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

[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

[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.

[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.

[caseysmom]

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.

She broke up with him just because of this? Wow he can do better anyway poor guy.

[Karen]

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.

The "no appetite" thing could be due to the Prednisone. Prednisone makes me completely starving all the time, but my brother - Lady's Human - ends up having to reminded to eat - his appetite goes away completely. It's not much to worry about, when he's off the Pednisone entirely, it'll be back to normal.

It was so strange for me, my body saying "hungry! hungry! hungry!" when my brain knew I had just eaten my fill, and I couldn't possibly eat more.

[Medusa]

The "no appetite" thing could be due to the Prednisone.

I forgot to mention that his dr. took him off the Prednisone. He was only on it for 4 days. He said that Prednisone masks other diseases so he felt it wouldn't do him any good. Funny but when he was on it, he didn't get any better. When he went off it, he started to improve. His dr., my dr. and my friend who is a nurse, all say that his comeback has been remarkable. It usually takes 3-6 weeks before you see improvement and he's almost back to normal.

His "girlfriend", for lack of a better word, says she still has feelings for her ex-boyfriend. She was just looking for an out and she found one. Better that he find out now than when he was in deeper but I still think her timing was awful. My Mama Tiger claws have definitely come out on this one.

[catfamily]

I have to say that I am really upset and angry at His Girlfriend.What kind of person is she anyway?
One great thing is...he'll learn to pick the RIGHT one next.He'll see through everyone and their faults before giving his love again.
He'll be a better man and find a perfect wife and have a great family later on.
Don't worry...it's best for him to find out now about her.
The feeling of loss from her will pass,right after another lady starts flirting with him
He'll be fine,don't worry.
Mom's love is forever...and THAT is what counts
He'll have his own family later on...he's still young.
He's VERY lucky to have you.

[jennielynn1970]

God, and that girlfriend was a nurse as well??? What can you say about her bedside manner?? That just sucks that she would break up with him when he is sick and feeling so down. She must be a terribly self-centered person. Reminds me of the ex-wife of the marine on the Extreme Makeover Home Edition from last night (compassion-wise...)... Marine loses leg in Iraq, comes home, is going through rehab to get mobility back, and wife leaves him with the 4 kids to go off on her own. What kind of person does that??!!

[Medusa]

What kind of person does that??!!

A self centered one, that's what kind. I can't imagine doing that to a person. If she doesn't have feelings for him, ok, fair enough. You can't fake what ya ain't got. But her timing and her total lack of compassion is what gets me. He said that it's like she flipped a switch and just turned off. No signs, no warning, no cooling off. Just done. Period. She called him and wants to meet to talk further and he put her off until he's feeling better. This is not like my son at all. He's always been one to say if there's a dealbreaker, then so be it. He said that he's healing physically, emotionally and mentally and it's all too much for him right now. Personally, I don't trust her now. If she wants to get back together, she'll do it again. I wouldn't want to wait for the other shoe to drop. Enough about her. My son is improving and that's all I care about. This isn't his first relationship and it won't be his last. His heart will heal just as his body is healing.

[Grace]

Better he finds this out now, rather than get married and then she wants out - and takes him to the cleaners in the process.

He needs to ban her from his life - forever!!

[cassiesmom]

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.

Wait a moment, isn't your son's (now ex-) girlfriend a nurse? Geesh, that stinks. I am thinking of you and your son today & praying.

[Medusa]

Better he finds this out now, rather than get married

Well, my son doesn't believe in marriage. He feels it's an outdated idea. (Famous last words, huh?) He could change his mind, of course, but it isn't too likely in the near future, that's for sure.