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

Sorry you had such a negative experience. Although the doctor was obviously insensitive (and even sounded arrogant), she made a couple valid points. IVIG is an extremely costly medicine that does carry considerable risk. As we have discussed here for many meds...there is the benefit vs risk assessment. You don't seem to get as much benefit as would be expected. One week of minimal pain reduction (not relief) is not worth the risk...IMO And you also report side-effects as well as continued other symptoms and disability. So is it really working?

You may have some autoimmune process (40% of Sjogren's patients have negative blood work for antibodies), but your blood work now can be altered from the IVIG, so any further testing (blood) is pointless...and even for up to 4-6 moths after stopping IVIG. The NIH rare disease clinic "may" not take your case until you've been off for months.

I certainly don't have any magical answers for you. I understand your search for answers and know all about wanting to try anything that may help. My only suggestion is to stop and look at whether the IVIG is really making enough of a difference for the risk involved. Is your quality of life better and pain significantly less by the IVIG? If the answer is no, then you need to re-evaluate the Rx.

If you have not had the EMG before, then I would do so. But it sounds like you've had a full work up already.

I can totally commiserate with you, hopeful.

I had to WORK with those arrogant people... and take their
guff all the time, with me being much "lesser" in their eyes!

Neuros can be this way. It seems from all the posts I read here, that just reinforces what I learned myself... neuros can be very very cold.

Getting all psyched up and going there is draining...it has to be a very huge letdown, when treated this way.

There really can be no answers sometimes in medicine. And it is difficult to accept that.

There is a poster on MS, who has diagnosis that was hard in coming.
This is his profile:
http://neurotalk.psychcentral.com/member.php?u=552

He has written a book for people with chronic conditions, that is available on Amazon.
http://www.aboutcraigmattice.com/
He has been a great inspiration to many online.
He slowly lost the use of his legs, and it took him a LONG time to find a doctor who understood what was happening to him.

Thank you en bloc and Mrs. D. You have given me something to think about. En bloc I have a IVIG RX coming up. I think I will get that one and keep notes on how I feel and how much relief I received. I did not think about the possibility of NIH not accepting with the IVIG Rx.

Mrs. D. I'm going to go to the site you gave me later today and read about him. I am also going to get his book.

Thanks again! hopeful