I was diagnosed with CIDP about 4 years ao. I have unfortantly been progressing at extreme speed with it. I wear knee high braces, have no depth perception,Fall all the time, my strength is very limited,And now- I am experiencing Extreme pain! In legs, back - from above bottom all the way up to back of my head.And in just 1 month , my fingers are feeling like sharp peircing needles . Also I can no longer snap or zip clothes. Also I am continuily burning myself due to I just don't feel in my hands anymore . Is anyone else going through such rapid progression with there CIDP? I would love to talk to someone else who is experincing such rapid problems! I would really love to have someone to talk to who understands. I have had or are haveing - many forms orf treatment . I have many kinds of meds, get ivig treatment every other week 3 times. is anyone else going through ths ? and also lately my tounge seems to go raw after treatment, and food is just awful to try and eat.I would really appreciate anyone sending me what ever they have experienced themselves , or stories they are dealing with themselves. thank you , happydy42.
I was diagnosed in 1995. The first 10 years or so was very bad. I had the plasma Pheris. Can't spell it. Then the ivg3 time 3 week ever other week then there was a shortage on the med. I could not get treatment by accident Dr and I discovered that 120mg of solumedrol injection helped we stuck to it. I started out on 60 mg of pred. And imuran and klonphin 2mg. For about 2 years now i am on 20mg of predizone shots just when i need them. I know how bad that pain is. No one can imagine how bad unless they have it have you tried any other treatment? I know you probably feel this will get better. But I believe it will. It is hard to believe I lived through the worst of it but I did hang in there I think you are a strong person. You will get through this. Write me back if you like.
happydy42,
I too, was diagnosed with CIDP but just about 2 years ago following about 6 mos of mild symptoms (weakness while walking) . It took about 6 mos seeing various MDs, then I waited another 6 mos to agree to the IVIG. All the while my symptoms SLOWLY increased and they continue to slowly increase. Unlike others on this forum, IVIG's effects for me are not significantly noticeable. I stay on it in with big hopes.... hopes that it is preventing worsening of the disease. My symptoms don't necessarily improve after my two infusions. Over the past few years I have developed a noticeable calf muscle mass loss. Walking with low heel shoes with arch supports and doing toe stands keeps me holding my own but not reverting to being "symptomless" as I have read from others. On bad days/weeks I have a noticeable limp but always have a slight limp.
Your rapid increase in symptoms concerns me and here is my hope that you had some remission to enjoy family during the Christmas season. I read a lot about the pain associated with this crazy disease. You must be so very uncomfortable from the pain in your legs and back and the neuropathy in your hands.
As a fellow sufferer, know that I care for you and hope you find some answers. There are many understanding and caring people here............
mike
My CIDP is not progressing as quickly as yours and only just started IVIG with success so far with the exception of side effects. I just wanted to reach out and wish you well and hope your condition starts to become more manageable soon. Have a Healthy and Happy New Year
Hi Happydy42, my symptoms have progressed so qucikly in the last five months that I am truly terrified. What scares me the most is that I am still going from doctor to doctor to try to get diagnosed even though I know I have CIDP. i onew it three months ago when I read aboit it. My internist/cardiologist, who has treated me for years as my GP, diagnosed me with CIDP but cannot treat me for it. I am seeing an expert in MS so we could rule it out. I have had 3 MRIs which have shown no legions; a lumbar puncture which came back with normal protein levels; an EMG of upper and lower extremities which showed asymmetric severe sensory nerve damage and moderate motor damage. I have absolutely no reflexes in my knees or ankles. My symptoms began with tinglingand numbness in my right big toe and my left index finger. Believe I had isolated symptoms foing back at least 2 years ago when at the dog park, I tried to run, my legs froze and I fell on my face. Currently, my right hand and arm are completely numb and I must use two hands to pick up anything. I can no longer write with a pen and I am using a cane to walk. During the holiday week was the first time I fell…twice. Lately, my right eye seems to be pulling in toward my nose and I see double when that happens. I feel like there’s an octopus wrapped around my left hip hitting my back with a hammer. I am on FIRE all the time despite taking Cymbalta. I have Crohns Disease as well, so I have stamach pain and can’t eat much. Not trying to out-pain anyone, just trying to let you know you are not alone. Also trying to put out there how quickly I am progtessing while the drs take their time. Any advice on how to move things along so I can start treatment BEFORE I am in a wheel chair? How did many of you get diagnosed? did you had to have a nerve biopsy? i live on LI, new York. Does anyone know any doctors here or in Mahattan who are experienced with CIDP? My husband and I are losing hope. All we do is hold each other and cry. My heart breaks for all of you who are going through this terrible disease. There is no mercy.
Hi again, I just wanted to throw some ideas out there for you. I can’t imagine how scared you must be because i am too. If the IVIg isn’t working so well I would researxh online for a doctor somewhere where you could resonably travel who specializes in new treatments for CIDP. I found one myself but he is in NY and I see that you are in CA. I know that they are doing stem cell research now with CIDP and maybe you could get yourself into a trial. Also, there is a site for a foundation called GBS/CIDP Foundation International and they have a list of treatment centers they call centers of excellence for treatment of the disease. I am interested as well but the closest one to me is in Maryland. Check out the site because there are 2 in CA and one in AZ. Hope some of this helps. Know you are not alone in your fight because we are falling, dropping things and burning in pain with you. Here is the link. http://www.gbs-cidp.org/home/get-support/research-grants-2/. Jo
I see Dr. Howard Sander who is an expert in CIDP and is at NYU. He diagnosed me after a period of progressive weakness and dizziness. I am also diagnosed with Celiac Ataxia and Lupus. I started IVIG and have had about 6 treatments so far and I am dealing with side effects just changed brands to Gammagard. I really like him he is a dedicated doctor and knows his stuff. You might want to look him up. Also check out his publications on the topic under google. Good Luck
Doggymama said:
Hi Happydy42, my symptoms have progressed so qucikly in the last five months that I am truly terrified. What scares me the most is that I am still going from doctor to doctor to try to get diagnosed even though I know I have CIDP. i onew it three months ago when I read aboit it. My internist/cardiologist, who has treated me for years as my GP, diagnosed me with CIDP but cannot treat me for it. I am seeing an expert in MS so we could rule it out. I have had 3 MRIs which have shown no legions; a lumbar puncture which came back with normal protein levels; an EMG of upper and lower extremities which showed asymmetric severe sensory nerve damage and moderate motor damage. I have absolutely no reflexes in my knees or ankles. My symptoms began with tinglingand numbness in my right big toe and my left index finger. Believe I had isolated symptoms foing back at least 2 years ago when at the dog park, I tried to run, my legs froze and I fell on my face. Currently, my right hand and arm are completely numb and I must use two hands to pick up anything. I can no longer write with a pen and I am using a cane to walk. During the holiday week was the first time I fell...twice. Lately, my right eye seems to be pulling in toward my nose and I see double when that happens. I feel like there's an octopus wrapped around my left hip hitting my back with a hammer. I am on FIRE all the time despite taking Cymbalta. I have Crohns Disease as well, so I have stamach pain and can't eat much. Not trying to out-pain anyone, just trying to let you know you are not alone. Also trying to put out there how quickly I am progtessing while the drs take their time. Any advice on how to move things along so I can start treatment BEFORE I am in a wheel chair? How did many of you get diagnosed? did you had to have a nerve biopsy? i live on LI, new York. Does anyone know any doctors here or in Mahattan who are experienced with CIDP? My husband and I are losing hope. All we do is hold each other and cry. My heart breaks for all of you who are going through this terrible disease. There is no mercy.