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Hi to everyone:

I am feeling very frustrated right now, but have hope that someone on these boards can help me with insight, experience and knowledge.

I've been having pain in my legs for years, with the last 2 years being the most difficult. I saw my Neurologist today to discuss the results of my punch biopsy. I was informed that I have small fiber neuropathy.....with "significantly reduced epidermal nerve fiber density".

I guess, in some small way, it's a relief to have a diagnosis....but I am still feeling lost and frustrated. Here's why....

While I've been seeing this particular Neurologist for 3 months, this is the second Neurologist I've seen. The first one told me...."Nothing else I can really do for you....I don't know what is causing your pain". Okay. (1st emg showed femoral neuropathy, 2nd one showed normal results ?) I literally thought I was going insane. Why on earth am I having so much pain? Cut to 6 months later, when my primary doctor sent me to my current Neurologist.

I'm looking for ANY advice, thoughts, insights into this frustrating world of sfn. Today, when I tried to explain how uncomfortable I am....my Neurologist said "Don't worry....you need to give me time. I am the only one who's been able to properly diagnose you". He proceeded to show me all of his accomplishments and credentials ornamenting the walls of his office. It really rubbed me the wrong way....as if to say....I am the only doctor who has the knowledge and experience to treat you...or I know best.

Just a little history....I do have very low vitamin B levels....am currently on 18 months of vitamin B injections. I started Lyrica 3 months ago...changed dosage today to 300 mg daily. I also take tizanidine 3 tablets at bedtime. I explained that while this is helping me get to sleep, I continue to wake up every night by 3 am with severe pain and cramping in my legs and feet. "No worries...give me time to help you" was the response I got.

He also ordered an mri of the brain....scheduled for this coming Monday. He said that now we know I have sfn.....now, what is the cause. Apparently, he is checking for MS.

I feel as though I am rambling.....but I guess that's how I'm feeling. He said sfn is very painful.....when I tried to explain (again) how much pain I'm having, this is what he did.....He left the room and brought back print-outs showing some studies that patients who are given pain meds, or narcotics, to treat chronic pain....get compromised cognitive issues over time. Also...which he showed me with charts....patients who take narcotics for chronic pain have been proven to be responsible for a huge rise in emergency room visits.....I guess looking for more narcotics. I was SO taken back by this so called lesson (or lecture) from him....I felt awful for even expressing how badly I've been feeling, which is not an easy thing for me to do.

My head is spinning from everything that took place at my appointment. I don't know where to turn. This Neurologist is.....trying to find the word.....arrogant? I don't know. I'm not feeling comfortable with him at all, yet I'm not sure what to do. I love my primary doctor, but clearly he wouldn't handle a diagnosis like mine. I'm struggling with whether or not to make an appointment to see my pcp, explain how I'm feeling about this Neurologist.....take things from there??? Just feeling extremely lost. I was so hoping I'd walk away from this appointment with a plan of some kind to manage the pain. Once again, I walked away feeling frustrated and degraded for trying to explain how much pain I'm in.

I'm open to any and all opinions or advice, truly. Thank you to anyone who takes the time to read this......and especially to those who respond.

Jen





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