Appt update, not as well as I’d hoped

[JennaShi]

Well.. so my new neuro muscular specialist has come to the conclusion that I have small fiber neuropathy (not new information) as well as being under the assumption that my positive ganglioside antibodies are from cross reactivity since my antibodies are slightly elevated and I have symptoms that match up with sfpn (i think the other symptoms have been ignored). She has also informed me that she wanted to refer me to a psychiatrist and wanted to start me on nortriptyline (however you spell it), saying it’s a pain medication. I found out later that it’s actually an antidepressant that is commonly used for neuropathy pains.

There is no test for cross reactivity and she said she can do another emg/ ncv but thinks it will show up normal. i am no closer to a diagnosis but have been informed that medication can help/ pain can affect heart and brain. I’m a bit still hurt and upset to say the least and this medication continues to cause issues with swallowing for like the first half hour or so.

My question for anyone Who might know a bit about this is: don’t antibodies usually cross react? From my understanding wbc fight all kinds of things like virus and bacteria etc. so how is she to be certain when there isn’t a test to prove it?

Additionally, from my understanding, antibodies take time to develop. They don’t just start with a whole bunch at one time. And why would she request this test “to rule it out” and not take the answer seriously if ganglioside antibodies have nothing to do with sfpn?!

Please excuse my emotions right now, I just want to find an answer and she has put me on an antidepressant that supposedly helps with neuropathy and takes time but I don’t feel any changes. Even though she says she never thought I was a hypochondriac, it sure feels that way.

**update** I have requested a second opinion and appt from my new Rheumatologist. As we speak I'm experiencing dry mouth a side effect of this new medication, as well as pain and more intense paresthesia on my right side knee down. I have also asked her to perform another emg/ ncv so she could meet me in person and if anything shows up that she could see for herself but maybe I will request my other neurologist, Dr. Price to do it. She seems to have already made up her mind about me.

[MissusTee]

All I can say is that the ‘triptyline’ family of medications are very commonly prescribed for different types of neurological pain, the fact that they’re also antidepressants are not an indication that they think you have depression. Many meds have more than one use x

[JennaShi in reply to MissusTee]

Thank you for your note and can see that that now. This message came from some anger and doubt because she had not explained what the medication was in the beginning. I think if she had explained it to me and we had an open talk I probably wouldn’t have been so flustered. Hindsight is 20/20 and for me it unfortunately hasn’t helped with my neuropathy. I think that it has opened my eyes to see that pain relief can be beneficial and am open to trying something else. Gentle hugs