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I won't know until later today. There's a 3 hour time difference between us, so hopefully he's getting some much needed rest. I'll post as soon as I hear something. Thank you so much for asking. Please continue to hold him in your prayers.Quote:
Originally Posted by Daisy and Delilah
Gosh, I sure hope that he is feeling better today.
I just spoke to him and he seems to be in better spirits at least. I asked "How's my boy?" and he said "Trying to hold it together" but his voice was shaky and I could tell that he was holding back tears. He said he's never felt so helpless and vulnerable.
While we were talking, his dr. called and my son asked if he has Inclusion Body Myositis and the dr. said "No, yours came on too fast. It's viral". This was a relief to both of us. He did tell my son to increase the amount of Prednisone that he's taking, though, and not to decrease it daily as previously instructed since he hasn't seen much progress. He said to keep taking 60 mg. a day until he sees a noticeable improvement. He also told him that if he didn't feel better by tomorrow to go back to the ER or the walk -in clinic, that he would probably be seen more quickly at the walk in clinic. And the dr. will refill his Prednisone as necessary.
His voice was, as I mentioned, shaky, in part, I think, due to his emotional state. But over all, he sounded stronger, although he says he still can't cough like he needs to; he doesn't have enough strength. His abdomen isn't as tight as it was and he still says that he has no pain or soreness, just weakness and partial paralysis. The dr. assured him that this would improve w/time and my son is trying hard to believe that. He wants so badly to get back to work and exercise again. His appetite at least is ok and he doesn't have problems w/breathing and the dr. made a point of asking him that.
His girlfriend came over and spent her day off w/him, brought him dinner, gave him a little massage and just did her Florence Nightingale routine and he really appreciated it. He said that she's the only one who can calm him down. His friends keep calling and checking on him, even his manager offered to help and, since his girlfriend has to work today, one of his other female friends who just moved to LA is going to watch the Superbowl w/him. They probably both need the company.
So. If he doesn't feel better tomorrow, he is going to go to the walk- in clinic. I'll update you as I hear more. Again, friends, thank you so much for your inquiries, concern and, most of all, your prayers. I know that they're working for him, albeit not as quickly as we both would like to see but even a little improvement is better than none at all.
Waiting is the hard part! I think you said he had had a cold or some viral thing before this, so that might have brought it on?
Sounds like he takes good care of himself - maybe a good antioxidant or immune system booster (vitamin, not drug!) might be a good idea afterwards?
Poor kid - so upset at being so vulnerable...I think he'll be SO happy when he is well and has his first workout!
Here is a link to Irwin Barker, a Canadian stand-up comedian; I just love his work!
I heard him on an interview last week, and in June he was diagnosed with terminal cancer. It's at bay right now with chemo...but maybe your son can relate somewhat as helplessness is a big thing here. Irwin has incorporated his illness into his act! though he doesn't use it all the time.
http://www.irwinbarker.com/
To hear the interview(it's on this other site for a month), click on the link and scroll down a tad to January 30. Click on Irwin's name and enjoy.
http://www.cbc.ca/soundslikecanada/interviews.html
I just hope your son gets some comfort and laughs here! :)
Thank you so much, Candace. I'm sure he'll appreciate this. Another good comedian friend of his, Robert Schimmel, also has cancer and, although I'm not sure if he incorporates it into his act or not, my son says he's one of the nicest and most mannerly gentlemen you'd ever have the pleasure of meeting. He accepts his illness w/grace. I don't know when my son will be able to use the computer again but when I get his reaction about the clip, I'll be sure to post it. Thank you again, my friend. :)
Yes, he's had sinus problems for the last couple of months now. Every time there's a weather or climate change, he has problems and he was back and forth from LA to OH several times in Dec. He's big on vitamins and herbs and is always mindful of good eating habits, rest, exercise, etc.Quote:
Originally Posted by Catty1
If he's going to be on increased doses of Prednisone for any length of time, make sure he has his blood sugar checked. Steroids can bring on transient diabetes.
