RE: New to group Ohio

[Guest guest]

Hi Kathy,

Welcome to our group. We are happy you found us but

sorry to hear you have the old Sarc Monster! We have about

550 members now from all over the world and most are very

happy to help answer questions and offer help. Please feel

free to ask any questions..............the only thing I will caution

you about is to be patient for an answer. We are all sick here,

including myself and my co-owner and all the moderators. We

have 5 moderators with 4 being active. They are Rose, Debbie,

Theresa, and Marla. The owners are myself (Darlene) and

Tracie. Like I said, we are all sick but usually can answer the

questions in a day or so. Someone will get you an answer. We

also have lots of info in the Archives as well as the File section.

Please feel free to browse both these -- you will find lots of info

there.

Again, welcome and we wish you well.

Hugs,

Darlene

NS Co-Owner/Moderator

New to group Ohio

Hi everyoneI just want to introduce myself to everyone.My name is Kathy and I am from Shelby, Ohio and I am 39 years old.I have had sarcoidosis for about 15 years. The last 5 years I have had no symptoms and not been on any treatment for it. Now, all of a sudden it is back, confirmed by biopsy. My lymph nodes in the pelvic/abdominal area are all inflamed, spleen is enlarged, as well as low platelet count, and a lesion on my brain. The lesion on my brain and nerosarcoidosis is something brand new to me. When I had active sarcoidosis before, it was everywhere except my brain and lungs.I am being followed this time at the Cleveland Clinic. They seem to have an excellen Sarcoidosis Center. I have now had my 2nd injection of the methotrexate. It is great to have a specialist close to home. When I was first diagnosed all those years ago, the closes specialist was in Cincinati.I am very happy to find this support group, specially with all the new symptoms from the neurosarcoidosis, and not being familiar with it at all.Kathy

[Guest guest]

Hi, Kathy. Welcome to this special group of people. I hope you don't mind if I ask you some questions about your experience with the Sarc Monster. I have been "in remission" and off meds for 3 years. Although I wasn't keen on continuing the lovely toxic sarc meds without active disease, there is always that nagging fear that the Sarcster will rear his ugly head somewhere without warning. I started with enlarged hilar nodes in 1994, no symptoms & lungs clear; told it would probably go away & pretty well forgot about it. 5 years later, within a 6-month time frame, lost hearing in both ears & had a Bell's palsy; all blamed on viruses. Got hearing aids & went on with life. A year later, sudden onset of facial itching, severe fatigue & poor appetite, followed over the next few months by muscle weakness, leg pain, electric shock sensations in legs & tremors, and a second Bell's palsy. Developed lung fibrosis, brain fog & peripheral neuropathy. Eventually diagnosed with NS, treated with Pred, Imuran, later Methotrexate. I've seen a couple of the best sarc/NS docs in the world--Barney Stern at Emory U. in Atlanta (now in Baltimore) & Baughman at U. of Cincinnati; also followed at Ind. Univ. Med. Center in Indianapolis & have a pretty great local neurologist. All are of the opinion that the sarc is no longer active & my symptoms are from permanent damage. I feel that the neuropathic pain in my feet is worsening, which worries me a bit.

Would you mind sharing a brief history of your symptoms & treatment, experience off the meds & what occurred to diagnose relapse? Thanks for any info you would like to share.

Rose in Indiana

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: kathyfoster_cma@...Date: Sun, 18 Jan 2009 22:02:16 +0000Subject: New to group Ohio

Hi everyoneI just want to introduce myself to everyone.My name is Kathy and I am from Shelby, Ohio and I am 39 years old.I have had sarcoidosis for about 15 years. The last 5 years I have had no symptoms and not been on any treatment for it. Now, all of a sudden it is back, confirmed by biopsy. My lymph nodes in the pelvic/abdominal area are all inflamed, spleen is enlarged, as well as low platelet count, and a lesion on my brain. The lesion on my brain and nerosarcoidosis is something brand new to me. When I had active sarcoidosis before, it was everywhere except my brain and lungs.I am being followed this time at the Cleveland Clinic. They seem to have an excellen Sarcoidosis Center. I have now had my 2nd injection of the methotrexate. It is great to have a specialist close to home. When I was first diagnosed all those years ago, the closes specialist was in Cincinati.I am very happy to find this support group, specially with all the new symptoms from the neurosarcoidosis, and not being familiar with it at all.Kathy Hotmail® goes where you go. On a PC, on the Web, on your phone. See how.