Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Hi, Sue! It's nice to hear from you. I'm sorry that you are having so many problems with memory. You're right; 41 is too young for this. There is a drug that is showing some promise for fatigue & memory problems; Dr. Baughman in Cincinnati suggested I try it & my psychiatrist agreed. It's called Focalin; it's like a cousin to Ritalin, without all the disagreeable side effects. It's not FDA-approved for sarc, but what is? I've been on it nearly 2 months. I definitely have more energy, although I have to be careful not to do too much, then take two days to recover. I'm not so sure about memory--I'm not making so many mistakes typing messages & I can read better--but I still have problems with word recall & doing the silly stuff you mentioned. A couple of weeks ago I was going to soak some sox in my bathroom sink. I don't know why I didn't just wait for it to fill up; wouldn't have taken more than a couple of minutes. But I went off somewhere & forgot all about it until I walked by the bathroom & realized that water was running all over! Big mess to clean up, but at least it was clean water, not sewage. Anyway, I wondered if you had seen this recent message from another UK member. I can't remember if there is any kind of support group there, but wanted to make sure that Suzan is aware she isn't alone over there.hi>> will write more later,>> ive had nsarc. since 1988, and been through quite a lot. n.sarc is currently in remission, but has left me with permanent scarring.>> i have felt very isolated throughout my illness. and am really happy to find this community. hope to have much contact here.>> suzan>susanmpoya@... Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Mother-in-lawDate: Wed, 05 Sep 2007 13:05:20 -0000 I was reading your post i also have nuero memory problems and have had the nueropsycologist tests that your mother-in-law as had, and it has shown it is to do with the nuerosarc...I am 41 now and the problems started about 5 years ago with the memory although i have been ill since the birth of my 15 year old daughter...one of the problems is me forgetting to turn off the taps and how to get a hair band from my hand to my daughters hair...forgetting where the car is when i go anywhere at first i got annoyed with my self then it turned to frustration and i always end up crying by the time my husband had found me sat in the middle of town not knowing where i was i felt a mixture of emotions...So now i am not left alone and at home i'm a danger to myself....I feel so stupid and the kids get annoyed as i am always asking the same things (like where you going?what time they have work etc)I can just about cope with the other nuero problems but the memory is one i am so scared of loseing at the age of 41 it is bad enough for anyone older with dementia let alone our age. Can you find the hidden words? Take a break and play Seekadoo! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Hi, Sue! It's nice to hear from you. I'm sorry that you are having so many problems with memory. You're right; 41 is too young for this. There is a drug that is showing some promise for fatigue & memory problems; Dr. Baughman in Cincinnati suggested I try it & my psychiatrist agreed. It's called Focalin; it's like a cousin to Ritalin, without all the disagreeable side effects. It's not FDA-approved for sarc, but what is? I've been on it nearly 2 months. I definitely have more energy, although I have to be careful not to do too much, then take two days to recover. I'm not so sure about memory--I'm not making so many mistakes typing messages & I can read better--but I still have problems with word recall & doing the silly stuff you mentioned. A couple of weeks ago I was going to soak some sox in my bathroom sink. I don't know why I didn't just wait for it to fill up; wouldn't have taken more than a couple of minutes. But I went off somewhere & forgot all about it until I walked by the bathroom & realized that water was running all over! Big mess to clean up, but at least it was clean water, not sewage. Anyway, I wondered if you had seen this recent message from another UK member. I can't remember if there is any kind of support group there, but wanted to make sure that Suzan is aware she isn't alone over there.hi>> will write more later,>> ive had nsarc. since 1988, and been through quite a lot. n.sarc is currently in remission, but has left me with permanent scarring.>> i have felt very isolated throughout my illness. and am really happy to find this community. hope to have much contact here.>> suzan>susanmpoya@... Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Mother-in-lawDate: Wed, 05 Sep 2007 13:05:20 -0000 I was reading your post i also have nuero memory problems and have had the nueropsycologist tests that your mother-in-law as had, and it has shown it is to do with the nuerosarc...I am 41 now and the problems started about 5 years ago with the memory although i have been ill since the birth of my 15 year old daughter...one of the problems is me forgetting to turn off the taps and how to get a hair band from my hand to my daughters hair...forgetting where the car is when i go anywhere at first i got annoyed with my self then it turned to frustration and i always end up crying by the time my husband had found me sat in the middle of town not knowing where i was i felt a mixture of emotions...So now i am not left alone and at home i'm a danger to myself....I feel so stupid and the kids get annoyed as i am always asking the same things (like where you going?what time they have work etc)I can just about cope with the other nuero problems but the memory is one i am so scared of loseing at the age of 41 it is bad enough for anyone older with dementia let alone our age. Can you find the hidden words? Take a break and play Seekadoo! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.