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?
-and-
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.

#ChronicInflammatoryDemyelinatingPolyneuropathy
#ChronicInflammatoryDemyelinatingPolyradiculoneuropathy
#GuillainBarreSyndrome
#NeurologicalDisorder
#BurningMouthSyndrome
#Undiagnosed
#UndiagnosedDiseaseNetwork
#UndiagnosedRareDisease
#RareDiseaseDay