Wow, good to know. Thanx for that. I think it will probably only be for a few weeks but the dr. has been checking his blood and I'm sure he'll continue. I'll mention it to my son just to be safe, not the diabetes part because he tends to be his own worst enemy w/worry but I'll tell him to be sure that the dr. check his blood sugar.Quote:
Originally Posted by Grace
Quote:
Originally Posted by Medusa
You might want to suggest that he let the doctors know of all the vitamins and herbs he has been taking. It has recently been something that our clinic regularly asks us along with asking us about all our medications. Not that it is likley that these may be in any way involved as he is young and probably not taking any medication, but just to cover all bases.
Thank you for that again. I'll be sure to tell him. :)
Just reading this now, you & your son will be in my prayers. i hope he continues to improve and gets his health fully back soon.
I can sympathize with how helpless you feel being so far away - we're all from OH, and when I was in IL, my sons were in CA...now they're back in OH & I had to move to RI. Frustrating! I think about what I would do if one of them became seriously ill. Thank God prayers know no boundaries!
As I mentioned earlier, my son's girlfriend is a nurse and she has spoken to another nurse who served in Iraq and this nurse said that she saw this type of illness there frequently and that it was temporary. My son's girlfriend also spoke to 4 doctors, all of whom said that they're surprised that the ER dr. gave the diagnosis of myositis so quickly. So now my son is really angry because he feels like the doctors don't know what they're doing. I'm trying to get him to understand that his symptoms could be a host of things but that isn't helping his state of mind any. He's on his way to the walk-in clinic now and they told him to prepare for a long day, possibly he'll get an MRI and maybe an EMG. I guess I'll know more later but it probably won't be until tonight. So I wait. This is agonizing.
Mary,
You and your son are in my prayers, honey. If you need to talk, call me on my cellphone. I'll PM you with it. I can call you back cuz I've got tons minutes on it.
This seems like it might be taking a turn. I don't know if that is good or bad but the "unknowing" must be unnerving. I know that being so far away must be driving you crazy. (((hugs)))
Isn't that the truth! God is everywhere. He is with your son and you at the same time. I have often prayed when I am concerned about a loved one far away "I know I can't be there but you can."Quote:
Originally Posted by cyber-sibes
I'm so glad things seem to be looking brighter for you. Hope your son keeps on improving every day.
Don't worry too much about the diabetes thing...sounds like your son is on prednisone for short term therapy. 6 tablets of 10mg daily is the usual dosage , I was on it a few times myself and my doc said not to worry about the diabetes thing since it was only short term. My dad was on for years and he never had a problem . If your son had a history of diabetes it might be different but not in this case probably. He could ask the doc so he could reassure you. Wishing you and your son best of luck beating this thing.
sorry,
my first reply got cut short. Anyhow, did your sons symptoms start during or after working out with weights? Has he injured himself in any way? You said he is not having any pain, numbness, or tingling, Is that right? Are both arms equally weak? When you say "weak" what do you mean? Can he still perform daily activities? If he is losing his ability to perform daily activities than that is more serious. If he were injured in some way he could have something damaged in his spine that is affecting his spinal cord and nerves. If his weakness is due to an illness than he could just be feeling weak, but still able to move and feel everything normally. If his symptoms persist or get worse than he could get a CT and MRI to rule out any spinal damage or nerve damage. Usually with nerve damage the patient will feel numbness, tingling, and often describes a burning type pain. If your son worked his muscles out to ohard he could be having weakness in his muscles and may describe his weakness as a rubbery feeling in the affected limbs. If that is the case it will improve over the next several days.
I am sure the ER will address those questions and if not help, refer your son to where he can get help. Hope that helps a little.
Freckles1
Seems like now it is just a matter of him sitting back and patiently waiting fo rhis body to heal itself. Sounds like he isn't big on the 'patience' part! :D Glad to hear things are on the road to recovery, even if it SI at a snail's pace, and he woud prefer to be in an Indy car!
Yes, patience is not his strong suit, believe me. He's got a heart of gold and will help anyone at any time. He's been there for everyone and now he's giving everyone else a hard time when they want to be there for him.
