Sarcoidosis and possible brain ailment

It seems every day more and more people raise questions about sarcoidosis. I will be adding blog entries and as many resources as I can. As I bring these resources together I hope they are beneficial to you the reader.


[This discussion originally appeared on the Sarcoidosis Facebook wall]

Bree Berry: Just wondering if anyone has had problem with short term memory loss and being able to focus or think clearly after being on prednisone?

Wendy Leslie Vekich: That is a yes

Rubina Shreiner: not me, but it can be a side effect.

Carl DeLine: very common for me…

Sherri Russo-Velte: Big yes. I was on 60mg a day, at the time I was selling engineering design software. I was in a demo that I had done 10’s of times and completely lost the words, just couldn’t find words that would make sense.My technical person finished my sentences. On several other occasions I would be driving to work or home and suddenly realize I didn’t know where I was, even though I had driven that same route every day for 3 years. Scarey and really, really frustrating. I wish you well.

Carl DeLine: When I read this to my wife I explained how on many of my trips I just kept going because I believed I was going in the right direction. Your description is so accurate it is scary…take care.

Sherri Russo-Velte: Oh, I’m soooo sorry anyone else has experienced those symptoms. I haven’t met anyone else who had those side effects. One of my Dr’s thought I was nuts – I fired him and got another. If it weren’t for the mega dose of prednisone I wouldn’t be alive. Take care.

Frank Thompson: I have had many disturbing neurological symptoms. At one point, I completely lost my short term memory for some months. This was about 4 years ago when I was in the worst shape. I had a CT scan of my head that showed a void in my right temporal lobe. It was attributed to the sarcodosis. I was afraid that my short term memory would never come back. I could answer any technical question and remembered all of my old work activities and engineering, just no concept of anything from the same day. It was a long journey with many medication changes before my short term memory came back. Now I take less medicines and have my short term memory; however, ocasionally, I find myself concentrating on a problem, and when called to discuss another issue, I can’t focus on it and sometimes I can picture what I want to say, but can’t put it in words. And this is a big improvment over the past. This is a chalenging ailment. I am now wearing an Ambilary EEG that records my brain waves for the nurologist to see if it can be addressed. Sarcadosis affects everything. Keep the faith and don’t let things slide. Good Luck,

PS I have not been on facebook for several months because I could not remember my passord. My wife remembered It. UGHHHHH.

Carl DeLine January 2 at 9:22pm
Thank you Frank. So much about sarcoid is disjointed and disconnected. I will share this with my Dr. Also do I have permission to share your story on my web site. My sarcoid page is not published yet but this week it will be. I would like to add this to it. carl.

Frank Thompson February 20 at 7:02pm Report
Carl: Believe it or not, this is the next time I have been well enough to go to facebook. You may share my story with anyone. If it helps anybody, nobody will be more glad than me.

PS: I have taken some major action in my search for some treatment and relief. I have some theories I would like to try out on myself. My body’s condition has improved from virtual cripple to very out of shape. After 6 years, I’m getting a hang on what it takes to live with this affliction.

Carl DeLine February 20 at 9:15pm
Thank you Frank, I do understand. It has taken time to rekindle patterns. It seems that when a pattern gets established a new variable is introduced and then re-patterning has to begin again. My prayers are with you. Thanks for the freedom to share with others. carl.

Mine Aldemir: yes , i take short term pred (3 days only) for asthma and i forgot to pick up my daughter from school

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