Chronic Inflammatory Demyelinating Polyradiculoneuropathy

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Chronic Inflammatory Demyelinating Polyradiculoneuropathy
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Doctor With Zero Clue

I believe I have CIPD. Unfortunately, I’m currently dependent on a GP for specialist referrals. I insisted on seeing a Neuromuscular specialist - the guy made an appointment 4 months away(!). I have severe pain 95% of my time - there’s no way I can wait!

2 issues: how do I educate this guy about rare disorders? And is that what he went to med school for?
I’ve read that it’s critical to get early treatment in order to avoid permanent disability. This GP is acting as a human hurdle to treatment. If indeed it is CIPD, isn’t the guy somehow culpable for wasting time, thus contributing to the deterioration of my health?

I have diagnoses of Ehlers-Danlos Syndrome, Fibromyalgia, ME/CFS, Burning Mouth Syndrome, IBS, Hypothyroidism, Severe Degenerative Disc Disease, and unattributed neuropathy, tinnitus and heliotrope rashes.

Any wisdom/thoughts you may have are appreciated. Sending good energy to you.


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Excruciating Pain #ChronicIllness

It’s 1:02 AM and I’m laying in bed in severe pain. Every inch of my body hurts from my head to my feet. The chronic pain from my POTs Syndrome, Chronic Inflammatory Demyelinating Polyradiculoneuropathy, and Osteopenia; gets worse every year. I’m seriously losing my mind. #LivingWithPOTS #ChronicInflammatoryDemyelinatingPolyneuropathy #Depression #Anxiety