Re: Doc leaving

[Guest guest]

I talked to my neuro's nurse today. She's so efficient & kind. My neuro is out of town, somewhere with a 6 hour time difference so he must be in Europe again. She's going to email him and get him to refer me to another neuro. There are several in the practice and they all sound great so I'll just have to wait and see who I get. If

Dr Baughman left town I'd be screwed! There's really no one in Kentucky I could see. At least not up here in Northern KY. I asked her to get me a prescription for a light weight wheelchair. I got a letter from Medicare that certain zip codes are supposed to go to certain stores. Fortunately it's not too far away since I don't drive. I was going to see about a scooter but after I got the prescription and the letter from my neuro the place said he didn't write the letter the right way & wanted it written like I couldn't walk in my apartment on my walker. It got to sounding fishy to me & i'm just not in the mood or shape to argue with docs & Medicare right now.I also don't know where I'd put one more thing in this messy place. LOLJoin our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

Subject: Re: Do I belong?To: Neurosarcoidosis@ yahoogroups. comDate: Thursday, April 16, 2009, 3:07 PM

,

Of course you belong here! You are most welcome here and

as you probably know, we all have a lot of the same symptoms,

yet some of us don't have certain ones and others do --- and they

may not have the symptoms we do. Sarcoidosis and Neurosarcoidosis

both are very strange diseases with many different ways they attack a

body. Just like the medicines we take. What helps you might not

help the next person and what helps me might not help you. That

is what makes it such a frustrating disease. We have lots of links

and lots of files here and everyone is welcome to view them and

study them. You are welcome to stay part of our family and help

others as we do. Each of us have our little strange quirks with this

disease so do not feel that you do not belong.

Sending lots of hugs,

Darlene

NS Co-Owner/Moderator

Do I belong?

I haven't posted in months. This is because I am not sure if I belong to this group. I have many of the symptoms of NS. One neurologist I saw in 2006 decided even though they couldn't biopsy, he thought it likely. My current neurologist says my disease is autoimmune caused. My immune system is attacking the myelin sheath of 7 cranial nerves. What I have they have never seen before, but it is responding to Remicade. I am on several drugs, all the same as many of you are on - Remicade, Imuran, Prednisone. I have been sick for 9 years.So I've decided to let you all decide. I have no support group since I have a weird diagnosis, not a recognizable condition. NS is the most similar condition to what I have. Let me know what you

think.