Hi,
I want to let you all know what happened on Friday. I had made an appt with another neuro 3 months ago for another opinion and it was Friday. So many times I wanted to cancel the appt but my husband and daughter talked me into keeping it. I am so sorry I did. From the minute my husband and I walked into her exam room she was indifferent. She never introduced herself. Asked me how I got her name and I told her top docs and she responded with I have to get my name off that list.
The paperwork I brought with me was alot. She told me that next time please make sure that I send all this paperwork to a doctor before hand. She said she would never have the time to look through all of that today. I explained that the paperwork they sent me before my appt states to carry the charts into the office. She said I need to change that.
She then proceeded to tell me I did not have SFN. Since my first biopsy said yes and the second no that I probably had it but recovered. I told her I still had all the pain. She said they were symptoms not the disease.
I told her Hopkins said possible Sjogrens. She said absolutely not. I told her every doctor thus far has told me it is autoimmune. She said absolutely not because all my blood work came back within normal limits for antibodies.
She told me I need to stop looking for answers and treat the symptoms. I don't know what I'm suppose to be treating since she only let me get out how this all started but not most of the symptoms I have now.
For the first time in almost 5 years since this started, myself and my husband thought she treated me like a hypochondriac. I was so upset.
Then she proceeded to tell me if I did not listen to anything she said I should listen to this. GET OFF OF THE IVIG RXS. She said they are extremely dangerous. They could take my life with a blood clot or give me a disease they are unaware of thus far like people got Hepatitis C from blood before it was identified. She told me she believes there are a very minimal dx's that IVIG should be used for and none of my possible diagnoses was those.
I told her I was getting relief from them and why did that happen. She did not want to hear it. She said there is money to be made giving this Rx and that is why they use it. She continued to insist I go off the IVIG. I was in tears by the time I left there.
I also told her I was scheduled for and EMG today and she said cancel it there is no need for more testing. Again she said I needed to treat the symptoms and give up trying to find a cause. She told me I should only see a pain management doctor and deal with everything through them.
She also took a look at my Brain Scans and said they are nothing to worry about. They refer to them as unidentified bright objects. The only thing she believes they are causing is the hyperreflexes in my legs.
Needless to say, I was a mess when I got out of there. I felt like someone took the wind out of my sails. I really do feel like I get relief from the IVIG. I have been down for days since I had this appt. I just feel like giving up. In Nov I had to give put a job that I loved due to extreme pain and a new symptom of muscle weakness. That was bad enough but now this. I am so confused. My family said to ignore everything she said and continue with my Rx's. I don't want to give up on them. The reason I wanted to cancel this appt was because I really do trust the neuro and rheumo I have. I wish I had of canceled.
Sorry for the long post. Does anyone have any ideas or thoughts on any of this.
Thanks,
hopeful