Announcement

Collapse
No announcement yet.

hello out there.... aka where the heck is everyone?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • davidwoz
    replied
    mailman - IMHO, MMN messes with your head as much as with your arms & legs. I've struggled at times with the uncertainty. Being able to compartmentalize and just push it out of my head helps. Fortunately, i've not fallen into a depression. What I have certainly learnt is that getting plenty of rest helps. That doesn't have to mean lazing around all day - for me it has meant going from working 70+ hours a week to 30something, making sure I sleep in a couple of days a week (usually I'm an early riser), and various other lifestyle adjustments.

    Leave a comment:


  • Mark Kirby
    replied
    Belated Happy Birthday Peg

    I get IVIg every two weeks and always schedule it for Friday so I can lay around on Saturday and Sunday. I normally have flu like symptoms: Body ache, fatigue, crankiness, etc.

    I basically get knocked down a few notches. How far I fall depends on where I started.

    If I'm feeling good before treatment, it isn't that bad and I'm usually feeling OK by Saturday night.

    If I'm tired or feeling run down, then it hits me pretty hard and I can still be out of it on Monday.

    Leave a comment:


  • Peg B
    replied
    Have to reply to my own post

    Hi,

    Today I crashed. I could not go to the gym or sit or lie comfortably. As I said about 26 hours ago, Tues was my birthday and so we postponed my IVIG until tomorrow (Ok I am still on Wed. My ivig is Thurs) I finally took some pain pills one vicodine and later two advil. I fell asleep for about an hour and laid in bed for about 3 hours and I am just about ready to go back. Is this "crashing," being drained of energy just part of MMN? If you experience it, how would you describe it. I feel like a vampire.:Take good care, Peg
    Last edited by Peg B; 10-19-2011, 10:53 PM. Reason: left out a word

    Leave a comment:


  • Peg B
    replied
    I'm Back

    HI All,

    This site changed in the summer and apparently I did not get the memo. I have looked and looked and could not find you anywhere. Well today is my birthday and I got a birthday card from Brain Talk Communities, so I found you again. I am so happy about that and wish you all well. What a nice birthday surprise for me, to get back here!

    As for energy it took me 2 years of moving very slowly and increasing slowly to work out a walking routine at the gym. I can walk pretty fast enough to sweat for 25 minutes 3 to 4 times a week. Sometimes I need a pain pill but not very often. The more I do it the better I feel. I would like to work up to 30 minutes maximum. It is a great feeling because I feel the same as when I played sports. I hated working it up so slowly but I had to start with less than 10 minutes in the begining and never run. I get IVIG every 3 weeks and in fact it was due today but we postponed it until Thurs. I can feel the tiredness and did not "walk" today, but I know both things are a God send and have both have helped me much. I also lift some weights started with 3 or 5 pounds. It all helps. Best Wishes, Peg
    Last edited by Peg B; 10-18-2011, 05:36 PM. Reason: typo

    Leave a comment:


  • powder pig russ
    replied
    I want (and need) to advance my empirical belief that the value and power of the mind is much greater to heal minds and bodies than anything ever delivered to me in pill form (sorry Matrix fans). A person's changed and changing belief system can eliminate shiploads of self-doubt and uncertainty and many other ails that may befall us.

    On the other hand, I certainly have gained personal benefit on occasion from scripted anti-depressants and continue to advocate for them in limited duration and quantity (for most of us). However, I also know they are very strong and are often not dispensed to patients' long-term benefit.

    Pills can give nudges to our emotional states sufficient to effect needed change and the same goes for other "helpers" as I have extolled. Maybe I just one of those "weak" ones who takes help from a pill once in a while so I won't be ashamed to accept help for an imperfect body (or mind) parsing an imperfect world. Note too that I also will imbibe in a good meditation/prayer first and last because it is cheaper, more easily dispensed (no refills or dr. authorizations required) and more easily consumed with fewer negative side-effects.

    Russ
    Last edited by powder pig russ; 09-13-2011, 02:37 PM.

    Leave a comment:


  • starlight
    replied
    thanks joy, everyone is different, she was really just trying to put it into perspective for me, right at that moment, that yes what i have sucks, but there are worse things that others (including her) have to deal with. i happen to have a very high pain tolerance and am quite stubborn to boot!

    we try and balance each other out and remain as positive as we can, for me attitude determines alot of my emotional well being with this disease. Unfortunately, I saw pretty much no results with the IVIg, and am back where I started, which is okay, I have accepted it and will continue on as I have been. My other option is Rituxan, but I'm not sure I want to go there....

    take care,
    Linna

    Leave a comment:


  • joy
    replied
    i wanted to come back and add tho, that there is no justrifying a person's feelings sometimes. cancer or no, pain etc is just that. and not everyone is the same. for instance right now, hubby is in bed and has either a bladder/kidney infection or needs to pass stones. guess the strongest thing he will take, aleve. me, no way, it requires something else to keep me moving at all everyday. i hope you feel better soon.

