for sure I'll post after his next visit to the clinic on March 7. He doesn't need to go back before then unless he gets worse, which we're pretty hopeful that he won't.

Thanks for all the updates, Mary. This has indeed be a scary one for us here, but the improvement he has had is impressive and encouraging. I'm sorry Dr. K. blurted out all the things she had been considering...but at least she considered them. She was trying to rule out everything she could possibly think of. I'd rather have a good diagnostician with a poor bedside manner than the other way around. I hope that your son will take things slow and gradual and not try to do too much, especially with the exercising. The last thing he...or you...or us...needs is a setback.

[Medusa]

I'd rather have a good diagnostician with a poor bedside manner than the other way around.

I certainly don't want to appear argumentative, especially after everyone has been so kind to me throughout this ordeal. And ordinarily I would agree w/the above statement. But she began with "I've never seen this before. It could be Lou Gehrig's disease". So, if she'd never seen it before, how could she make a statement like that?

Doctors and people in general who are not aware of the power of words are behind the times. Words can harm and words can heal. Far be it from me to be preachy and get biblical but even the Bible states that "the power of life and death are in the tongue". If this doctor couldn't think of anything encouraging to say, she would've done less damage by just keeping quiet until there was a diagnosis. I think if doctors could see just how their words truly affect their patients, they'd choose their words more carefully. My son went into a tailspin and because he did, I did. Stress management plays such a large part in healing and that one simple sentence halted his progress. However, both my son and I realize that she meant no harm, that her intentions were only the best and that she simply lacks grace and communication skills. It's been a learning experience for everyone involved, including this doctor.