Your recovery, how's it going?

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This topic contains 7 replies, has 7 voices, and was last updated by  Surfnyc 4 months ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #113996

    BryanF
    Participant

    Sometimes, with this disease, I think it helps to describe your symptoms and treatment.It definitely helps me to compare my recovery with others and see where I stand.

    To that end, a quick synopsis of where you are today and how long you’ve had CIDP.

    I’ve been treated now for 15 months. Got a new doctor last May, and I receive 200mg of IVIg monthly and he’s tapering my original prednisone prescription. I should be finally rid of steroids in 2 weeks.

    Where am I at? My arm, hands, and fingers feel great. If I can be so bold, I’m going to call them in remission!

    What frustrates still, are my feet and legs. My legs still feel weak and my feet, especially my heels, hurt. It hurts to walk at times. In this part of my recovery, I feel like I’ve stalled.

    Finally, fatigue. While I’ve made great strides, at the end of the day, I’m exhausted. I regularly go to bed at 7:30 or 8pm. While this is much better that it was, it once again feels like I’ve stalled out.

    #113997

    Twiggy
    Participant

    Although I am getting better (my nerve conduction studies are now within ‘normal range’) it’s frustrating that a cluster of very unpleasant symptoms persist. I have CISP and am in a lot of pain much of the time in my feet and my head. In cases where there is improvement and treatment assists, I think it’s difficult to get chaemotherapy trestment which could push it into remission. Does anyone have any experience of this type of treatment for CIDP/CIDP? I have been receiving conventional treatment since December 2016 (I have had IVIg, been on steroids and now have regular PE). The tiredness is also a feature and I need much more rest now. I just don’t have the stamina. There are days when I get home from work as well as other times and have to go straight to bed so it still very much affects my quality of life

    Regards

    #113999

    fellowcidpguy
    Participant

    Hi Bryan,

    Always look forward to hearing from you. By the way, are you in Cincy? I am a Buckeye by birth. Grew up in a small town near Lima in northwest Ohio. Have family in Cincy and Columbus. Been in Texas over 30 years but still a Buckeye fan. Here is my 15 month report. Doing pretty well like you. On IVIg once every 3 weeks instead of 2 and seems to be fine. Never had steroids. However, after an infusion, I used to get a boost, though not much of one, now the first week after an infusion is the worst. Stubborn headache (controlled by Advil) and more leg/ankle symptoms, but again nothing too bad. The next 2 weeks are pretty good with some days like I don’t even have CIPD! The lyrica continues to keep the nerve activity at bay. I too am pretty zonked at the end of the day but I also changed my work hours to 6 a.m. to 3 p.m. so I get home early and beat the horrible Houston traffic as driving can still bother me sometimes. I have gotten used to driving without my shoes on and that helps my feet feel better. I haven’t ever heard you mention inflammation, which is still one of my symptoms but nothing like it was in the beginning. I think I am and have been in the “stable” category for quite a while, which my neuro says is the goal. I would rather he tell me there is research being done every day to solve this problem but I will take what I have and just live with it. Others seem to have it much worse. I still fear the word relapse but for now I am keeping that word out of my dictionary:) I need to eat better and loose some belly fat, looks pretty silly on a man that only weighs 145. I feel I am still not strong enough for a major exercise program but hope that will come if I start to feel less tired after a long work day. Take care and thanks for the updates. Jeff

    #114004

    BryanF
    Participant

    Hi Jeff,

    Cincinnati out in the burbs on the west side. I see my Doctor again in May, if the latest boost (3600mg a day) in Gabapentin don’t help, he said we could try Lyrica.

    This disease is so weird. Today, my upper body feels great, but my legs feel weak and my feet are really stiff. I feel like I’m walking like I’m 90!

    I just wish I could get the bottom half of me to get with the program : )

    Hearing about your fatigue and feet gives me perspective. The neurologist in February, said to be patient, as the nerves to the legs and feet are the longest and take the longest time to heal.

    Bryan

    #114021

    Sheba
    Participant

    Since I have been on IVIG Privigen, I have been feeling so much better. I’m finally feeling determined to do things to make myself look pretty.

    #114022

    PeteM
    Participant

    Hi, I’ve had symptoms for 1 1/2 years….soles of my feet mostly, GP had no idea, went to physio for months with no change, back to doc and finally to neurology doc. At this point I was experiencing numbness starting to advance sole of feet became swollen toes don’t touch floor, balance unsteady. Hands are numb… Not good for a woodcarver! At least I can still hold my harmonicas. Numbness progressed, now knees to feet all numb.
    One surprise was the numbness that started at the lower part of the rib cage, ar present I have a circle around my upper chest (a girdle that restricts chest expansion) I fall occasionally, walker and all. Difficult to stand up from prone position even with help as knees are so weak.
    After four MRIs, two CTcans, spinal tap, angiogram (I’m 83 so I guess they’re concerned about my survival of the treatment)
    I see a vascular surgeon April 3 to see about a narrowed artery in my neck that could cause complications during the IVIG. If all goes well I start treatment 11 April just in case, though, I plan on making my house more wheelchair friendly….

    #114024

    cer100
    Participant

    I have been receiving conventional treatment since December 2016 (I have had IVIg, been on steroids and now have regular PE). The tiredness is also a feature and

    Out of curiousity, how frequently is “regular PE” and how many treatments does it consist of?

    #114300

    Surfnyc
    Participant

    I am about 2 years. Tapered 1 x 2 weeks,… then 1 x 3 weeks and now 1 x 4 weeks. I want to see if I can have a remission.

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