Idiopathic.....really?
 

Hi everyone,
So my full body SFN is getting progressively worse....I'm in so much more pain now, I can barely feel the top of my right hand and am beginning to drop things:-(. My stomach is in terrible shape. My neurologist told me to come back in 3 months....really are you kidding me, I walked out of that office last week and am never going back. I went to see my Primary care Doctor today, I had Liza Janes spread sheets in hand, I told him that he needed to do the tests on this spread sheet, he said he had never heard of some of them, like the Anti-Hu, Ro, and Ri, I said well you better find out what they are because I'm getting them done TODAY,and anything else you think I need to have on this list, I also told him I needed a referral to another neurologist because I would not be going back to someone who told me to come back in 3 months, even though I went to him in the first place because my symptoms and pain are worse ( really...are you kidding me!) I also told my Doc that that my stomach is really bad, Nauseaous, and painful, so he quickly gave me a requisition for a gastric emptying study...I just told him, you need to help me and I'm not taking being put off anymore, if you can't help me then I'm moving on until I find someone who will! He spent an entire 45 minutes with me today. I'm telling you I used to be mild mannered when I went to the Doctor...that was not the case today! I'm almost 60 years old and I'm falling apart, and they need to try and find out why. They took a ton of blood today, and sure enough found out what the paraneoplastic blood tests were and I had those done as well as others on Liza Janes spead sheets. I'm through fooling around, I need to find out why I'm so ill and not getting any relief. Thank you all for your help on this forum...you have been a tremendous help to me.... On one last note, my Doctor said, look if we absolutely cannot find a cause maybe we should think about sending you to the Mayo Clinic! Lol! I think I finally have someone's attention. Thank you Lord! Blessings to all of you! Jan

I agree with going to Mayo or one of the clinics that specialize in PN. Even then, you may need to go outside of the mainstream medical system. There are many problems they are not able to handle, especially chronic diseases.
Ron

Idiopathic...really?
 

You are right Ron, I have something very serious going on here and I think Mayo might be something I need to consider. I live in California, so the Mayo in Arizona is closer to me then the one in Minnesota, I called the one in Arizona though and they told me that they were not as big as the one in Minnesota and that because of the complexity of my case I should probably go to the one in Minnesota. Something I need to think about.

Its good that you were proactive in getting the blood work done. Now while you are waiting for the results, I would recommend setting up an appointment with another PN neurologist. That can be a long wait also. Probably about 2 months.

Why?
 

Kudos for you!
The reason for the question is why does a mild mannered person have to get so :mad: before we get some help?
I too feel I was a mild person, and when I get to the point of boiling over, I still am pretty calm..but when I lose it I feel so bad but guess what? Oh, your in pain love? WHAT THE HECK, I only been telling the medical field this for years!
So good for you, keep us posted and I wish you the very best care.:grouphug:

Excellent!!! It's sad that we mild-mannered people can be driven to this point, but the apathy from doctors is beyond ridiculous.

Please keep us up to date on what's going on, ok?