My CIPD Rare Autoimmune Disease Is Not A Mystery

My world seems to be a mix of opportunistic rare autoimmune diseases, rainbow happy endings, and a host of new issues that may change my horizon.

For the HypoGal readers that have followed me for years, you have witnessed my family's roulette journey of rare, unpredictable health conditions. Our family's health issues give off ear-piercing screams.

I hope my HypoGal's journey of rare diseases; life situations can help others.

Here goes my HypoGalBlog post:

I indulge in a jacuzzi Saturday evening as the sun settles to stars, and I am grateful.

I am thankful to watch my children grow, my days often feel long, but the years seem short. (Quote from my dear friend, Anna)

My days appear long as I miss years long ago, and my CIPD flares radiate throughout my left leg. My left thigh often feels like all the nerve endings are screaming like an out of tune chorus.

Before I share, What Is CIPD? I want my HypoGal readers to know that you can't make this $&?! up!

My CIPD Experience

My body absorbs every chronic inflammatory disease known to humanity; CIPD is now in my landscape. Before children, I use to ski.

When I tried to ski four years ago, I collapsed. My sudden fall to the snow-packed mountain occurs because I cannot lift my left foot.

I also do not want another health issue; I hoped it would go away. It did not.

Years pass; my left leg often limps, especially when I am stressed. I should also note that shooting pain frequently radiates through both of my legs.

Neurologist Diagnosis My CIPD

After years of battling Cervical Dystonia, my health condition brings me to a Neurologist.

I want to note that this is not my first visit with this Neurologist. My neurological issues began with this expert medical about seven years ago. Unfortunately, I was sick of being sick; it felt like I was always putting out a more massive health fire and I did not return for my follow up appointment.

With humility, I return to this Neurologist for an appointment. I need to know why my legs are sore and why they have begun to lose their feeling.

The Neurologist performs numerous neurological tests; a painful nerve biopsy provides an answer.

I have Chronic Inflammatory Demyelinating Polyneuropathy (CIPD)

The National Institutes of Health have written the following about CIPD:

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.

I am not surprised I have Chronic Inflammatory Demyelinating Polyneuropathy; I feel each year my almost nonexistent muscle shrinks more.

Chronic Inflammatory Demyelinating Polyneuropathy CIDP Treatment

IVIg may be a first-line therapy as a CIDP treatment.

Intravenous immunoglobulin (IVIg) therapy and Plasmapheresis (plasma exchange) are effective in CIDP treatment.

Other CIDP treatment includes corticosteroids such as prednisone.

Corticosteroids may be prescribed alone as a treatment or in combination with immunosuppressant drugs.

The body's muscle strength, function, and mobility may improve with Physiotherapy.

 

ivig infusion for cipd

My Chronic Inflammatory Demyelinating Polyneuropathy CIPD Treatment

I am already on the CIDP treatment of corticosteroids for my Relapsing Polychondritis and Sheehan's Syndrome.

Daily steroid use was introduced to my body eighteen years ago to treat Sheehan's Syndrome. Without my daily steroids, I would be dead. My body is unable to produce cortisol.

I wonder if I need additional steroids to combat CIPD?

A nurse infuses IVIG into my body every twenty-one days for two days.

IVIG treatment helps me. Without this expensive but priceless medication, my journey would have little quality of life.

Even as I notice my CIPD progress, I know the IVIG wards off the progression.

CIPD Support Groups

Knowledge is power, so I reach out to others who CIPD and Guillain-Barre affect.

I begin by joining a CIPD Facebook Page.

From the Facebook CIPD Group, I learn of other resources;

CIPD Government Trails 

NIH ClinicalTrials.gov

My CIPD Recap

CIPD is an inflammatory health condition. When you include CIPD into my medical background, the situation screams, yes, inflammation!

My body is full of inflammation, and I know stress is a trigger.

Right now, my stress trigger is from trying to downsize our family's life.

My not so brilliant plan to find a new venue that would provide peace and purpose for our family seems to wreak havoc on my body. I need peace.

 

Resources: https://www.ninds.nih.gov/Disorders/All-Disorders/Chronic-Inflammatory-Demyelinating-Polyneuropathy-CIDP-Information-Page

https://www.facebook.com/gbscidp/

https://www.gbs-cidp.org/support/

http://www.igliving.com/resources/ig-disorder-guillain-barr%C3%A9-syndrome-gbs.html

https://www.christopherreeve.org/living-with-paralysis/health/causes-of-paralysis/guillain-barre-syndrome

http://www.ndrf.org/acute.htm
https://clinicaltrials.gov/search/term=Chronic%20Inflammatory%20Demyelinating%20Polyneuropathy%20(CIDP)

https://www.doihavecidp.com/en/cidp-community

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