    Leave a comment:


  • joy
    replied
    things have slowed down far to much for me as my muscles and all are definetly decling as it gets harder to get up and do anything. and i definitely am dreading the cold this winter. i often wished that i was a candidate for ivig that people with some types ofneuropathy get but my neuro said no. i have heard where it helps some and others nothing. i always hope for great results when i read that others get to try it. that and that they have insurance or money enough to try and no hassles with doing so. i have friends with cancer and the battle for treatment is very draining for some. how awful is what i think for those individuals.

    .
    Last edited by joy; 09-11-2011, 08:01 AM.

    Leave a comment:


  • starlight
    replied
    Thanks Joy! Russ.... good to hear from you, unfortunately I hit a wall on Thursday, sick as a dog, but finished out the 5 day course at a slower infusion rate which helped. So far I have not found any difference other than not being so damned tired and a slight reduction in the shaking in my hands. I would be very interested to hear about your experience, I wondered how you were doing. Glad you are regaining strength and what you did helped you!
    Mailman, depression does rear its ugly head once in a while, I just have my pity party and move on. I prefer not to take pills if I can help it, and try to just get past it the best i can. works for me so far, but who knows what the future holds. My mom put it in perspective for me one day after I saw my neuro who confirmed I was declining, "It's not cancer".... mind you this is coming from the strongest woman I know, she has had 2 different bouts of breast cancer, lymphoma, 2 knees replaced, 2 hips replaced, and on and on.... we draw strength from each other, and somehow get through it. It is what it is....

    I still work too many hours, and since my vacation in August have been slowing down, going in later, leaving earlier. I have a high stress job, and am trying hard to not let it affect me too much.

    glad to hear from you guys!!
    take care~Linna

    Leave a comment:


  • powder pig russ
    replied
    Depression's a drag. I too felt "lazy" and just accepted it because I felt that my body could no longer maintain the pace of 21st century living. I tell people that if it looks like I am doing nothing, it's because I am - which can be hard work at times for a mind that's intent on going 900,000 MPH.
    "Slow down" was the best bit of advice a local neuro gave me. If that doesn't suit you ask your doc for a script for some 5 mg tabs of Dexedrine for the occasional lift out of the slow lane. If he grumbles about giving it to you, tell him it's for palliative care use.
    Russ

    Leave a comment:


  • mailman
    replied
    Just wondering if anyone has had depression with MNN. I have been on a pill, it helps a little but I need something to give more energy and to be perky again. I feel lazy and do not like it

    Leave a comment:


  • powder pig russ
    replied
    Linna
    I'm here too - lurking....
    I'm curious to know now if you've gotten a positive "hit" from your latest attempt with IVIg. If it's going to kick in, I'd think it'd be doing its job already. Well?
    I had a very rewarding experience this summer with a non-traditional therapeutic regimen. I'll divulge more later when I have more 'data' in but I can say that I feel much better both mentally and physically and appear to be regaining strength.
    Russ

    Leave a comment:


  • joy
    replied
    I hope something helps you as well. I don't have your diagnosis. I went to Mayo in 02 hoping that they would find something to help me with my idiopathic peripheral neuropathy diagnosis that i went with. But no luck so it still continues and nerves are dying off still. I have other health problems so I usually post on Emotinal Supposrt forum. There is a good group of people there with varied health issues. I hope something helps you and hope to see more of you around.
    Last edited by joy; 08-30-2011, 08:03 PM.

    Leave a comment:


  • starlight
    started a topic hello out there.... aka where the heck is everyone?

    hello out there.... aka where the heck is everyone?

    Hi!

    Where is everyone? there doesnt seem to be much, if any activity on here.... ??

    day 2 of 5 down for my Ivig, 3 more to go! I was diagnosed officially in 2006, however had symptoms for almost 4 yrs before I was finally diagnosed at Mayo clinic. I tried IVIg twice (protocol was interupted due to insurance issues) without success, but after reviewing my records and with new symptoms in my feet, my new neurologist wanted to give it a shot. So here I am, day 2 done, with 3 more to go, then will follow up with him to determine if it has helped at all. so far, no side effects thankfully, and will keep my fingers crossed this helps. :)

    take care,
    Linna
Working...
X