I just spoke to my dr. who is also a family friend and he told me that, judging just from what I've told him, that it indeed does sound like "viral" myositis and, if that's the case, it will have to run its course and treatment may take a while. Well, my son is self supporting and doesn't have a wife or live in girlfriend to pick up the slack w/finances, so that's part of his impatience. He wants to get back to work. If this drags out much longer, I may have to go to LA and help him out. But I'm closing one of my offices and I need to have my furniture out, so I've been moving things that I can carry and/or put in my car so that on moving day we'll only have the big pieces to move and it should go smoothly. (Lord willin' and the creek don't rise.)
I'll know more late tonight or tomorrow and I can report how he's feeling and what the dr/s. had to say.
The weakness in his forearms started after working out w/weights. He said they felt "really pumped" but not weak, just strange. It wasn't until the next morning that he said they felt weak. Both arms were equally weak but tonight he said the left one is weaker. He has difficulty plugging something into a socket, taking caps off bottles, peeling a banana, washing his hair, etc. No strength. He has no problems w/breathing or swallowing, no pain, no numbness or tingling, just weakness ie. lack of strength.Quote:
Originally Posted by freckles1
He sees a neurologist tomorrow at 9 AM Los Angeles time. His anger is absolutely out of control. He's so frustrated because he can't work. He has an opportunity to go to Sweden next month for his work and he's convinced that this is going to blow it. I'm stressed to the max because he no longer talks, he just screams.
Medusa, how is your son today? How did his neurologist appt. go? I hope the prednisone is starting to help.
I keep hoping we have good news from your son - even a bit of improvement would lift his spirits.
I haven't heard anything yet today. He called me last night after midnight Ohio time and he was just hysterical. The dr. who filled in for the specialist was saying that it "could be" this and it "could be" that. He yelled at her and said "You're not helping me. Stop freaking me out." To top it all off, his cell phone broke because he had difficulty plugging it in to charge it due to his lack of control of his hands and he has so many calls waiting for him and to make but he had to be at the hospital at 9:00 AM, so he couldn't go to Verizon first. I told him to ask his girlfriend or one of his friends to go to Verizon and get him a new phone. He was just shrieking last night, he was so scared. I didn't get to sleep until nearly 5:00 AM and I haven't been able to eat or even go to the bathroom, I'm so stressed. I'm able to distant healings for other people and for my son, nothing. I can't calm down.
It sounds as though he needs emotional as well as physical help right now. Would he consent to see a Psychologist?
Anything I say to him right now isn't helping. The dr. who speculated shouldn't have done that when she saw he was in such an agitated state. She only made it worse. It's the sense of helplessness that has him so upset.
I'm just wondering if one is feeding off the other right now. He has the weakness, then agitates about it, probably magnifying the symptoms. He's in a vicious circle.
Are you able to talk with his girlfriend without him hearing? Possibly she might be able to get him to someone who can help?
[QUOTE=Grace]I'm just wondering if one is feeding off the other right now. He has the weakness, then agitates about it, probably magnifying the symptoms. He's in a vicious circle.QUOTE]
That's exactly how it is. He did just now call me, though, and he does sound better. I asked him how he feels and if he thinks he's improving at all and he said "If I have to put a number on it, I'd say 5%". Yesterday, he wasn't able to lift himself up off the exam table; today he could. The dr. noticed the difference right away. Then, of course, another dr. came in and ran the same tests that the first dr. did. He ruled out multiple sclerosis and Lou Gehrig's disease and one other one that I'm hard pressed to remember right now. He's inclined to go along w/the first drs. diagonosis of acute myositis. My son said that part of his problem was that they took 15 vials of blood out of him yesterday and he didn't eat for another 10 1/2 hours. Then when his cell phone broke, that was it! They want him to visit the Muscular Dystrophy Clinic but he really doesn't have symptoms of that. The MDA clinic has really good diagnosticians and they treat muscle diseases other than MD and their services are free. He said that if he doesn't improve, he'll go. If he improves, he doesn't want to go. I'm not going to battle that w/him right now. His spirits improved and I'm going to let it be until Fri. when he has to go back in and be rechecked.
