Re: HELLO EVERYONE

[Guest guest]

Hi Barb,

BE ENCOURAGED.AS YOUR DAY SO SHALL YOUR STRENGTH BE.I HAVE SARCCOIDOSIS OF THE LUNGS,EYES,BRAIN ANDI HAVE SARCOID ARTHRITIS.

HELEN

Subject: HELLO EVERYONETo: Neurosarcoidosis Date: Sunday, December 28, 2008, 10:14 PM

HI EVERYONE ! HOPE ALL IS WELL WITH YOU AND YOUR FAMILIES. I WENT TO CLEVELAND THE DAY AFTER X-MAS AND WAS TOLD I HAVE TO SEE A PULMONARY SARC SPECIALIST AND A NEURO IMMUNOLOGIST (WHATEVER THAT IS). I HAVE SARC OF THE SPINE ,BRAIN AND LUNGS. LAUGHING JUST ABOUT KILLS ME FROM SHORTNESS OF BREATH. THANK YOU ALL FOR THE PRAYERS AND BLESSINGS I WISH THE SAME FOR ALL OF YOU. DO ANY OF YOU KNOW IF CERTAIN FOODS OR VITAMINS HELP THIS? I HAVE A LOT OF INVOLUNTARY FACIAL AND MUSCLE SPASMS. I AM HAVING GREAT DIFFICULTY WALKING AND GETTING AROUND . I WAS JUST DIAGNOSED IN AUG OF 08 . SOME OF YOU HAVE BEEN DEALING WITH THIS MONSTER ALONG TIME. I AM TRUSTING GOD I AM BEING LED TO THE RIGHT DOCTORS,MEDICINES, AND SUPPORT GROUPS.!!!!! I CAN'T UNDERSTAND HOW SOME OF YOU ARE WORKING I HAVE TROUBLE JUST TO GET UP TO ANSWER THE PHONE.!! DON'T GET ME WRONG I WILL NOT LET THIS BEAT ME!!!!!!!!!!

!! HAVE A BLESSED AND PAIN FREE DAY YOUR FRIEND BARB

[Guest guest]

hi i took the medicine sinemet (which is what i think you were trying to say) and a had a severe side effect of it . i had more tremors than when i first started !! i would suggest that any new meds are taken under the supervision of a doctor. i have had too many weird reactions !! good luck !

To: Neurosarcoidosis Sent: Sunday, August 9, 2009 2:22:21 PMSubject: Re: Hello Everyone

Hi to all. We have returned from New Hampshire. Actually had a good time. Nice weather and we were able to relax. Couldn't do a lot of the walking stuff but we made out Ok. is on Prednisone. 6 mgs a day. we don't get shaking from that. She has tremors in her right hand as a result of the neurosarc damaging the brains ability to manufacture dopamine which keeps the muscles in check, We might have to lokk at a med replacement like setmet?? I have to begin looking up info. Our side effects of the prednisone have been bone related where the higher doses started to rob the clacium from her bones making them brittle. Actonel & Oscal have helped thatHope all are as OK as they can be.Matt

Hi everyone! Sorry I haven't been very active lately. I've been feeling a little crappy and have had tons of appointments for tests, docs etc... I know you all understand what that's like! My sarc is now cardiac too as well as neuro, lymph, pulm and joint. The docs decided (after many CT scans and mri's) that the cellcept/pred combo isn't working. They now have me starting methotrexate/ plaquenil/ pred combo. I started today and notice some very weird tingling in my face/head as well as strange muscle twitching. Anyone have any input on this? I hope you all are doing well- you remain in my prayers!Dawn

[Guest guest]

Yes I would like to head back up that way in the fall to see the leaves changing colors. I think it would have to be earlier than here in PA as it gets cold and snowy early they tell me. Hope all are well. Matt

Hi everyone! Sorry I haven't been very active lately. I've been feeling a little crappy and have had tons of appointments for tests, docs etc... I know you all understand what that's like! My sarc is now cardiac too as well as neuro, lymph, pulm and joint. The docs decided (after many CT scans and mri's) that the cellcept/pred combo isn't working. They now have me starting methotrexate/ plaquenil/ pred combo. I started today and notice some very weird tingling in my face/head as well as strange muscle twitching. Anyone have any input on this? I hope you all are doing well- you remain in my prayers!Dawn

[Guest guest]

Thanks for the info. Yes that is the med they are suggesting for the tremor of her right. side. We will progress slowly & with doctors care as they have tried a couple others previously with disasterous side effects. Thanks. Matt

Hi everyone! Sorry I haven't been very active lately. I've been feeling a little crappy and have had tons of appointments for tests, docs etc... I know you all understand what that's like! My sarc is now cardiac too as well as neuro, lymph, pulm and joint. The docs decided (after many CT scans and mri's) that the cellcept/pred combo isn't working. They now have me starting methotrexate/ plaquenil/ pred combo. I started today and notice some very weird tingling in my face/head as well as strange muscle twitching. Anyone have any input on this? I hope you all are doing well- you remain in my prayers!Dawn