Re: Checking In - new member

[Guest guest]

Hi . Welcome to the group . You will find a lot of support and info here. (Look in the archives , best looking for info) Otherwise new friends here will help you out.

I was diagnosed in spring of 2003 with a biopsy of the skin.

You have been through quite a battle and I hope you will improve more.

Any questions, don't hesitate to ask. Friends here are very helpful.

Stay strong,

Debbie T.

Co-moderator

Subject: Re: Checking InTo: Neurosarcoidosis Date: Saturday, January 31, 2009, 6:56 PM

Hi Everyone,

I have NS in the brain and spinal cord-Diagnosed in Oct, 2008. Prednisone 60mg daily since diagnosed have shrunk the brain and spinal lesions somewhat. They are calling them lesions, because both are in and not on the brain and spinal cord, they cannot biopsy for a definitive diagnosis. I am being treated at the mayo clinic in Rochester, Mn. They continually check for M.S. and Lymphoma, which has always come up negative. I am ambulatory, have some trouble with balance, for which I go to Physical Therapy. Continue to have decreased sensation from left foot up to breast line front and back. Also have decreased sensation right foot up to mid calf. I have the sensation of when I need to use the bathroom, but have no sensation of actually completing the act.I was having trouble with word find and memory before I was diagnosed, but that has cleared since I was started on Prednisone.

Battling now with muscle weakness which they say is due to the Steroids. Increased appepite and fluid retention are also issues. I only have one kidney and the steroids are affecting the function somewhat. The Mayo was unable to give me a prognosis of the course of my disease, just stating," we don't treat enough of this type to give you that answer." So, my goal is to research everything I can on this disease to help my odds.

I am very interested in the patient conference being held in March.

With keep everyone in my thoughts and prayers, as we journey on down this road that life has presented us with.

I am fairly new at this computer thing, so bear with me-Thank

To: Sarcoidosis <neurosarcoidosis@ yahoogroups. com>Sent: Friday, January 30, 2009 4:52:47 PMSubject: Checking In

Hi everyone,

It is time for a roll call so please check in and let us know what is going on in your lives ........with approx 550 members, we should never have a slow day on the list....... As for me, I have been fighting a sinus infection with all this weather. We had snow flurries on Sunday, got about 6 inches of snow on Monday, another 6 inches on Tuesday and then about 1 inch last night....... ...so we have about 13 inches of snow and it is bitterly cold. I LOVE my snow, so I am not complaining, but lots of people do not like snow, including my hubby. I have always loved it but am afraid to get out in it much anymore for fear of getting sick again......

I would like to say hello to the new members. I have tried to welcome them, but I know I missed several. Same thing with the birthdays... ......hope you all had nice ones. I have been having lots of trouble with my computer.... ... it has been a really good one, but it is 5 1/2 years old and it keeps crashing and losing some of my files. I am going to have to shop around for a new one. I hate that because I really like my old one.

Ok, guys and gals, I have rambled on and on, so now it is your turn! Please do check in and let us know how you are.

With love to all,

Darlene

NS Co-Owner/Moderator