Lucy,

Thanks for your reply. I think it's great that they are offering something. Sometimes I just think the hope and the action of doing something might help me more than seeing results. It's a feeling of being proactive, I guess.

I'm sorry you have had PCS for so long! It's good to see that you are still positive and hopeful. It's really encouraging to me. Thanks again!


Mark,

Thanks for reading through that stuff with me. It's good to have your opinion on it. I'm worried that it might be either too intense for me, or that I will put so much into it and not get anything out of it.

I read some articles linked to the site, and it seemed like the professional atheletes were able to return to play. The regular people, however, seemed like they were still going without any results at all.

I think it's good to have something to do, but it might not be for me. I do not drive, and even though it's only 20-30 minutes away from me- it's more time my husband has to take off of work. It also seems that I would need access to some sort of cardio machine 5 times a week. That's more driving involved for my husband, and possibly a gym membership. I'm not up for any of that.

I might call and just see if I can get evaluated, but I'm worried about throwing off the treatment from my neuro. I'm seeing him Thursday, so I might bring it up to him and see what he thinks.

Thanks again, Mark.


Don,

Thanks for your encouragement! It's great to see you've had some days of close to normalcy! I know what you mean about being afraid to get too hopeful. It seems as if this PCS is good at squashing hope.

I may go and get evaluated at the clinic. If they want to use me for part of their research, it might help someone else down the road who has PCS. I don't know.... It's a tough call, because it's so much driving and I can't drive.

I see my neuro on Thursday this week. I'll let you know what he thinks about all this.

Thanks Don!


Linda,

I'm so terribly sorry that you have been dealing with this for so long. Your daughter is very lucky to have a mother like you. You are a great advocate for her.

I hope this doesn't sound insensitive, but I feel glad that my neuro doesn't think I'm a psych case. They tried to dx me with something in the hospital that my neuro wouldn't let them. I think it was associative syndrome or something... I can't remember. He stepped in and said that I have PCS.

I'm sorry your daughter doesn't have the type of doctors that I've been so blessed with. My primary care, Dr. Eaton, and my neuro, Dr. Kang, have both been great advocates for me.

I'm glad you are still looking into different treatments for her, and I pray that you will soon find relief in someone positive that at least believes you! It must be so frustrating!

The Wii is good for me. I am trying to document my symptoms and the time I'm on the Wii. I set up a spreadsheet in Microsoft Exel, with the date on the left column and the different symptoms I experience across the top. It's easy for me to just go through and x the symptoms I've had at the end of the day. I've just added a column for time spent on the Wii fit. I'll keep you posted.

I don't know if it's really doing anything for me, but at least with the Yoga, I'm not pushing myself too hard and I'm able to keep in some kind of shape. If my symptoms start to get worse, I stop immediately. If I don't stop right away, they tend to ruin my day.

The Yoga and balance games are good for me. If I try any of the other games, it's pretty rough. Some of them have you doing a lot of aerobic activity and it's too much for my head. It's a big investment for you, if you are going to get one- I think the Wii runs $200 and the balance board and Wii fit are around $80. I use mine almost every day, unless I'm feeling really badly.

I'm really sorry that you feel so discouraged and helpless. At 15, your daughter has all the potential in the world! Is she taking any meds? Has anyone dx'd her with PCS? I know at least my neuro is the leading guy for PCS and headaches in this area. If you wanted to take the drive to try and see him, maybe it would be good for her? I don't know what kind of travel you are up for, but maybe you can find someone who can at least listen and help you feel more positive.

The B-12 is dosed by microgram, so 1 milligram is 1000 micrograms. I guess it's actually a standard dose. I take an oral pill, it can also be dosed with a shot intramuscularly. I believe a person can take anywhere from 1 mg to 5 mg safely. There is a thread on Neurotalk that can give you more info about it.

http://neurotalk.psychcentral.com/thread104778.html

Keep your chin up Linda. What you are doing for your daughter is amazing! Keep coming here for information and venting. You'll get there. I'm praying for you and your daughter. What's her first name?

Thanks, Kate