Crystal's CIDP Story

I have cidp at my worst I couldn’t walk longer than 10 feet without having to rest, 4 years later after 2 years of infusion and prednisone I feel almost back to normal I do have some days where it’s uncomfortable to talk long distance but for the most part I feal normal everyday. Just want people to see there is hope that you can go back to a normal life if you don’t give up.

You go girl! I am a fellow CIDP fighter with similar symptoms. I'm still working and trying to keep a positive attitude, but it can be a struggle. I've had my ups and downs, I couldn't walk at all without a rollator walker a year ago and was hospitalized a couple of times. By this fall, I was back to riding my bike up to 16 hilly miles. Recently I'v had a bit of a set back and am walking with a cane. I'm not giving up, just like you! Keep on fighting the good fight!

My wife has CIPD and has recently switched to trying Hizentra. She is on week two and we both feel she is back sliding a bit. She has done IVIG for 2 years now and her veins as well are worn out. We wanted to try this before going to the port however as most of you know it seems everything about CIPD is a day to day learning experience. Im her husband of 36 years now and was retired for one month before my wifes symptoms started. I really dont have anyone to share this with so i thought id give this a try. Knowing there are others with similar struggles is helpful yet still depressing.We both still have hope however as a caregiver now i do everything in our household. Much like Crystal..my wife is a fighter as well. God bless all of you Thanks for sharing your journey.

I am a fellow sufferer of this insidious disease. I hate it, it has ruined my life. I was a Dancer a Martial Artist, Runner and a Hang Glider Pilot with 900 hours piloting Planes. I pray desperately for a cure. CIDP I HATE YOU! I WANT MY LIFE BACK!

Greetings from Wales. Thank you, Crystal for sharing your CIDP story. I, also had very slowly developing symptoms, and looking back, they started several years before I retired at the age of 66. A few months after I retired, I reported very odd and unpleasant symptoms to my doctor, and to cut a long story short, following thorough tests at a neurological centre, I was diagnosed with CIDP. Two things which have been of great help: The first help: I have always been a good swimmer, and regular swimming - 1 Kilometer per session - really helps me. I feel fitter in the water than on dry land. In the water, my weakened legs don't have to support my body weight. Also, in the water, I don't have balance problems. On dry land, my balance is quite bad - I can no longer ride a bicycle, and I used to love cycling. The second help: Nordic walking, using proper Nordic Walking poles (not trekking poles, which are different). I often take my poles out with me, even if I don't have to walk far. Nordic walking exercise is beneficial even going to my local bus stop. NW is easy to learn, and you can develop exercises even for the arms, shoulders and lungs. I do my NW on flat even ground. We live on the outskirts of a seaside town that has a 2 mile long promenade, and so that is ideal for NW. NW poles are also useful as disguised walking sticks ! NW helps me to walk properly. With painful, burning legs and numb feet, it is not easy to walk properly unaided, and in order to minimise discomfort when walking, it is easy to lapse into a 'shuffle' . The trouble is, too much 'shuffling' can become the norm as far as the brain is concerned, and shuffling around the place can become automatic even during periods when the legs aren't playing up so much. It is also bad for the whole skeleton, and poor-style asymmetrical shuffling can cause further troubles. Using NW poles can help to prevent you from staying in shuffling mode. They are a great help in maintaining correct walking gait. I am now 71 years of age, and am still swimming and Nordic Walking. Yes, the CIDP is still a hell of a nuisance, particularly the brain fog and the fatigue, which really get me down at times (socialising is difficult) but without the swimming and the Nordic Walking, I would be in a much darker place.

Damn this disease I’m 25 and got a chronic version of this within 3 months destroyed me spread to my cranial nerves suffering deafness and also full body numbness and sensory problems

I was at the neurologist last week. He said I likely have it. It's been over three and a half years and I've gone downhill. I used to power walk to song. I can't do that. I rise out of a chair very slow because my legs are weak, on fire, and my balance is crappy. My toes have been numb for two years and my feet are getting there. My grip is gone. I drop stuff regularly. You mention how your muscles just start flexing all on their own, well my legs, fingers, and shoulders do that...ya, I have it, but I have a 3-4 month wait for nerve conductivity test. I'm a basket case right now

Thank you for sharing crystal!

Without being to downbeat life stopped at 50yrs old, was a sports mad fit man Rugby, Cycling, walking, weights, then 9/12/15 life changed, GBS come into my life, paralysis neck down, being fed washed clothed.. So fast forward now, the last 14 months I knew something was not right with body, muscles wastage, worse fatigue, back and forth too doctors and Neurologist, kept fighting and moaning I want help and answers! So sent to different Neurologist and hospital for EMG test.. Neurologist too me "you have CIDP" and me "I knew it".. Balance terrible, Crutches, stairs steps are hell. 🙁 Anyone new diagnosed get as much information as possible and keep pestering health officials otherwise you be lost in the system.. Regards UK

Thank you for posting this and for sharing your story. I am recently diagnosed and still learning how much of what I have dealt with is not in my head. The memory you spoke of is probably the hardest - well that and exhaustion. This video helped me - and I love how you ended it. The Monty Python reference was perfect! <3

most informative testimony i saw. thank you!

Very inspiring! Thank you Crystal for sharing your story!

Thank you Crystal. With love and respect :)

Excellent presentation. Bless you.

Thank you for sharing your experience with us

I lost my Dad to this on May 13th 2018 to this disease... Diabetic with cortico steroids took out his kidneys with creatin at 11 and urosepsis. while the doc says we did more than what we could.. his death haunts me to blame myself for the guilt of doing less for him... I comfort myself saying his death relieved him of his trouble.

Good on ya crystal, you are such a inspiration, I have CIDP as well, thank you for telling your story mate

Crystal, This video really touched me. I don’t have health problems and when you said “I was cocky about my health” that really struck a chord. Bad health is so unexpected. You seem to have a great attitude. I’ll be thinking of you.

thank you Chrystal from time to time we need reassurance "that we have not got a very big dose of inflated imagination". my name is graeme, I'm now 76yo and have suffered and was diagnosed with CIDP about 19 years ago. I get IVIG every three (3) weeks an have done for the diagnosed period. I used a single point stick at all times at home, but when out it is either two elbow crutches or an electric wheelchair, unable to walk any distance. I used to suffer pain but that was made tolerable by 6-7 day Ketamine in infusions. My diagnosis seems to change all the time - don't think it will improve.......so my advice is just fight the "thing" every hour....and don't give up.....have seen too many people do that with disastrous results......cheers graeme

crystal, your story is my story. im every 3wks also. everything you said makes me think we are the same person!😅 that “boost” you speak of is soooo real! ty for your story