[Healthgirl]

I checked into my online medical records for my last follow up visit with my neuromuscular doctor. For my first appointment my record and office notes said "idiopathic small fiber neuropathy". That was 6 weeks ago.
I went in last week for my follow up exam and he didn't say anything to me about my current condition besides to try Lyrica. I just logged in to my record and it says under diagnosis "progressive polyneuropathy", "small fiber neuropathy". Why wouldn't he say anything and what does this mean?

[boiler1993]

Hey healthgirl
My doc did almost the exact same thing! The last time I was in the office and we were talking I said something about not understanding how I could have all of these symptoms and it not being SFN and he turns to me and says "Oh YOU HAVE SFN" and then he updated the online thing from nonspecific neuropathy to idiopathic small fiber neuropathy. I was so confused too. I don't have any answers for you I just thought a similar experience might be helpful.

[mrsD]

I wouldn't put too much on those diagnoses.... They are mostly for insurance billing purposes.

They can change in a flash if new symptoms appear or new blood tests reveal something new. PN is typically difficult to name and therefore treat.

PN can be a primary disease, or a secondary manifestation. Similar symptoms but different names. It can be confused with many other peripheral nerve disorders, including MS. We have a member here who finally received an MS diagnosis and she posts occasionally on MS board now. MMN also can be confused with PN.

[baba222]

[QUOTE Why wouldn't he say anything and what does this mean?[/QUOTE]

I have found that communication is the worst with our type diagnoses and symptoms.

I almost think that they are so stressed about thinking about our symptoms that silence or discounting our symptoms are their defence mechanism. They can't do much to help beyond testing and more medication.

I hope you are better soon.

[Healthgirl]

Originally Posted by baba222

[QUOTE Why wouldn't he say anything and what does this mean?

I have found that communication is the worst with our type diagnoses and symptoms.

I almost think that they are so stressed about thinking about our symptoms that silence or discounting our symptoms are their defence mechanism. They can't do much to help beyond testing and more medication.

I hope you are better soon.[/QUOTE]

Thanks,
I think he feels sorry for me and just didn't want to lay it on me face to face. He saw how my hands are trembling now and my limbs are so weak. He just side stepped the question of "what is going to happen to me?" He just changed the subject.
I have an appointment with another rheumatologist next week. She is very young, so maybe she will be willing to expend some energy on at least trying some treatment. Then again, I think maybe my luck might be better with someone more experienced, who would think outside the box and look at me clinically.

[zkrp01]

Originally Posted by Healthgirl

I checked into my online medical records for my last follow up visit with my neuromuscular doctor. For my first appointment my record and office notes said "idiopathic small fiber neuropathy". That was 6 weeks ago.
I went in last week for my follow up exam and he didn't say anything to me about my current condition besides to try Lyrica. I just logged in to my record and it says under diagnosis "progressive polyneuropathy", "small fiber neuropathy". Why wouldn't he say anything and what does this mean?

I think Mrs. D is right, some labels come across insurance desks and get paid faster out of recognition and repetition and sheer numbers. If you read and study here, the longer you read the more you recognize that there are not many hard and fast rules. Don't let "progressive" freak you out. In the long run, the symptom management is the endeavor of the drugs of choice, Gaba, Lyrica, and for pain, Tramadol, Hydrocodone, etc. Some people doing all they know and still asking what more can I do? (Baba 222) The real healing IMHO is a function of satisfying yourself that you understand what makes for good Mitochondrial health, excersize, sleep, and then allow patience to filter into the mix. Their drugs do not repair anything, they just make you feel better while YOU are doing the repair. I apologize for a little venting here. Good Luck, Ken in Texas.