Re: Re: Checking in with you all...........

[Guest guest]

Matt,

We do have an increased chance of TIA's-- (Transient Ischemic Attacks, mini strokes) with sarc. With the seizures and the slurred speech, you should take her into ER and have them check that she doesn't have any blood clots going on. I know that the vasculitis of the brain impedes whatever section of the brain where there is inflammation-- but anything like this needs immediate eval.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sunday, September 27, 2009 1:05:14 PMSubject: Re: Re: Checking in with you all...........

Squire Will:I know exactly what you mean. I am the care giver for my wife . We were moving along Ok when it seems that the meds suddenly fail. For quite awhile we were on methotrexate which seems to have stopped working and her issues got worse. She has neurosarcoidosis with lesions in the brain. Now they are trying cellcept which I am not sure is working at all as her issues seem to again gotten worse. Just this weekend she had several seizures and is barely able to form any words that I can understand. I have a call into the docs and await their reply....hopefully sooner than later. It is very hard to see a loved one suffer this way.I will say some extra prayers that things settle down for you and for everyone else in the group. Matt

From: squire_will <squire_will@ yahoo.com>Subject: Re: Checking in with you all......... ..To: Neurosarcoidosis@ yahoogroups. comDate: Sunday, September 20, 2009, 9:54 PM

Hi. Just trying to get over the shock of our setback. My son has been fighting Sarcoidosis for a few years now, and after several different medications, a round of Kemo and various other things, he was said to be in 'remission', that is to say, the 'tumors' in his brain were shrinking to tiny spots and the ones in his lungs were clearing, then we turned around and suddenly everything seems to be back where they were (no different than at the height of the illness). We were so happy, then our happiness was shattered. Currently, we are at a lower ebb than when we didn't know where to go.Hopefully, doctors are researching this malady and are soon to find a cure. Keep us in your prayers.Squire Will, father of the victim>> Hi everyone,> I have been checking the messages several times a day and we have not had a message for two days! That is unbelieveable with 600 members!> I sincerely hope that you are all busy and NOT ill! How about checking in and letting us know you are ok....we really do care and worry when we do not hear from you. You do not have to write a book......just send a note and say, "I am here and doing ok"......or if you are really ill, let us know and we will keep you in our prayers or send get well wishes. > Our Moderators are all ill at the moment and my Co-Owner (Tracie) is also ill and fighting to get back on her feet. Keep her in your thoughts and prayers.> I am doing ok......have a bad day and a good day....you all know how that is, I am sure. Please take care and stay as well as you can.> Sending lots of hugs and well wishes.> Darlene> NS

Co-Owner/Moderator>