Ok, so I’m kinda confused. I spent the first four months of this year in the hospital and have been diagnosed with cidp. However now after a long hard grueling therapy and a huge mental battle I feel I’m in the best condition in my life other than a constant tingling in my toes .I have been receiving ivig treatments every two weeks and just now went to three weeks and I continue to feel stronger every day however I am constantly reminded that over time this will get worse. I’m a fact person and so far no one has been able to tell me exactly why or how I all the sudden went from being perfectly healthy to paralyzed and going into respiratory failure and almost dying. So can someone please help me understand what to expect from this because I just want to go back to work and live a normal life.
Hi there I’m glad your feeling better I was diagnosed with CIDP 2 years ago and still struggle to this day with everyday living I was having ivig infusions every month for the past 18 months but in the end they weren’t working so now I’ve started Rituxamab infusions and I’m no where near so fatigued as I once was. My neurologist has said I got CIDP from a flu shot within 2 weeks of having the needle I was at work one night when I suffered stroke like symptoms and spent the next month in hospital although I never got a proper diagnosis until the following year did you have any vaccinations pryer to becoming ill?
Every case of CIDP seems have some elements in common, but at least as many that are very different. I was diagnosed 5 years ago, and once we “dialed in” my IVig (35 mg Gamunex-C once/week) my symptoms have not progressed, and even receded a bit from their most severe. So at least in my case, it has not been true that with the proper dosage infusion treatments, things are destined to get worse. Spontaneous remission is a birthright for all of us, so hang in there until it is your turn!
Nothing about having CIDP is normal. Everyone has different symptoms and levels of the disease. I’ve had it for 2 years and I can no longer work due to the excruciating pain I feel in my legs. I need a walker and have lose the use of my bladder all due to CIDP. I also receive IVIG every month and have managed to stay a level of functioning for a while now. I guess what I’m trying to say is that no one can tell you what will come next because quite frankly, no one knows what the future holds. You could be fine for a long time and one day have a relapse. You have to take each day as they come and not worry about when or what will come and enjoy that you are feeling great with this really crappy disease. I hope you can return to work soon and continue to feel good.
As others have said, everyone is different. I received more info from this website then from my dr. I am 1.5 years with CIDP, two relapses and 7 months of plasmapheresis had to stop bc of a blood infection and then started taking Cellcept Which has kept it at bay so far. I have severe fatigue days and limited strength and endurance along with numbness over most of my body. Staying in shape will be so beneficial for you l, keep at it and I hope all continues to go well.
I hope to run another marathon one day.
See that is what confuses me me than anything I’m a person who like facts and the fact that no Dr can tell me why all the sudden at the he age of 37 all of this happened and now that I’m feeling like everything is going to be ok I keep hearing it will get worse. I’m not trying to be a buzz kill because I’m truly happy to be up and walking again but I’m deathly affraid of what can happen again if I go untreated because I saw how rapidly it can effect my entire body. I don’t know I guess it’s really nice that I found this site and I thank you all for listening because no one else not even my Dr understands just what it’s like to lay there and watch as your body dies or the feeling of as I described as being taised contstantly. Thank you all for helping me vent and keep telling yourselves what I tell myself and that is your body is a remarkable thing it has the ability to heal itself and it’s only as strong as you make it
As others have said, no one knows what comes next. Everyone is different. Your sudden and traumatic onset seems a bit unusual for cidp. I’m nine years in and I can only walk with a walker. I have stopped ivig - bc I had it for so many years and symptoms worsened anyway. I had 6 months of chemo (cytoxan high dose) in 2015 and it just gave me additional medical issues that persist still. Neuro wants me to try pulse steroids, but steroids scare me. May try them in desperation. I guess the “good news” is that it took nine years to get to where I can’t walk w/o a walker.
I do not have CIDP; however I was diagnosed with GBS over twenty-two years ago. My illness was serious enough to place me in the hospital from Jan 7, 1996 to May 17, 1996 paralyzed and unable to speak. GBS destroys the my- lien in the nerves system thus paralyzing you. It was a battle however I am grateful to be alive. Hey, here is a video of what CIDP does from the gbs-cidp.org site. https://www.gbs-cidp.org/cidp/ Simply, click on it. Let me know if this answered your questions.
Rayjay, I will pray you continue to improve and gain strength. My only advice is to try not to question the future and just live every day as though it is the last one you will be able to enjoy. I hope and pray the day never comes that you wish for death, because there are plenty of CIDP sufferers who do - my husband included. Stay connected with your neurologist and don’t ignore any weird twinge or symptom, even if it comes years from now.
Jacobs, I second that thought of living each day to the fullest. Why fret about something that may never happen. It will only rob you of the joy and health you have today. I went from marathons to bed ridden to now being able to jog one lap around a track. It’s not much compared to a marathon but it’s everything compared to bed ridden.
I have learned to be content with what I have this day.
You are all such an inspiration and so encouraging. You are taking the time to reach out to someone else, whether it is to ask for help or to offer comfort or a different perspective. I hope you find the ability to laugh at something every day. Some days it may be dark humor, but my husband and I try to always laugh - things are tough now, but yesterday’s laugh was simply because I spilled more of his dinner on him than he would have done so himself without my help. You are all in my thoughts and prayers, and I wish you peace - and something to laugh about.