Re: group is quiet

[Guest guest]

Hey there Tracie,

I have another appt today with my gyno. b/c I am having pain to the left of my incision. Its probably nothing. I also told her that I wanted to have the ovaries checked for sarc. and she said that they would check for everything. Is sarc something easy to see? or will they have to "lool" for it? Right now my left knee is so painful, not sure what is going on with that. Can't get into bone doc until Dec. 2nd. But did get something for the pain.

Also, was wondering how Aisha is doing? She was the very first one on here that I had a great relationship with. She is very knowledgable and I am hoping that she is doing well.

LynneTracie wrote:

Hey guys, you all are very quiet--what's up? Time for a group hug, or at least a check in.Send us a note so we know how you're doing--or not doing. I've noticed that we've had quite a few "Newbies" join recently-- how are you all doing? What can we do to help? Remember, questions, what to do next-- we're all here to help. To top it off, we're all on the same journey.Hugs to you all,TracieCo-owner/moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hi Lynne, I always wondered about sarc in the ovaries or down in that region. I have had chronic pelvic pain for 6 yrs now even before being diagnosed with sarcoid. I have had a couple of laparoscopies in which they removed cysts and some scar tissue. The procedure helps the pain for awhile but then the pain comes back eventually.

I would be interested if they find anything with you. Could you please keep me posted?

Thanks a lot. Luv, Debbie

8_2000@...> wrote:

Hey there Tracie,

I have another appt today with my gyno. b/c I am having pain to the left of my incision. Its probably nothing. I also told her that I wanted to have the ovaries checked for sarc. and she said that they would check for everything. Is sarc something easy to see? or will they have to "lool" for it? Right now my left knee is so painful, not sure what is going on with that. Can't get into bone doc until Dec. 2nd. But did get something for the pain.

Also, was wondering how Aisha is doing? She was the very first one on here that I had a great relationship with. She is very knowledgable and I am hoping that she is doing well.

LynneTracie wrote:

Hey guys, you all are very quiet--what's up? Time for a group hug, or at least a check in.Send us a note so we know how you're doing--or not doing. I've noticed that we've had quite a few "Newbies" join recently-- how are you all doing? What can we do to help? Remember, questions, what to do next-- we're all here to help. To top it off, we're all on the same journey.Hugs to you all,TracieCo-owner/moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Welcome on in Marge. Glad that you have found us, but so sorry for the reasons you had to find us. We are all here for you for support, questions, listening, just lurking and reading the posts if that's all you are strong enough to handle at the moment. This disease is very hard to tackle going it alone, so feel free to lean on us whenever you need to. You will find a very warm compassionate group who welcomes you with open arms. Believe me, when I was first diagnosed almost 2 yrs. ago, I was a scared, nervous , complete wreck and this group helped me immensely. Please hang in there and stick around Marge. This illness can be treated. Luv, Debbie

margaret smith wrote:

I suppose that I still might qualify as a newbie since I've had this disease less than six months. Although it feels like two life times of hell. When I can get in a pain-free, energy motivating state, I try to read/respond to posts. For now, I just haven't been able to reach that condition. Battling hospitalizations and doctors appointments have truly put me in a bad funk. Somehow through conversations with other patients and reading encouraging thoughts on this site really have helped my sanity. Yet all of this seems like a nightmare that I wish will go far away. However, I've had no luck waking to my life of well being and good health.

God bless & Good health to all,

MargeTracie wrote:

Hey guys, you all are very quiet--what's up? Time for a group hug, or at least a check in.Send us a note so we know how you're doing--or not doing. I've noticed that we've had quite a few "Newbies" join recently-- how are you all doing? What can we do to help? Remember, questions, what to do next-- we're all here to help. To top it off, we're all on the same journey.Hugs to you all,TracieCo-owner/moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hey ,

Remember I have had the subcutaneous masses like you on my arm? I noticed you said you were starting MTX. Well when I took MTX, my mass went down quite a bit in size. Unfortunately, after being on the MTX for 9 mos. I had blood issues and had to come off the medication. Then the mass started to grow again but nowhere near the the size it was originally was!

Maybe the MTX will help diminish the size of your mass? Is that why they were putting you on it , sorry I know you must have said in previous posts, but I can't remember. I know that you have been having some other serious issues lately. Well, take it easy and congratulations about your son. He sounds like a star! Luv, Debbie

estherbsf@... wrote:

Hi Gang,Sorry to have been so quiet, but for some reason, the mail from estherbsf stopped on November 14, but I'm not sure why. Nothing at my server (comcast, which is my cable company) indicates that the mail was bouncing, but I have yet to go to the Yahoo site to figure out if the problem is from there.ly, I didn't even know there was a problem because I haven't picked up the computer since the fourteenth.As I wrote earlier, I had my visit with Dr. Baughman and was hit by the four bombshells. And then there was my son Hayden's play. I was too ill on the eleventh, but with the assisance of two 15 mg doses of ritalin I was able to make it. Bit as wonderfully exciting it was to see my son sing, dance, and act on the same stage I did (he is going to the same high school that I attendedk, still ranked number one in its theater and music departments in the

state, public and private), I paid, and paid and paid. I slept until two on Saturday, until six o'clock on Sunday and until three o'clock on Monday. On Tuesday I had a twelve-thirty appt. with Dr. , my immunologist. He read over my letter from Baughman, agreeing with everything, but completely staying hands off from the lung and narcolepsy problems. When he asked what Dr. Knox (of the Sarcoid Center) had said about my question, I reiterated that my messages had yet to be answered, nearly a week later, for some very serious matters. Dr. then promised to spear-head the problems for me with the pulmomary people, so I won't have to wait for my next pulmonary appointment. I was told to start taking ritalin or an equivaalent daily for the narcolepsy, but I was worried that its side effect of raising my overall blood pressure into a dangerous zone, and since this new condition Dr. B. thinks i may have means the blood pressure has problems in some parts of my body

already, then would ritalin be a good idea at all??On the humorous side. I did say, also, that the "mass" that has been painful, palpable and at first growing slowly and now gaiining mass at a fairly quick rate is now able to be seen by the naked eye without too much tear enducing poking and proding. The area which can be seen or felt in the middle of my abdomem is about a foot long and at its widest point out from the ribcage about six inches. Dr. agreed that it probably another subcutaneous lesion (for those of you who remember when I had this rare manifestation of sarc all up and down my forearms). He prescribed a thirty mg pred taper to try to see if it would shrink in size. What he forgets is that steroids were the first treatment tried on the lesions before, and as soon as I tapered off the steroids, they just came back even larger. I don't see the topical cream getting through the fat on my stomach, even if it is stretched out, haha.Also started Mtx

yesterdayk, again, so you can see I've been a bit miserable for the past week. Hope everyone in the group is doing well. I'm going to try to catch up, though, for television and sleep are growing very old very fast.Please have a great week and Thanksgiving, but please do not overdoAnd all of you will be in my list of things I am most thankful for.Weller, Weller,Weller,Reneness> > > Hey guys, you all are very quiet--what's up? Time for a group hug, > or at least a check in.> > Send us a note so we know how you're doing--or not doing. I've > noticed that we've had quite a few "Newbies" join recently-- how are > you all doing? What can we do to help? Remember, questions, what to > do next-- we're all here to help. To top it off, we're all on the > same journey.> > Hugs to you all,> Tracie> Co-owner/moderator> > > >

> > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >