Tuesday, March 4, 2014

1. I have CIDP, a very rare malady that is much like MS.  

Без труда не вытащишь и рыбку из пруда.
[byes troo-DA nee VI-ta-shsheesh ee RIP-koo ees proo-DA]
You cannot pull a fish out of a pond without effort.

Meaning: You need to work hard if you want to get something.

A work in progress. That's what I am. And I want my life back!

I am someone whose immune system was pushed into overdrive by a flu shot (read the fine print next time - where it mentions Guillain-Barre Syndrome, GBS).  And after a few months of waiting for GBS to subside, which it did not do, I gained a new acronym, CIDP, which stands for "Chronic Inflammatory Demyelinating Polyneuropathy.

What is that?  I'm going to borrow from National Institute of Health:

What is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.

Is there any treatment?

Treatment for CIDP includes corticosteroids such as prednisone, which may be prescribed alone or in combination with immunosuppressant drugs. Plasmapheresis (plasma exchange) and intravenous immunoglobulin (IVIg) therapy are effective. IVIg may be used even as a first-line therapy. Physiotherapy may improve muscle strength, function and mobility, and minimize the shrinkage of muscles and tendons and distortions of the joints.

What is the prognosis?

The course of CIDP varies widely among individuals. Some may have a bout of CIDP followed by spontaneous recovery, while others may have many bouts with partial recovery in between relapses. The disease is a treatable cause of acquired neuropathy and initiation of early treatment to prevent loss of nerve axons is recommended. However, some individuals are left with some residual numbness or weakness.

This is what a healthy nerve looks like:

This shows you the proliferation of nerves in a human foot (lots of them, far more than the illustration)

This shows the length of nerves, and why hands, arms, feet and legs are most affected by CIDP damage, owing to the long length of the nerves.

What happens to the nerves in the body is illustrated here:

Obviously the type and severity of this syndrome depends on how much demyelination takes place. In light cases, much of the damage gets healed over time and with IVIg or other meds that distract one's own immune system, but many suffer paralysis and or massive sensory loss or alteration as an ongoing feature. Closest to MS (Multiple Sclerosis), CIDP normally affects the peripheral and sensory nerve systems, where MS is usually confined to the central nervous system. CIDP is far more rare, as well.

But they make it sound far less ominous than it truly is, so allow me to give you a brief outline of my own 'syndrome' within the CIDP heading (dates might not be exact, but close):

Jan 20, 2011:  My pinky toes were both numb (weird, not too worried as I thought it had to do with an old back injury from an auto accident. 

Jan 21, 2011:  All of my toes were numb when I woke up, and parts of both feet, uniformly. And through the course of the day that numbness creeped up my feet 'til even my ankles were numbing. Plus, on vacation in Death Valley with my husband, I found I was physically unable to climb up a sand dune. I thought I was really out of shape!  My leg muscles just would not allow me to climb at all, and I found myself also tripping on things, heavy weird sensation in legs.

By Jan 23, 2011: Home from vacation, I met with my doctor and told her about my weird numb feet. She thought diabetes initially, took labs - not diabetes, so she immediately phoned a Neurologist, referred me. And I went off to Denver for the weekend to go sledding with all of my kids, grandkids.

Jan 25, 2011: Every hour I lost another bit of strength in my legs. Numbness was also creeping higher. I fell trying to get up from the toilet, and later trying to lift myself up into an airport tram. I could not walk up the stairs at my son's home in Denver without huge effort and pulling with my arms on the banisters.  Tried to keep it from my kids, we went to Winter Park to enjoy tubing, and I just couldn't do stairs. I declined the tubing except for one run with grandkids, and struggled to get back to the top even with the lift and help from my big strong sons.  

Jan 27, 2011: Back at home, a couple more falls, unable to lift a leg for one single stair step, I met with Neurologist for my referral appt, and after a lot of tests, including spinal tap to check for a certain protein that is definitive confirmation of demyelination occurring along the length of my nerves.  Within the course of a week's time, I had lost all deep reflexes in knees, ankles, elbows and wrists; numbness and partial paralysis had migrated up to my waist and my hands and lower arms were involved; severe double vision was next and the center 1" of length of my tongue was numb/altered sensation. Add to that, excruciating pain, as I not only had demyelination on motor nerves in the Peripheral Nervous System, but also Small Nerve involvement, meaning sensory havoc. He Dx'd me as having Guillain-Barre Syndrome.

Feb 3, 2011:  By the time I began IVIg, (a life-saving intervention of immune-globulin from a mix of over 1000 donors), I could walk no more than 20 steps on flat surface; could not do one single stair step, had excruciating constant pain in all affected areas, and strange sensory features like feeling like my feet had layers of shredded cardboard glued all over them. I could barely feel the floor to gain balance, so the moment I closed my eyes, I'd tip right over. Very frightening to lose yourself in the space of 10 days!  So this is about my long journey back to 'me', and the things I've learned along the way about how our USA approaches patient care, and ultimately, about my decision to stop endless 'treatment' and go for a curative procedure, instead.  

Come and join me on my journey to Moscow, Russia, and to HSCT, the one procedure that is helping people like me, and MS and other Autoimmune Disorder patients arrest the chronic assault and the secondary assault that is our medical system, medical treatment to 'treat' the disease, but not to cure it. Because profit comes before patient health in our Capitalist Nation, and someone has been making over $244,000 a year prolonging my CIDP rather than offering me a cure. 

Why did I name my blog "War and Peace", you might ask?  Because illness in our country is as long and drawn out and excruciating as that famed Russian novel, and in the end, my story will take me to Russia to put an end to CIDP.  Come along.  


  1. Very nice post, impressive. its quite different from other posts. Thanks for sharing.

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  2. Rereading Susan.... 12 days and counting down
    Thanks for this and everything you have done