Room for one more newbie?

    • Anonymous
      March 20, 2007 at 12:05 pm

      Hi all. First, I want to thank you all for being here. I’ve gotten some valuable information from these boards, so I thought telling my story might help someone, too. I’ll try to be brief.

      I first started experiencing weakness about 2 years ago. Had some early tests, but never pursued a full neuro evaluation. The weakness would come and go (“relapsing/remitting”) so I convinced myself that (1) it was manageable and (2) it would probably “go” for good eventually, like maybe it was being caused by a virus. OK, I was in denial. After a year of dealing with it and having worse and worse periods of weakness, I finally went to a different neuro and began the entire diagnostic process — emg/ncv, blood tests galore, muscle and nerve biopsy. I was finally diagnosed in July with CIDP and was hospitalized for 3 days of IVIG. It was miraculous. Within a week I was climbing stairs without pulling on the rail, getting out of low seats, walking on grass — all stuff that I couldn’t do by that time.

      I’m getting IVIG every 5 weeks now and the weakness is gone. I still fatigue easily and have numbness in my feet, shooting pains (mostly in my feet), muscle twitches (mostly in legs, but lately in eyelids), and an increasingly present hand tremor (right now I’m having trouble typing, but I didn’t get enough sleep last night and that always makes all my symptoms worse).

      I am 46 years old, married, have an 11 year old son, and work full time as an editor — amazingly, I never had to stop working, although it was incredibly hard sometimes and I was always in fear of being unable to get myself up (got stuck in my airline seat once — a terrible experience). My husband and son were and still are great in supporting me through this. I also am diagnosed clinically depressed for years now, so even though the depression meds control that, this condition can sometimes get me really down. It’s difficult for me to accept the fact that I’m going to have this for the rest of my life. I just pray that the IVIG continues to work so that I don’t have to live in fear again.

      So much for being brief, although actually there’s lots more, I’ll just spare you for now. Thank you all again — for being here and for listening.

      Caryn

    • Anonymous
      March 20, 2007 at 12:42 pm

      Caryn, Glad to have you join us. I havn’t been here long either(since 2/07) but I’ll tell you what if it weren’t for me finding this place I’d probably be in a nut house by now. Each and every day I come to my second home to see how everyone is doing and to get more info. It really does help and just knowing that others care and support you is a big help. Hang in there and keep your head held high. Also know we are all here for you whenever you need us for whatever. God bless and know your in our thoughts and prayers.:D

    • Anonymous
      March 20, 2007 at 12:47 pm

      Hi Caryn and welcome to “The Family” 🙂 I am pleased that you have already found some help by just reading but now we have the opportunity to get to know you! I have GBS residuals so can’t help with your CIDP questions, but others will be along soon. Again, welcome.

    • Anonymous
      March 20, 2007 at 1:47 pm

      Welcome, Caryn, we always have room for one more.:D

      This a wonderful community of caring individuals — many of us have cidp and can relate to what you’re going through — many are caregivers of us with cidp.

      Welcome!!!:)

    • Anonymous
      March 20, 2007 at 3:02 pm

      Caryn,

      Welcome to the family, it is nice to meet you. We are here to help however we can.

      Jerimy

    • Anonymous
      March 20, 2007 at 9:32 pm

      Caryn,
      Welcome to the family. If you have any questions, post them and some one should be able to answer them.

      Don’t worry about the future. Just take one day at a time and remember to slow down a bit, you will tire quickly. Overdoing exercise will not help, it will actually harm you. The problem is with the nerves, not the muscles.

      Besides tomorrow’s problems have a way of working themselves out

    • Anonymous
      March 20, 2007 at 11:23 pm

      Caryn,

      Thanks for sharing your story. I am also new. I am 41. I have one great helpful and caring 13 year old son and a fantastic supportive husband.

      Your symptoms sound the same as mine, even the eye twitch! You are the first person to say anything about that. I thought I was going crazy…didn’t know if it was from CIPD or reaction to the gabepentin. I also suffered for a couple of years. I was caring for my mother who was terminal with cancer. We moved her into our tiny house and things were very stressful. She passed away last year at the young age of 58.

      I thought the pain in my feet was from walking the hospital floors. One day I woke up and my feet felt like plastic, then my toes wouldn’t move. They are, I guess, paralyzed. I can feel them to touch or to move them with my hands. I went through all the tests as well including the nerve biopsy that was done Dec 20.

      My doctor confirmed CIPD last month and I have gone for one set of IVIG. Two days, 10 bottles of IVIG. I am taking 1800mg of gabepentin a day as well as norytripline at night. I don’t know what the next step is…my doctor told me to come and see him when I start to feel that I might need more IVIG. How will I know? :confused:

    • Anonymous
      March 21, 2007 at 11:56 am

      [QUOTE=Rhonda]Caryn,

      Thanks for sharing your story. I am also new. I am 41. I have one great helpful and caring 13 year old son and a fantastic supportive husband.

