Gets me mad when………

    • Anonymous
      September 25, 2007 at 9:28 pm

      Hi all,

      I am not new on here but posted a couple of years ago but forgot my password and login code LOL. I am post 8 years and counting now. I go out and people look at me like what is wrong with you. I am doing good for now but if they would have seen me last December when I couldn’t pick up a 13 ounce bird or even climb one step. Lately I am getting anabolic steroids and it seams to be helping with strength. What bothers me is this a false strength. I noticed when I get into the last week before I get my shot again I starting get weaker again. I know steroids will cause other problems if you get cancer. I am still considered a quad with the last emg. Some of my readings showed NR yet. I know I have permanent nerve damage and will never be the same. It is a constant struggle with me with strength. Once or twice a year I get really weak almost to the point of a wheelchair again. My neuro tells me chronic guillian barre or polyradicular disease. My drop feet are not a problem right now but I have problems feeling my hands and feet yet again. I am just venting because of other people looking at me. I was in a different doctors office the other day and was at the counter and showed my medicare card and a gentleman looked at me and said (another one using the system). I looked at him and said I would gladly trade my 38 pills a day and being normal then being able not feeling my hands and feet, being in a wheelchair, not being able to walk out of my house for months on end. I then told him you can’t judge a book by the cover and until he walked a mile in my shoes he should keep his trap shut. Im just venting sorry.

      Thanks

      John

    • Anonymous
      September 25, 2007 at 9:39 pm

      Oh my God!!!!! Mad doesn’t even cover what I felt just reading your post. I could use some very choice words. I guess that just hit a very raw nerve as I too get the “But you look really good”. I just want to say, @#^&%(@!! you, do you know what I have to do just to get here? Oh it’s just so frustrating. I’m sorry that happen and I really feel sorry for that dude because one day he will suffer. Thanks for letting [I]me[/I] vent.
      Linda

    • Anonymous
      September 25, 2007 at 10:09 pm

      John,

      It is infurating, I agree with you. I’m not sure what I would have done, probably been so shocked that I wouldnt have been able to say something for a few minutes then kicked myself for not coming up with the right comment (or something more physical).

      Sounds to me you do have CIDP, specially if the steroids are helping, then they taper off before getting another shot. Glad you posted, come back and talk often – it helps

    • Anonymous
      September 25, 2007 at 11:13 pm

      Alison,

      The steroids does help sometimes but not all the time. I can take 100 mg a day of prednisone but still have no strength. It is really frustrating because of all the side affects of the drugs im taking. They are putting me back on neurotrin again and something other drugs. My protien in my spinal fluid is still out of whack and I do a spinal tap two to three times a year. My numbers have never been close to norm.

    • Anonymous
      September 25, 2007 at 11:32 pm

      John If you have CIDP you should be on IVIG. Especially if your numbers of your spinal fluids are out of whack then that means the disease is still progressing. Get IVIG as soon as possible.

      Sue

    • Anonymous
      September 25, 2007 at 11:37 pm

      Hi Sue,

      I get them monthly and it seems to help for a couple of days then goes away just like decadron shots. I am frustrated just like my neuro is. He has never seen anything like this. I am diagnosed with chronic GBS. My last blood work also showed signs of muscle breakdown again. Alot of my problems now is just like when I first got GBS in 98. Muscle twitching picking up, shooting pains, numbness in extremities, face starting to feel numb again. My fear is being back in the wheelchair again but I beat it once and I will again if it happens.

      John

    • Anonymous
      September 26, 2007 at 8:08 am

      John,

      I’m not sure if you know ….. chronic GBS is CIDP, unfortunately many have to have IVIg every month to help them. It just seems like a vicious circle. Are you able to go to Physical Therapy?

    • Dawn Kevies mom
      September 26, 2007 at 10:32 am

      Hi John,
      Sorry you are having so many problems with butt head people. My son gets the same kind of crap from of all places, my husbands family. Just the other week, he tripped and was told to stop acting silly! You can just imagine what I said before I left!

      Anyway, I have no experience other than what I read from others post. But some people have had better results from chemo drugs as they call them. Maybe you can look on Pam H ‘s member list name, I think she went this route. Also, maybe you could look into other variants, they get different treatments. Has your doc ever discussed a more frequent dose of ivig? How much do you recieve? (grams) My son is 10 y/0 and weighs 110 plds. he recieved 95 grams over three days.

      I hope you have a nice day today and that you do not run into any more insensitive butt faces for a long time.

      Sincerely,
      Dawn Kevies mom 😮

    • Anonymous
      September 26, 2007 at 11:30 pm

      Hi Dawns mom,

      I have done that many times in public and people look at like what the heck are you doing. I have been on cytoxin and now cellcept. Just one of my many drugs I am on. I get 30 mg IVIG monthly and if I am really bad once a week sometimes twice a week. My neuro is a good one and isn’t afraid to try things. I know about the side affects of the drugs are terrible on the body but oh well.

      Thanks

      John

    • Anonymous
      September 27, 2007 at 11:28 am

      Hello John, I am a fellow Nebraska (Husker fan)>living in the northeast corner. Where are you? cause I feel I get alot of respect and help from folks in the clinic and the stores. Maybe cause I am an old woman??
      I have been suffering for two years, dx in May 06, then Neuro was gone and I have been flipping around trying to find a new, good one. Well, I think this new Dr. and I are on track. I am on 500g Lyrica 2 times a day and 2 60g Cymbalta (that keeps me smiling). Now in mid Oct. i will get 5 days of IVIG and then once a month. This past year & 1/2 it has been hit and miss for treatments. I use a power wheel chair all the time, but now have to concentrate my energy to getting back up on my walker and get those leg muscles working. My fingers and legs from knees down are numb. Will post on how the new treatment works. Keep fighting, it takes time. One gal on here got so tired of questions, she started telling people she was in a car wreck, a much easier explanation. Hope we both find a treatment plan.

      Regina