OT Lamotte77 mezombie and others

Discussion in 'Fibromyalgia Main Forum' started by webintrig, Nov 7, 2006.

  1. webintrig

    webintrig New Member

    Hi,
    Thanks for your reply to my reply.

    I check out your profile and I saw that you are having a hard time writing or concentrating...I call it cognative..I even spelled that wrong... problems.

    I am having the same problems and I wanted to tell you what I am trying to do and did.

    They are using Articept for ALZ people for cognative problems so I wanted to know if they had any trials or studies set up for FMS people. They said no. I asked why? NO interset in it by dr. ect...They said right now they were trying to make a generic Articept. I asked well couldn't my dr. prescribe Articept for me if he wanted to. She said yes.

    My sis asked her dr. for it and he told her no because there was no clinical trials or studies have been done on Articept and FMS. Let your dr.s know there is grant money for this if interested in this study, Just contact Articept. The lady on the phone at the Articept research even told me she thought someone at her work was using Articept for the same problem..cognative.

    Well I don't know the critire for this but I see no reason if I ask my dr. for this drug and I keep a journal why he can't prescribe it.

    Does anyone agree with me or know any reason why it can't be give out as in prescribed for our cognative problems.

    Lamotte77

    Jump in here at anytime with your expertiseeee...
    Again I am sorry if I spelled things wrong..hey but I bet I came close...LOL!

    Fibro hugs to ya,
    [This Message was Edited on 11/07/2006]
    [This Message was Edited on 11/07/2006]
  2. Steinem

    Steinem New Member

    Sorry to jump in here, but I just wanted to let you know that there are quite a few CFS/FM'ers who have gotten help for their cognitive difficulties using one of the stimulants...there's also an article on it in the ProHealth library you can look up.

    Quite a few people have reported success with Adderall or Ritalin or one of their counterparts...they are ADHD medications, but do help those of us with CFS/FM 'brain fog', concentration and memory problems as well.

    They remain controversial in the CFS/FM community because they 'can' also increase energy which can cause someone to push/crash, but I think they are very worthwhile for those who can use pacing to avoid this.

    I'm sure Lamotta and Mezombie will be along to give their thoughts on your questions and again, apologies for butting in.

    Good luck in your quest.

    S.
  3. webintrig

    webintrig New Member

    Don't apologized, it said others...

    I am open and welcome any and all suggestions on this brain fog...

    My mother develop ALZ and she had FMS...

    So I thought maybe Articept would help me...

    You know how medical insurance companies are and dr.s are...

    No one wants to do a Cat Scan on me to really see my problem...

    So what can I do...

    Thank you for that information I will pass that on to my to my pain management dr. I have copied and pasted to my email...I hope I remember to bring it to their attention!

    Thank you so much from the bottom of my heart {tears} I really hopes someone listens to me..

    I have both FMS and CFS so I am in need of something to help me..

    Soft hugs,
  4. Steinem

    Steinem New Member

    Every post I've ever read of yours makes me realize what a wonderful person you are...I mean it - the power of your words really touch my heart.

    You will be in my thoughts to a resolution to this...I wish I could wave a wand and we could all just be allowed to live normally, with good health. Life has so many struggles without being able to think properly...I can't even balance my checkbook - simple things people take for granted - have gained so much weight because I don't have the energy to cook healthy or to move around...

    The worst for me is definitely no longer having a brain...I would love to know if others have success with this ALZ medication - it definitely makes sense, if it helps those with ALZ with cognitive problems, why couldn't it help us, right?

    I had a complete remission for several wonderful years using a stimulant, but unfortunately they do quit working for a lot of people after time - I discovered during those wonderful years that I really am capable and smart and it was heartbreaking to lose it again...I miss being able to write and speak properly.

    I share your tears and will keep you in my prayers. You are a terrific person and I wish you much success.

    Hugs,
    Jill
  5. webintrig

    webintrig New Member

    I had an mental/emotional evalution today and I am so drained. I brought this up during my evaluation if there was only a pill to help me for my memory! I am losing my memory { crying} as well as being able to find the right words to speak and comprehend what is being said or being able to retain anything. I am still going to fight to the end!
    Your kind words about me and how you feel was a welcomed and warm surprise to me! {smile}...
    I am not to sure how much more torment or torture that I am going to have to go through to get my SSD. I just found out my daughter has cervical cancer to what degree I don't know. She is 21 and been married 2 years now and trying to have a baby. I also found out my cousin which was 38 just died and they don't know what from. She has been my email buddy and friend...like a sister to me! {sad} she leaves behind 2 teenagers!
    I am so tired but I will never give up until the Lord calls me home.
    Again thank you for your kind words my friend! I needed to hear that today! Maybe I will get some much needed rest now! Please continue to pray for me!

    Soft hugs,
  6. mezombie

    mezombie Member

    I'm sorry it's taken me so long to get back to you, but I'm in a flare right now, and more of a zombie than ever. I'm sure you can relate!

    Thank you for thinking of me and suggesting Aricept for my cognitive problems. I've tried Provigil (a sliver made me hyper for 24 hours) and Ritalin (acutally made me sleepy!), but not this drug.

    I did a little research on the web on Aricept. It's not a "controlled substance", meaning the DEA restricts how it's prescribed, so that's not a reason your doctor not to give it to you. And it's not unusual for those of us with CFS/FMS to get prescriptions that are "off-label", meaning for a reason other than the one the FDA approved the drug for. If he wants to, he can legally prescribe it.

    I got as far as googling Aricept off-label and came up with some interesting articles. If you're up for it, you might want to do that and read some of them. I'm way too brain-fogged at the moment to go through them all! Maybe you'll find something to bring to your doctor. For example, there was something about giving it to pilots and how much better their memory was than the pilots who didn't get it.

    Lamotta77 might know more about this than me. You might want to edit the title of your thread--it's Lamotta77 with an "a", not an "e" at the end, so he may have missed this.

    I'm so sorry to hear about your daughter and your cousin. That's the last news you need! I had to deal with some stressful news this week as well, so I know how that can affect you. I do hope you get the rest you need.

    Hang in there!
  7. webintrig

    webintrig New Member

    I will take back the suggestions to of course my GP and see what he thinks out sending me to a neurogolist. I have to do this because this is how my ins. is set up. Yeah I keep having these major pains and I figure it is my nevres and my pain management dr. wants to do a series of 3 separate nevre blocks in my left hip . Granted I have pain there and Osteoparosis there but I also have it in my back and neck. I am having major pain in my back and can't figure out why he is not doing my back and just the hip. He says it might work and then it might not...I just wondering should I be going to a Neurologist. Well anyhow they will probably send me after the evaluation report was done on me by the SSD ladyto a Nero.dr. or maybe they just might have a white coat ready for me...haha!!Reminds me of the old song sang they coming to take me away haha they are coming to take me away hehe to the funny farm..lol

    Well, nightie night,

    Well much love my friends and nightie night,