RE: Here I am!

[Guest guest]

Hi, Boo! Welcome to the NS family. As you may know, we have nearly 500 members from all over the world. I'm glad you found us, but as Bonnie (I think) said, I wish it didn't take a chronic illness to bring us together. Where do you live? There aren't many sarc support groups & I don't know of any that are exclusively for NS, although many cities have groups for chronic illness & chronic pain, which can be helpful. Did you have a lymph node or lung biopsy for the hilar adenopathy? When were you treated with the Prednisone & did you have a symptom-free period before the peripheral neuropathy started? Sorry if this feels like an interrogation! Sometimes it's easier to answer questions & provide resources when we know a little more about your situation. Re: treatment, I can't say it any better than our own Co-owner/moderator Tracie (from a recent post to another new member):

The MD's love to give us prednisone -- and yeah, it takes the inflammation down fast--- but with you already showing signs of multi-systemic disease-- you need more than just prednisone.

Plaquenil, Methotrexate, Imuran, Arava, all have shown to be helpful with different systems. My lungs respond to the Plaquenil, my joints and spine need the Methotrexate for the sarcoidosis-induced arthritis. My brain has responded well to Remicade.

You will find that it will take a custom cocktail of meds that will suppress your immune system to keep this from advancing.

What kind of doctors have you seen? I'm not sure about the response time for Plaquenil; those who have taken it can respond to that. I know that MTX can take 3-6 mos. As Tracie said, more than likely you'll need more than one drug. I am 58, mom of 3 grown children, with 7 grandkids. I'm also retired on disability after practicing as a nurse-midwife for 20 years, and working as a labor & delivery nurse for 10 years before that. For the full story (get comfortable, with a cup of tea & a snack; it's a long one!), read the attachment.

This is a great place to get & share info and support, to vent (we do ask that you warn us in the subject line of anything more than mild profanity), and to laugh, cry, be silly, whatever it takes to cope. Remember that the moderators & list members are also sick (or busy taking care of sick loved ones), so it may be a day or two before we answer an email. Occasionally, the cyber gremlins grab a message & hide it, so if we haven't responded in a reasonable period of time, don't hesitate to ask again. For some reason, I don't always get messages that everyone else on the list gets.

Be sure to check out the other sections, including Links, Archives (Darlene, co-owner/moderator) is slowly pecking away at the messages, cleaning out the dross & changing subject lines when needed, but you can still find a wealth of info by typing in a subject/topic), Photos (see what some of us look like; especially scary for Halloween!). All of these are listed at the bottom of this & all other group emails. We also have a chat room, which is open 24/7. Right now we only have one chat scheduled, the Faith Chat at 4pm on Sundays, and I know I haven't been able to make it the past 2-3 weeks because of family commitments, but let us know if there is a time you'd like to chat & one of us may be able to meet you, as well as some of the list members.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Help yourself to FREE treats served up daily at the Messenger Café. Stop by today!

[Guest guest]

Hi, Boo! Welcome to the NS family. As you may know, we have nearly 500 members from all over the world. I'm glad you found us, but as Bonnie (I think) said, I wish it didn't take a chronic illness to bring us together. Where do you live? There aren't many sarc support groups & I don't know of any that are exclusively for NS, although many cities have groups for chronic illness & chronic pain, which can be helpful. Did you have a lymph node or lung biopsy for the hilar adenopathy? When were you treated with the Prednisone & did you have a symptom-free period before the peripheral neuropathy started? Sorry if this feels like an interrogation! Sometimes it's easier to answer questions & provide resources when we know a little more about your situation. Re: treatment, I can't say it any better than our own Co-owner/moderator Tracie (from a recent post to another new member):

The MD's love to give us prednisone -- and yeah, it takes the inflammation down fast--- but with you already showing signs of multi-systemic disease-- you need more than just prednisone.

Plaquenil, Methotrexate, Imuran, Arava, all have shown to be helpful with different systems. My lungs respond to the Plaquenil, my joints and spine need the Methotrexate for the sarcoidosis-induced arthritis. My brain has responded well to Remicade.

You will find that it will take a custom cocktail of meds that will suppress your immune system to keep this from advancing.

What kind of doctors have you seen? I'm not sure about the response time for Plaquenil; those who have taken it can respond to that. I know that MTX can take 3-6 mos. As Tracie said, more than likely you'll need more than one drug. I am 58, mom of 3 grown children, with 7 grandkids. I'm also retired on disability after practicing as a nurse-midwife for 20 years, and working as a labor & delivery nurse for 10 years before that. For the full story (get comfortable, with a cup of tea & a snack; it's a long one!), read the attachment.

This is a great place to get & share info and support, to vent (we do ask that you warn us in the subject line of anything more than mild profanity), and to laugh, cry, be silly, whatever it takes to cope. Remember that the moderators & list members are also sick (or busy taking care of sick loved ones), so it may be a day or two before we answer an email. Occasionally, the cyber gremlins grab a message & hide it, so if we haven't responded in a reasonable period of time, don't hesitate to ask again. For some reason, I don't always get messages that everyone else on the list gets.

Be sure to check out the other sections, including Links, Archives (Darlene, co-owner/moderator) is slowly pecking away at the messages, cleaning out the dross & changing subject lines when needed, but you can still find a wealth of info by typing in a subject/topic), Photos (see what some of us look like; especially scary for Halloween!). All of these are listed at the bottom of this & all other group emails. We also have a chat room, which is open 24/7. Right now we only have one chat scheduled, the Faith Chat at 4pm on Sundays, and I know I haven't been able to make it the past 2-3 weeks because of family commitments, but let us know if there is a time you'd like to chat & one of us may be able to meet you, as well as some of the list members.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Help yourself to FREE treats served up daily at the Messenger Café. Stop by today!