Update one year after diagnosis with CIDP

    • March 19, 2012 at 10:04 pm

      My husband was diagnosed with CIDP February 2011. He declined until about May. He started improvment after the 5th week of weekly high dose IVIG treatments. Initially he had 5 IVIG treatments followed by 5 PE. He spent 3 1/2 months in a nursing home and was sent home in a wheelchair once he was able to safely transfer to his wheelchair. His legs were completely paralyzed. Hands were not much better. He couldn’t hold silverware or open up anything.

      This is a guy who skiied every weekend and paddled during the off season. Skiing was his passion. He is on ski patrol at Mt. Baker and has been for 20+ years. So, it was quite a blow.

      It has been one long year. But, here is the update. He skiied this weekend. We have a friend who teaches adaptive skiing. Marshall skiied for 3 hours with outrigger poles. He could not stop smiling when he got home. I don’t care if he ever works again, I just wanted him to be able to ski. We are all smiling this week and just keeping our fingers crossed that we don’t see a relapse.

      So, anyone who is just starting on this road, don’t dispare. There is a future. He still wears afo’s. But if this is as good as it gets, it is great!

    • March 20, 2012 at 2:01 am

      That is great news!!! This brought tears to my eyes!! I am so happy for yall, thank you for taking the time to post this on here, it really helps to hear success stories!! Wishing yall the best and again thank you and so happy for yall!

    • March 22, 2012 at 3:19 am

      great news 🙂 A skiier myself—-I understand the desire to get back to it. i was diagnosed with cidp in june of 2009. Have not been able to get back to skiing yet due to numbness/weakness in feet and poor balance :(—-but I am still holding out hope that it will happen. How high do you mean when you say “high dose ” ivig ? higher than the 2gm/kg loading dose?

    • Anonymous
      March 31, 2012 at 2:26 am

      That is a heart warming story Patty. Just remember to make sure he takes rest periods and doesn’t overdo things. I will think of him when I look out at Mt. Baker in the distance.

    • Anonymous
      April 2, 2012 at 3:06 am

      PattysOO: I am PattyO also (and I guess we have a little more in common than our names,huh?) I think I have just now re-read your post a dozen times. IS IT REALLY TRUE – WAS YOUR HUSBAND UP ON TWO LEGS? SKIING? yes with adaptive poles but SKIING??? I have tumbled down an Alice In Wonderland-CIDP hole, going from a competitive half marathoner (and sometime marathoner) and fitness nut — survival camp for moms of teenaged, adorable, loving and highly energetic boys lol — to someone who takes three steps, has to stop and fingernail the palms of my hands so as not to cry from the pain in my feet. I have bruises up and down my thighs from the same… the agony of the nerve pain is unbearable. I had gotten the pain somewhat under control with ivig via iv, but unfortunately developed a series of allergies/negative side effects that take ivig via iv out of the picture, I don’t qualify for the new sub q trial. And so my motorized scooter is plugged in; now considering adaptive equipment for the keyboard/fingers are having trouble and for the bladder – ugg! depends, really? A man must have designed them (honestly – have you seen them??)- and the swallowing – I have been instructed by my dr never to eat alone again. Gone are the days of dinner parties filled with laugher, good food and great friends. Now it’s onto soft foods, taken in small quantities all the while being watched like a hawk from my increasingly nervous family.

      To read the story of your husband has given me the determination to try to type this message – which once upon a time would have taken a mere minute or so; this has been a labor of hope and perserverance that has taken more than a half hour of typos, corrections, and one finger clicking.
      I will keep the mental image of your husband – on the slopes – letting the wind hit his face — and not the tears of frustration – with a smile to last a lifetime. That image will get me out of bed tomorrow morning …. you never know….it just might be my day to smile!

      **Thanks for the happy story and please, go tell it on the mountain of this CIDP world – we need this good news!!

    • Anonymous
      April 2, 2012 at 10:51 pm

      PattyO you will get there too. I don’t understand why your doctor can’t prescribe the subcutaneous IVIG. Others over the years here on the forum have had it–well before it was officially sanctioned for CIDP. Sounds like it would be an excellent option for you. Still have those dinner parties and enjoy your friends. That is one thing I have learned from the ALS forum–you can still do everything you did before, but just in a different way. You are still that dynamo marathoner personality and great mom who happens to have CIDP which is treatable and you will get better like Marshall.

    • Anonymous
      April 4, 2012 at 10:50 am

      I am glad to read such a succes story, especially because my disease started a year ago as well. Unfortunately it took me half a year to get the diagnosis. I am on dexamethason (a kind of prednison) now and the only good thing is that I did not get worse a lot. Having read a lot of stories on this forum I think in the USA is a bit more experience than in Europe / the Netherlands, but of course I am not sure about that. And I must say that I suffer from the rare variant of this rare disease: MADSAM / Lewis-Sumner / Multifocal CIDP. The main problems are in my right foot and left hand, some problems in my right hand but it slowly increases to my lower leg and lower arms. So I really would like to get into contact with other patients who suffer from this variant. Especially to learn something about what my future will look like.
      Hope to read from you
      Kind regards

    • Anonymous
      April 4, 2012 at 7:30 pm

      Hi Willem,
      Welcome. My husband has MADSAM as well. He went through tough times getting his diagnosis too. He was an airline pilot when it struck and he had trouble with the cockpit toggle switches. Initially the neurologist said it was Carpal Tunnel and he had nerve release surgery. Things went downhill from there. Hubby has an atrophied right hand and drop foot. Had to retire from flying. Got to the point where he could not use eating utensils or hold a coffee cup. Eventually he got a second opinion with a neurologist specializing in neuromuscular diseases. Started on IVIG in 2007. Of course the damage cannot be undone, but the IVIG holds off further damage. He has lots of fatigue, unsteady balance, diminished hand grip etc. etc. But we do everything we used to (I have secondary progressive MS with vision and balance issues etc). We went back to ice skating this winter and fall a lot but at least we get out and do it. We have learned not to over exercise as that causes relapse, but we have learned to participate in all life has to offer and not let the disease become our identity. This happened in the beginning as it is shocking to get a diagnosis of such a rare thing, and hubby lost his career because of misdiagnosis and no treatment for 3 years. But we are blessed that he gets treatment that prevents further deterioration. Hubby has deteriorated a bit over the past 5 years ie. poorer balance and just a very slow decline, but I think the outlook overall is pretty good. Much better than we feared in the beginning. If you have any questions, please ask. Remain positive and don’t become your illness. My neurologist told me that years ago and it is so true.

    • Anonymous
      April 5, 2012 at 4:06 pm

      Hi Laurel
      Thank you very much for this elaborate description, written on the other topic as well.
      It really helps me to figure out what to do and what to expect.
      And your advise is very good as well: not to replace my identity for my disease.
      I had to end my career as well, which makes me very sad.
      The company-doctor (is this an English word?) expects me never to come back to work.
      Fortunately I am well insured, and my wife has a fulltime job, so no worries about income so far.
      I would like to keep in touch and I am thankfull for this organisation.