Re: frightening movement

[Guest guest]

HI MARLA AND ALL OF THE KIND PEOPLE THAT ARE APART OF THIS GROUP.MARLA YOUR TIMING WAS FIND.I AM GLAD YOU COULD IDENTIFY WITH WHAT I WAS TRYING TO EXPLAIN.I TAKE 0.5MG OF LARAZAPAM AND THE DOCTOR INCREASED THE NEUROTIN TO 800 MG THREE TIMES A DAY. I HAVE A MRI SCHEDULED FOR TUESDAY.I HAVE NEVER BEEN ON REMICADE.ONLY PRENISONE,PLAQINILL AND NEURONTIN. I HAVE TO FIND ANOTHER LUNG DOCTOR TO TREAT MY SARCOID.MY HUSBAND'S JOB CHANGED INSURANCE AND MY DOCTOR DOSEN'T TAKE THE NEW INSURANCE. HAVING THE ENTIRE GROUP AVAILABLE HAS BEEN A BLESSING TO ME.IT ALLOWS ME TO KNOW HOW YOU ALL ARE FEEING AND IT ALLOWS ME TO ASK QUESTION AND VENT IF I NEED TO.I BELIEVE GOD IS

STILL GOOD DESPITE MY STRUGGLE WITH SARCIODOSIS. LET'S SEND A PRAYER FOR OUR BROTHERS AND SISTER IN HAITI. AS YOUR DAY SO MAY YOUR STRENGTH BE.HELENTo: Neurosarcoidosis Sent: Sat, January 16, 2010 11:11:56

PMSubject: Re: frightening movement

Helen, I'm sorry I didn't get back to you sooner. I have deep nerve spasms, I find they are worse as I get closer to time for Remicade, then not so much for awhile, my left side is worse for pain, numbness and that is also where I get

this funny electrical activity, I explained it to my doctor and he said it was nerve related, it keeps me awake sometimes too, he told me to take an extra Lyrica, but that gave me a buzz and kept me awake, so now we agreed I would take an extra Lorazapam which I use for restless legs, it helps. The best treatment is getting Remicade, which I get every 5 weeks. I hope you are doing better, and I will try to get back to you sooner, you are in my prayers.

Marla On Tue, Jan 12, 2010 at 2:10 PM, Helen <hmwalker9 (AT) yahoo (DOT) com> wrote:

HI MELANIE,DARLENE, MATT AND THE ENTIRE GROUP,THANKS FOR RESPONDING TO MY LOG.MY NEW NEUROLOGIST CALLED ABOUT 11PM LAST NIGHT.HE IS GOING TO HAVE HIS NURSE SCHEDULE AND MRI.HE DOES NOT WANT INCREASE MY NEUROTIN WITH SEEING IF THE NEUROSARCODOSIS HAS GOTTEN WORSE.HE FEEL THAT THERE IS A POSSIBILITY THAT THE NEUROTON IS NO LONGER EFFECTIVE.AGAIN THANKS EVERYONE.IT IS THREE PM AND I HAVE BEEN UP SINCE NINE PM YESTERDAY DUE TO THE MALFUNCTION IN MY BRAIN.PLEASE KEEP ME IN YOUR PRAYERS.

AS YOUR DAY SO MAY YOUR STRENGTH BE.HELEN

From: Shand <shanniemel (AT) yahoo (DOT) com>Subject: Re: frightening movement

To: Neurosarcoidosis@ yahoogroups. comDate: Monday, January 11, 2010, 12:07 AM

Helen, I'm sorry you're having such an awful go of it. Perhaps you could try taking transderm scopalamine patches. YOu just put it behind your ear, and it helps a lot with dizziness and the nausea that sometimes accompanies it. Do you take any neuroleptics or Reglan/Metocloprami de? They can cause a thing called Tardive Dyskinesia which is involuntary jerking movements.

I'll be thinking of you, and keeping you in my prayers....your friend,

To:

Neurosarcoidosis@ yahoogroups. comSent: Sun, January 10, 2010 4:28:07 AMSubject: Re: frightening movement

Dear Helen,

Oh my.......... I am so sorry you are going through this........ .I have

never had this problem or even heard of it, so I cannot help you, but I

will keep you in my thoughts and prayers. Perhaps someone else on

the list will know of this. Stay strong and know we are all here for you.

Hugs,DarleneNS Co-Owner/Moderator

frightening movement

HI EVERYONE,I HOPE THIS MESSAGE/QUESTION FIND YOU ALL DOING WELL.I HAVE SARCOIDOSIS IN MY LUNGS-3rd STAGE,MY EYES,BONES AND BRAIN. I AM EXPERIENCING SOME EXTREME POWERFUL MOVEMENTS IN MY HEAD.THE MOVEMENT FEELS LIKE STRIKES OF LIGHTNING.IT LAST ONLY A FEW SECONDS AND I HEAR THE SOUND IN THE LEFT EAR ALTHOUGH I HAVE TOTAL HEARING LOST IN THAT HEAR..THE SOUND SEEM TRAPPED INSIDE.IT SOUND LIKE A PASSING VEHICLE THAT PAST YOUR CAR WHEN YOU HAVE THE WIND DOWN ONLY A LITTLE. IT ALSO SOUND LIKE A ELECTRICAL CORD SHORTENING OUT.THE MOVEMENT HAPPENING WHEN I TRY TO GO TO SLEEP OR IT WAKE ME FROM MY SLEEP.I SOMETOMTES HALLOW SO LONG MY HUSBAND AND CHILDREN COME RUNNING.WHEN I AM TRYINY TO GO TO SLEEP IT MAKES MY BODY JERK IT USUALLY HAPPEN ON THE LEFT SIDE IF MY FACE AND HEAD WHERE THE NEURO SAR IS BUT IT HAS BEGAN TO HAPPEN ACROSS MY ENTIE FACE AND INSIDE MY MOUTH NEAR MY THROAT.IT CAUSES ME TO LOSE A LOT OF SLEEP.I AM ON EFFEXOR XR,NEUROTIN, ANTIVERT ASNEEDED AND I RECENTLY STARTED TAKING LORAZEPAM O.5MG NIGHTLY.I HAVE NOTICE THAT WHEN MY SUGAR IS HIGHER THAN 120 THE MOVEMENTS IN MY HEAD START.WHEN I AM AWAKE I CAN FEEL THE MOVEMENTS AND HEAR THE SIDE THE DEAF EAR.IT CAUSES ME TO BE SO AFRAID OF WHAT I DONT KNOW,PREHAPS A SEIZURE.ANY ADVICE WOULD BE APPRECIATED.

HELEN