Forgot to mention that all of his blood work came back fine. No kidney problems, liver, heart, etc. His CPK is elevated but the dr. said that it isn't as high as some he's seen, so he's not concerned.
Sounds more promising. Will continue with prayers for both of you, and look forward to positive updates :)
Glad to hear he's gradually improving. I hope he continues to do so.
I'll take whatever improvement I can get. He's talking about working on Fri. and Sat. and going to Sweden next week, so he's at least more positive about that. As for me, I'm one big knot. I need a hot soak.
Glad he is feeling better mood-wise...that will help healing.
Prayers still coming your way...I hope you and he can get a bit of sleep, Mary.
{{{{hugs}}}}
Yes, we both need sleep. He had a panic attack at 3:00 AM, understandably, so he was already in a weakened condition.
i'm sending more prayers your way,having mike aslo in on it for your son in hopes he makes a 100% recovery,as soon as his body can.
and you get some rest ok?Try...maybe walk a bit with outside fresh air to get you feeling a bit better for him when you see him.
i know he'd hate to see you all upset and exhausted...he'd worry about you.
I'm sending some positive vibes and more prayers for you both.
sometimes reading can help make us all sleep.
Thanx, Kim, PT has been such a comfort to me. I don't know who Mike Aslo is, though, but if he's good at prayers and healing, etc., I'm all for it!
Oh my gosh... I hope that things will steadily improve with your son. I hope that you will both be able to relax and have some peace soon.
I'm glad to hear that your son's condition is starting to improve. Lots more prayers and positive thoughts are being sent his way. Please take care.
in answer to who is mike... :) mike is my husband...if i ask him to say a quick prayer for someone i feel strongly that needs it...he accually does it :)
he's a good guy.
i'm lucky to have him.
I appreciate it beyond measure. :)Quote:
Originally Posted by catfamily
I'm so sorry to hear about your son's illness. :( I hope he'll get his strength back soon and the condition is not too serious. I can certainly understand if he's scared and frustrated - and you too.
Fister and I will keep our paws and fingers crossed that he's back to normal soon. :)
((((hugs))))
I just spoke to him and he said that he feels he's 25% improved, which is great news for me. He said that he can open a door w/his right hand now instead of using both hands but he still can't take a cap off a pen. He's calmed down quite a bit and even cracked a few jokes, so I'm more hopeful than I have been. My head has felt like it's been in a vise for the last couple of days because one of the drs. said it could be Lou Gehrig's disease and that's why he got so hysterical. When he told me, I thought I was going to pass out. I heard a loud clanging in my ears and I thought I was going to hit the floor. I know drs. become calloused due to working w/devastating illnesses but they need to realize that, when we're sick we're at our most scared and vulnerable. To say something like that to someone, especially someone as young and vital as my son and who has no one there w/him, is cruel. The other dr. told him last night "Well, we've ruled out Lou Gehrig's disease, multiple sclerosis, fibromyalgia, inclusion body myositis, polymyositis, etc. so I'd say that the ER dr. was right on when he said "acute" mysositis." My son and I both breathed a sigh of relief. They want him to go to the Muscular Dystrophy clinic due to the great diagnosticians they have there and they treat/diagnose several muscle diseases, not just muscular dystrophy and their services are free. But he said he'd only go if he gets worse and, right now, he's improving. So he goes back on Fri. and he's going to ask the dr. what his chances are of this recurring since it's labeled "acute" and not chronic. I don't know. I just do not know. What I do know is I've got to relax somehow. I have a gift card for a full day at a day spa that my son gave me for Mothers' Day last year and I still haven't used it. But I'm so stressed that I don't want to waste it right now. I want to go when I can enjoy it. But I sure could use a good deep tissue massage right about now.
Wow...geez...at least for now it seems like this is GOOD news.Hopefully this will be gone for good...very soon.