's message--attn Terri

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Terri, I hadn't deleted 's message yet, so sent it on through for you.

Ramblin' Rose

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A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: I wondered if anyone else feels the same?Date: Fri, 31 Aug 2007 05:51:42 -0000

Hi Rick,Several weeks ago my Neuro is trying to reduce my Pred a little too quickly and I noticed headaches every day almost immediately. I had originally been on 80mg per day, and he dropped me down to 80mg one day and 40mg the next day. I didn't get any better symptom-wise, but it did shrink the Sarc in my spinal cord and brain stem quite noticeably. He then dropped me down several months later to 60mg one day and none the next day. This was several weeks ago and the one where I really noticed the headaches. I spoke with the on-call doc this past Monday due to my neuro being out of town, and he told me to take 30mg on the days my neuro had me not taking any. I have noticed I am getting fewer headaches and they are more mild and don't last very long. I have noticed that the pain in my neck has gotten worse in the last several weeks and it is radiating down my spinal cord to the middle of my back, and I am extremely lightheaded and sometimes feel as if I am going to black out. I was the one who really wanted to reduce the Pred, but it looks like we are going to have to do it much more slowly. To the NS group,I am not new to the website, but I haven't written in a long time. I have been reading the messages almost every day since May (when I was able to get the Internet back up). You may remember me as Bobblehead (you guys teased about that...by the way, where is ?). I am only on Prednisone...haven't had any Solumedrol IV's since March. I have asked my Neuro about adding other medications to the Prednisone to see if my symptoms would ease up. I have been diagnosed with NS in the spinal cord and brain stem, and just recently they removed what they thought was a cyst from my female area, but I took the pathology report to my Neuro when I saw him several weeks ago and he said it was a Sarcoid...I said "Down There???!!!" I guess you can get Sarcs anywhere!!! Sorry if that embarrassed anyone! Anyway, my Neuro doesn't seem to want to add any other meds to the Pred since it has helped to shrink the Sarc. I'm just getting really frustrated because my symptoms are still as bad as ever. I have numbness and tingling in all of my extremities as well as from my shoulders on down to my feet. I have joint pain in my knees, weakness all over, extreme fatigue (I sleep a ton!), neck and back pain, bobblehead, unsteady, blurry eyes, foot cramping, coughing and choking, lightheadedness and headaches. I have to use a cane to get around, and at that I cannot walk far...I pretty much ride my recliner all day long. Also, the fat around my face makes me feel like I'm going to suffocate at times! I have been at home from work since October of last year and am just waiting to hear from SSA...I should be hearing from them within the next several weeks...cross your fingers!Anyway, just thought I'd update all y'all...I guess I finally felt like typing it all out, plus I've been a little discouraged with my symptoms not improving and my quality of life becoming so stagnate. Thanks for letting me vent!!! from Utah >> Hi,> I'm coming off prednisilone as well and have been getting many headaches (behind the eyes), I never had these before. I'm scheduled to see my Dr. in two weeks and will ask...but I was wondering if anyone else is experiencing the same. > Rick

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