Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is an acquired immune-mediated inflammatory disorder of the peripheral nervous system. It is a rare disorder of the peripheral nerves characterized by gradually increasing weakness of the legs and, to a lesser extent, the arms. The incidence of new cases is estimated to be between 1.5 and 3.6 in a million people.

At the age of 51, I was finally getting into the kind of shape I had always promised myself I’d pursue. I was 210 pounds of well-shaped man. In February 2013, I started feeling pain in my shoulders and hands with numbness in my fingers. I sought help from my General Practitioner, who suggested I reduce my workouts.

I got massages and saw a chiropractor regularly for another month or so, but it wasn’t helping and I was losing weight rapidly. Down 15 pounds in a short period of time and I wasn’t sleeping, due to the pain. I’d had a couple X-rays of the c-spine to see if there were any visible signs of spinal damage, but only minor age-related narrowing existed. One day the chiropractor told me to walk toward him, on my heels. My toes wouldn’t raise and the doctor told me to seek further medical help immediately.

My GP referred me to a neurologist, who began a battery of tests that included 5 MRIs, 3 CT Scans, multiple X-Rays, blood work upon blood work, a myelogram, lumbar puncture, and I don’t remember what else.

Referred to yet another neurologist, I also received EMG tests. All the while I continued losing weight and getting weaker. My gait got clumsy and I was falling frequently. My feet felt like they were on fire, the pain was excruciating. Over time, I lost over 50 pounds. Down to 165 and I thought I was dying. Not knowing what was happening was the most frightening part of it all. I began to take stock of my life and my partner, who put on a strong face for me, was secretly crying himself to sleep.

Meanwhile, Dr. Google was my daily consulting physician, and I began narrowing in on Guillain-Barré syndrome (GBS). I was scared. I read that I could end up completely paralyzed and on a ventilator for months. I watched videos of patient stories. But GBS comes on more swiftly and would have already reached its acute phase by now. Still, there was another related syndrome that comes on slower. It’s called CIDP. I suggested to my neurologist that this might be the culprit. He scratched his head and told me that I still had deep tendon reflexes, a sign that it wasn’t CIDP. He was stumped, because there was enough spinal stenosis to suggest a physical cause, but it wouldn’t explain hands and legs being simultaneously affected, a sign of CIDP.

The next visit, my reflexes were finally gone. CIDP was the diagnosis, finally, and I felt relief. I quickly began treatment of IVIG, scheduled every two weeks at 86 gm per treatment. Treatment is expensive, costing about $10,000 per treatment, and a loading dose consisting of multiple infusions. This had an immediate affect on my hands, regaining strength that had deteriorated so badly that I could not open a water bottle or trim my own nails. After a few treatments, I seemed to continue to deteriorate, so I reached out to my neurologist and asked for additional help. I was given a corticosteroid, a booster of man-made Cortisol, the “fight-or-flight” or “stress” hormone. I noticed immediate declines to the progression of the weakness, but no improvement. I ended up on disability leave from my office job.

Eventually, I got Ankle-foot Orthotic (AFO) braces to help with the lower leg weakness and left foot drop, and I got PT. These had a huge positive influence on my life. I was walking more naturally. I was falling less. Life seemed to be normalizing somewhat. I even returned to work, after 5 months.

Today, I look at life differently. I stop and smell the roses. My partner became my husband and I appreciate every day, despite there being no cure. I am blessed to have discovered the real meaning of life, one wobbly day at a time.

14 thoughts on “Mysterious Weight Loss Leads to Diagnosis of CIDP (Chronic Inflammatory Demyelinating Polyneuropathy )”

  1. Jamie says:

    I too have cidp. You are incorrect in saying there is no cure. There is and it’s called HSCT. I was unable to get HSCT in the US so I traveled to Russia. Like you my body had been deteriorating. HSCT gives me an 80-90% chance at remission. If you want to learn more check out my blog. Good luck to you.

  2. Adrian Stock says:

    Man. This sounds a lot like symptomsI have, except with what may I think is Neuro-Bechet’s Disease. I know I have Ehlers-Danlod Syndrome, and I was diagnosed with M.S. after I woke up with most of my right side paralyzed and two lesions on my cord in my c spine. I saw a specialist in MD who was able to recognize that I had other symptoms such as mouth ulcers, but I’m also wasting weight at a rapid pace, also a sign of Neuro-Bechet’s Disease.
    I don’t know if they are similar or not. But it’s creepy that there are so many similarities, weight loss, I’ve lost 100 lbs. I’m 6’5″ and solidly built steroids help me regain strength, but I can’t put weight back on.

    This is scary. My wife left me the day after I got home from the hospital with the M.S. dx. I know it’s hard on your partner, but if he’s still there I hope you both the best. I’m not sure if there is anything I could do to help you, but if there is let me know.

    I’ll look into this, the burning nerve pain in my left side, especially my footis insanely bad.

  3. Carol Wright says:

    My husband has CIDP and prostate cancer and he has had 2sessions of IVig Infusions and all kinds of meds and nothing seems to help, would love to hear from someone about how they feel , my husband is in pain 24/7, wish I could do something for him, can’t stand to see him suffer!!!

  4. Belen says:

    Hi. I have CIDP too and I’ve been in remission for almost 5 years.
    Remission is not a synonym for cure, you’ll still have symptoms every once in a while… You might gain or loose weight unexpectedly and you’ll get what I call “electrical failures”. What makes remission to be what it is is that you have normal levels of myelin within you and that you recovered your reflexes. I lost them more than twice since my doctor made my remission official, I have also been in pain but I don’t let fear grow. Fear is a bitch. I’ve been a vegan for 2 years now, I treat my symptoms with food and vitamins and I decided no to take painkillers or pregabalin anymore… Just when I start crying from pain.