      Your symptoms sound the same as mine, even the eye twitch! You are the first person to say anything about that. I thought I was going crazy…didn’t know if it was from CIPD or reaction to the gabepentin. I also suffered for a couple of years. I was caring for my mother who was terminal with cancer. We moved her into our tiny house and things were very stressful. She passed away last year at the young age of 58.

      I thought the pain in my feet was from walking the hospital floors. One day I woke up and my feet felt like plastic, then my toes wouldn’t move. They are, I guess, paralyzed. I can feel them to touch or to move them with my hands. I went through all the tests as well including the nerve biopsy that was done Dec 20.

      My doctor confirmed CIPD last month and I have gone for one set of IVIG. Two days, 10 bottles of IVIG. I am taking 1800mg of gabepentin a day as well as norytripline at night. I don’t know what the next step is…my doctor told me to come and see him when I start to feel that I might need more IVIG. How will I know? :confused:[/QUOTE]

      Rhonda,
      I’m new to these boards, so I hope I’m doing this right. Right now, IVIG is the only med I’m getting specifically for CIDP. I also take clonazepam (sedative) most nights since I don’t usually sleep well. After my first course of IVIG, the neurologist who ordered the treatment (not my regular neuro but the principal of their practice) told me to see my neuro in 2 weeks to follow up, and to have her schedule a second treatment for 4 weeks after the first (he said it should be no less than 3 weeks later and no more than 6 weeks). I had a few more treatments 4 weeks apart (one infusion each time, not sure of the dose, sorry). Then tried 6 week intervals, but that was a bit hard since symptoms started coming back. So I’ve been on 5 week intervals for the last few months. If the IVIG is working for you, my understanding is that it is important to get it regularly, with the goal being that your symptoms don’t return (or only very mildly) between treatments. I would schedule a follow up with your neuro before symptoms return and try to get him/her to schedule regular treatments. I wouldn’t wait until you “think you need more”, which I take to mean when your symptoms return. There’s no need for you to suffer unnecessarily.

      Hope this info helps. Take care,
      Caryn

      PS. The eye twitch is a somewhat recent symptom for me. Doesn’t happen all the time, but it’s annoying when it does. I assume it is CIDP-related since I didn’t have it (or any other twitches, for that matter) before the disease.

    • Anonymous
      March 21, 2007 at 11:58 am

      Thanks to everyone for the warm welcome. I’m sure you’ll be hearing from me again. This condition is not a static one!
      Caryn

    • Anonymous
      March 27, 2007 at 8:22 pm

      Hi Caryn and Rhonda

      I’m 42 with 12 and 14 yr old sons, and a wonderful husband! I was dxd with CIDP last spring, and I’ve had 3 loading doses of IVIG. At this point, I’m 15 weeks out from my last treatment, and the pings and stuff are starting to come back. Like Caryn’s doctors, my neuro has instructed me to call him when I need another treatment. Its kind of odd, because I don’t know how far to let my symptoms go. And I was also just dxd with Horners Syndrome this week. But really, I feel pretty good! I am worn out by Fridays — I work fulltime as an engineer, and I pace myself on weekends so I don’t overdue it.

      Anyway, its nice to “meet” people on the board in the same place as me!

      Helen

    • Anonymous
      March 28, 2007 at 12:24 pm

      [QUOTE=Meadow]Hi Caryn and Rhonda

      I’m 42 with 12 and 14 yr old sons, and a wonderful husband! I was dxd with CIDP last spring, and I’ve had 3 loading doses of IVIG. At this point, I’m 15 weeks out from my last treatment, and the pings and stuff are starting to come back. Like Caryn’s doctors, my neuro has instructed me to call him when I need another treatment. Its kind of odd, because I don’t know how far to let my symptoms go. And I was also just dxd with Horners Syndrome this week. But really, I feel pretty good! I am worn out by Fridays — I work fulltime as an engineer, and I pace myself on weekends so I don’t overdue it.

      Anyway, its nice to “meet” people on the board in the same place as me!

      Helen[/QUOTE]

      Hi Helen.
      I know what you mean about Fridays. I always have such grand plans for accomplishing things on the weekends, but most of the time I just wind up re-charging. Oh well, a messy house isn’t the worst thing in the world!
      -Caryn

    • Anonymous
      March 28, 2007 at 6:57 pm

      Welcome! I’m also rather new to this forum, but everytime I visit I learn something or get encouraged. I agree that you shouldn’t wait until you start symptoms. We go down too fast! Right now I am starting symptoms and am hoping I haven’t waited too long for next treatment (Monday 4/2). I was doing really well for a few months because I had regularly scheduled IVIG (3 days each time) and I wasn’t symptomatic in-between – but my neuro and I experimented and I only had 2 treatments at the beginning of March. BIG MISTAKE! I started symptoms in 20 days – so am going back to 3 treatments a month for awhile. I have just started noticing random pains – my neuro suggested liquid B complex. She said for some reason the liquid version helps alleviate the pain. Just started it, so we’ll see. The only other meds I take are OTC Tylenol, vitamins, and calcium. So far, Benadryl at night helps me sleep. Hang in there! This is an emotionally debilitating, as well as physically debilitating disease, so give yourself a break! Everyone on this forum is pulling for you! Good luck and good health!