You are not alone friend. Sadly, there are some doctors (not all) that have a hard time comprehending something that they have not yet learned. Educating these docs with quantitative evidence may help, or perhaps they might have to learn “the hard way”, by acquiring the illness themselves. I’ve run into a few docs like this over the years. Sometimes moving onto a doc that understands you is the best thing. Relationships with docs are like relationships with a spouse…”It’s not you, it’s me.”. There have been times I walked away, and was put in the path of a better doc, because I was willing to move on.
I have had idiopathic epilepsy for 35.6 yrs. I have had the gambit of types. Epilepsy is commonly found in all girls, except 1 (darn that recessive!) on my father’s side. My younger cousin outdid me….she has autism (severe) and severe epilepsy, like the kind I had, but even worse. I have Sjogren’s syndrome, had 2 TIAs 4 years apart, ESR of 71 (three years ago it was 36), Rheumatoid factor of 11, anemia (unknown determination), MCV of 98-99 before beginning Cellcept (3 weeks ago it went down to 92),hyperhomocystinemia, high CRP, IgA of 752, acquired lymphedema due to IV cut down of improper dosage of Dilantin at age 10 (was in coma for 2 days), status epilepticus when not controlled, headaches that were brain blowing — they literally stopped you in your tracks in pain, meralgia paresthetica with leg spasms, folic acid deficiency (verified by MMA level), suspected IgA nephropathy (so much that I am followed by a nephrologist), systolic hypertension only, C7 central stenosis which needs surgery, 3 Scmorl nodes in T spine, thyroid peroxidase antibody +, Anti-Ro+, ANA+, but I am only 1:40, speckled, Schirmer test 3 in right eye and 5 in left, COPD, Chronic Bronchitis, frequent pneumonia for 3 years straight. And sometimes I could barely get anyone to take me seriously. Because people look at me and sometimes are like “You don’t look sick!”. You would think that with this many dots to connect they would, but sometimes the blind remain blind. I think there is a chance of C677 and SCN1A being correlated. I have had docs tell me that I need to go to Cleveland Clinic and spend time “with the big boys” because I “know more than some of us do” — and those quotes were by my docs to me.