    What I mean by saying all this is that you must NEVER give up. Remission is something we work very hard to keep every single day. Take care of yourselves. Eat fruit. Eat veggies. Do what you love. Don’t waste time. Don’t dwell on the negative. Complain to your doctor. Ask for a higuer IVIG dose. Embrace the pain sometimes (medication eliminates the pain but damages your body) and seek for support. Talk to others who also have CIDP. Cry if you want to cry. Shout if you want to shout. Live!

  5. Paul Hegarty says:

    Hi, got cidp when i was 50, feb 2013 started with burning feet and legs extreme fatiguie by august was completly paralized in wheelchair for 9 months, was in hospital and rehab for 15 teen months, back on my feet now not great at walking but i can walk with one stick, had two plasmapheresis and get ivig every 5 weeks also steroids every 6 months have two droped feet numb from feet to nees pins and needles in my hands and numbness very little strenth in my hands but you know what very happy one day at a time anything better than being in hospital, hope your doing well
    good luck.

  6. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is an acquired immune-mediated inflammatory disorder of the peripheral nervous system, Seems like a rare and serious condition.

  7. veronica says:

    I’ve had Gbs ,then Cidp.I went from.paralyzed from shoulders dwn.Rehab and praying Ivig treatments 2 1/2 yrs later walking.Stil have no finger tips.Top layer of skin to mid level insert of needle or cutting then I feel.On previgen IVIG .I made remarkable changes,Call it remission.I do one day of normal is nice 1yr 8 mths.I was dancing laughing climbind Stairs no pain.,,Hospital contracted with gamma products .For Ivig.needless to say CIDP cant have sugar.Those Ivig co are sugar base .I started to crash..Left side numb wet sock feeling on feet.Droping milk.glasses,no strength toes hurt terrible.Called Neuro.He said your fine.So called Hospital.Only to find out I was right.Hospital said I can’t have sugar base and Dr never documented CIDP.He appologised got me a similar product SODIUM.base with Im with 1g ,slowly doing better..Hope this helps people understand about Ivig and Drs don’t know everything.Plus how nice the pharmacy at hospital was.Plus I also called the mfg of gammas .She said no not her products for my diagnosis,gave me the 800# of mfg that did.That Scientist of the PLASMA called me at 8:30am.Said Drs aren’t aware of treatments because they don’t take refresher courses on IVIG.She even emailed me to give to my Neuro..Good Luck…Theres an easier Stem Cell coming out.this year in 2015.Sign up for research.Stay informed..

  8. Kim says:

    I have had CIDP since 1979. at the age of six (after 3yrs of pain, weight loss and weakness starting in 1976) I am only 43yrs old. My CIDP was initially treated with steroids and Imuran, and now IVIG. My CIDP has started to progress into my CNS and my Dr. has no idea why. Everyday is painful, scary and frustrating.

  9. Mary Beth Gawenus says:

    I too have CIDP. However, I don’t have the burning pain with it. Occasionally , I have shooting pain but it does ‘t bother me. My feet are sensitive to touch. They are also numb- mainly no vibration. I also have foot drop- have an AFO to wear- right foot. My feet feel like they have a layer of plaster all around them. I also have heaviness up to my knees. Feel free to email me your thoughts.

  10. Hello guys !I’m Charles Kakui from Nairobi Kenya. I was diagnosed with CIDP in 2013. Have being on corticosteroids i.e Predisone and Mycophenolate ever since, but my strength hasn’t improved that much. From my research i do believe their is hope in stem cell transplant. Kindly help me raise USD 22,000 for my stem cell transplant at Wu medical center in beijing China through gofund me. Charles’ Medical Fund by Patrycja Saida

  11. Candice T. says:

    I was diagnosed in 2015 after several trips to the ER. Before CIDP I was very active and pain free. Today it’s rare to be without pain. I try to get answers from my neuro but she doesn’t understand why I’m having severe pain in my feet. I do not take meds for it nor is it a side effect of the couple meds I take. Can someone please tell me if they get swelling and redness in their feet?? I go for a short drive, sitting maybe 10-15 min, and this happens every time!!! I’ve tried sitting at an incline, “special” socks and neither helps at all. I’m currently in physical therapy and I work through the pain but when I see my toes bright red and inflamed it scares me! Has this happened to any of you? Do you know why?

  12. pooja says:

    my mom is also suffering from CIDP (madsam variant).
    Her condition is deteriorating everyday. she is now on wheelchair. She can’t even pick a biscuit with her fingers. We have done everything like IVIG 2 times, 40mg Steroids for 5 months etc. Now we have started Cyclophosphamide.

  13. Lynne Hatfield says:

    my husband has gout and seems to have those symptoms that you have. very painful and swollen feet..and red. He is just now getting diagnosed for the cidp.

  14. Josie Lord says:

    I am in the process of discovering whether I have cidp or not. Hospitalised 7 months ago with symptoms similar to all of your comments, a so called virus. Every blood test came up negative for goodness knows how many viruses tested for. Only now it is a real possibility that it is cidp. Symptoms are like a shiver in the lower body, cold, heavy feeling, tingling sometimes, clumbsy feeling when confronted with stairs or uneven ground. Fascisculations mainly in calves, but now progressing to front of tibia. Lost 7 kgs in eight days while in hospital. Have read lots, trying to work out what this thing is. Outwardly everything looks fine, but inwardly from the waist down seems continual weakness. Hard to describe. Josie

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