Is it even possible to find a doctor who cares?

 

Hello everyone,

 

So I’ve been getting worse which is kind of my thing at this point. The pain has decreased which is nice but the CNS issues are much worse. My shakes are constant and worse than ever. I keep dropping things. My sense of touch is greatly diminished and has been for some time now. Now I have numbness that moved from my left toe all the way up my left leg. That’s fun. I have seen a supposed MS expert a few times now. Last time I saw him was 3 weeks ago. He said my brain MRI was very unusual and he wanted to get another opinion. He told me he could call me in a day or two. Of course I never heard from him. So I have called his office 5 times now and he still hasn’t called me back. It’s getting ridiculous. He said in MS patients there is often white matter near the ventricles on scans. In my case white matter is completely surrounding both of them. (Lucky me!) He said he’s never seen anything like that. The only good news, if there is any, is that there is no white matter on my spine. So, you know, I’m a little worried here all things considered. And the one person who might be able to shed some light on the situation won’t return my effing calls. Ug. This is the 4th neuro I have seen. No one knows what to tell me. I am and have been treating my Lyme but I keep getting worse, not better.

 

I've never seen a neurologist that is lyme literate. I gave up on neurologists. But yes, you can find a good LLMD, they are out there!

there is a neurologist in washington, dc that is LL. It does take awhile to get in to see him though. Perhaps if you find a caring neuro they can consult with him?

Also are you on anything specific for the white matter? I know a lot of people have had success with LDN but I am not too familiar with it.

"and then fired her." (THUNDEROUS applause)

Physicians take an oath to "do no harm". As a profession, they are acting criminally. Not out of malice but out of hubris and arrogant ignorance. I—we all would be fired if we approached our jobs this way.

Fire anyone who approaches YOUR health and their professional oath with such disdain.

After being punted around by my HMO doctors (who were really "nice" and eager to treat any other ailment with the help of pharmaceuticals!) I ran to an ND. She also "cared" and didn't think to question lyme & co… I think she diagnosed my symptoms expertly but 4 yrs and $22k later, we still did not know what was causing all those sx and I doubt had I stayed we would ever have made any progress. After getting tested & diagnosed w/ lyme & co. I sent her an email to let her know what was going on. NEVER heard back. That told me a lot about her.

That said…my LLMD gave me 3 hugs during my first appointment with her. Granted, by then it was 6 mos. after I'd initially made the appt. so I was armed with a helluvalotta research, information, and questions. But there ARE a few gems out there. I only hope that you can all find one and that some day… some day (I VOW) there will be many more because these infections will be more understood and less politically feared.

-p