Re: old member returning (it's with a question)

[Guest guest]

Hey gang......it's me... in Illinois! Long time no talk to several of you. I apologize for that....just had to take some time off. I have always read all of your emails though to keep up with everyone and you all are and have been in my thoughts and prayers daily. I have one question for you all and anyone that is experiencing it or has experienced it....could you please give me some helpful advice? I am having a bone density test done tomorrow morning because I hurt everywhere. I went to doc last week and told him that "my bones hurt". I thought that he was going to think that I was crazy, but instead he did an exam and asked me alot of questions and pushed around. After several screams by me....he said that he thinks that my bones are thinning. I hurt so bad. I can't lay on my side and night and put my legs together because I can't stand the pain of my knee caps touching each other. If anyone bumps into me....I just about jump out of my skin. Also, my breasts hurt beyond hurt and have for months. They are lumpy and have been checked my doc. No cancer there! He said that it was all systemic and neurologic. He said that my body is hypersensitive to everything!!!!!! I agree!!!!! Does anybody else feel like this daily or have these problems? I still have all the other.....muscle weakness, problems with posture, jerking muscles, facial spasms and pain, short term memory problems, night sweats, and major fatigue. The list goes on, but I don't need to tell you all.....I know that you all experience the same. I look forward to hearing from any insight that you all might have. Thank you! God Bless All of YOU!!!!!!!!!!!!!

Grove > >Reply-To: Neurosarcoidosis >To: <Neurosarcoidosis > >Subject: RE: old member returning >Date: Tue, 14 Dec 2004 10:19:39 -0800 > >Darlene, >That is great news, I'm glad you found something that works for you. >Depression is the last thing we should have to deal with; there are so >many great anti-depressants out there. I have been on Effexor for a >long time now, and wonder if it's not time to change? >Anyway I am so glad to hear it helps!! >God Bless, >Marla > > Re: old member returning > >Hi and welcome back! > After reading your message, I thought I had been reading from >my journal! >I have basically gone through the same thing and after having several >tests, I >told my family doctor that I HAD to have some help! I have known him >since he >was a child and he knew that I was very serious. After telling him >what all I had >been through with the specialists and tests, he suggested I try taking >Zoloft for >awhile to see if it would help and it DOES! Now, as we have noted >before, all >medicines do not work the same on everyone! But this has helped my >sweats >a lot! Ask your Doctor to try it and see if it helps you or if you are >a candidate >to try it. I had a little nausea at first and it took about a week for >it to really >help but I have been on it since November now and it is really helping. >Good luck and again, welcome back. Sorry you have this Sarc Monster >but >glad you are here. > >Darlene >Co-Owner/Moderator > > > > > old member returning > > >I am 39 year old mother of three. I was diagnosed with >sarcoidosis/neurosarcoidosis four years ago. I went through two >years on Prednisone which resulted in high blood pressure. I went >into remission for a while and thought that I was over the hump. >Now, unfortunately, I have had some strange symptoms. Some I >believe are directly related to the sarcoidosis and others have the >doctors stumped. I just wanted to see if anyone has experienced >anything like this and what they have been advised. I get these >awful sweats every 30-40 minutes. At first they thought it could be >hormonal, but everything turned out ok. The next step was to check >the thyroid and that seemed to be fine. Finally the cardiologist >said that it could be a tumor on the adrenal gland. I did a 24 hour >urine test and it was negative. I am just frustated and could use >some guidance. I see my doctor at s Hopkins on January 7th but >I have no idea what to do for these imbarassing eppisodes and need >help. > > > > > >~~~~ *** ~~~ *** ~~~ *** ~~~~ >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 > >

[Guest guest]

Hey ,

Long time no see. I had a bone density test once too, it was nothing, and mine were fine. But there were times that if someone bumped into me, I would also jump out of my skin. It is neuropathy. Very painful, and was d'x but mr neuro. Got another appt with him soon. I am home with pneumonia again, and a few weeks ago had both ovaries removed and a few weeks before that, I was in hospital again for pneumonia. So its been fun. Hope that you Troy and the kids are doing well. If Troy is gonna be here in town for bb games, give Bill a call and he will come over and watch.

Lots of Love

Lynne Grove wrote:

Hey gang......it's me... in Illinois! Long time no talk to several of you. I apologize for that....just had to take some time off. I have always read all of your emails though to keep up with everyone and you all are and have been in my thoughts and prayers daily. I have one question for you all and anyone that is experiencing it or has experienced it....could you please give me some helpful advice? I am having a bone density test done tomorrow morning because I hurt everywhere. I went to doc last week and told him that "my bones hurt". I thought that he was going to think that I was crazy, but instead he did an exam and asked me alot of questions and pushed around. After several screams by me....he said that he thinks that my bones are thinning. I hurt so bad. I can't lay on my side and night and put my legs together because I can't stand the pain of my knee caps touching each other. If anyone bumps into

me....I just about jump out of my skin. Also, my breasts hurt beyond hurt and have for months. They are lumpy and have been checked my doc. No cancer there! He said that it was all systemic and neurologic. He said that my body is hypersensitive to everything!!!!!! I agree!!!!! Does anybody else feel like this daily or have these problems? I still have all the other.....muscle weakness, problems with posture, jerking muscles, facial spasms and pain, short term memory problems, night sweats, and major fatigue. The list goes on, but I don't need to tell you all.....I know that you all experience the same. I look forward to hearing from any insight that you all might have. Thank you! God Bless All of YOU!!!!!!!!!!!!!

Grove > >Reply-To: Neurosarcoidosis >To: <Neurosarcoidosis > >Subject: RE: old member returning >Date: Tue, 14 Dec 2004 10:19:39 -0800 > >Darlene, >That is great news, I'm glad you found something that works for you. >Depression is the last thing we should have to deal with; there are so >many great anti-depressants out there. I have been on Effexor for a >long time now, and wonder if it's not time to change? >Anyway I am so glad to hear it helps!! >God Bless, >Marla > > Re:

old member returning > >Hi and welcome back! > After reading your message, I thought I had been reading from >my journal! >I have basically gone through the same thing and after having several >tests, I >told my family doctor that I HAD to have some help! I have known him >since he >was a child and he knew that I was very serious. After telling him >what all I had >been through with the specialists and tests, he suggested I try taking >Zoloft for >awhile to see if it would help and it DOES! Now, as we have noted >before, all >medicines do not work the same on everyone! But this has helped my >sweats >a lot! Ask your Doctor to try it and see if it helps you or if you are >a candidate >to try it. I had a little nausea at first and it took about a week for >it to really >help but I have been on it since November now and it is really helping. >Good luck and again, welcome back. Sorry you have this Sarc

Monster >but >glad you are here. > >Darlene >Co-Owner/Moderator > > > > > old member returning > > >I am 39 year old mother of three. I was diagnosed with >sarcoidosis/neurosarcoidosis four years ago. I went through two >years on Prednisone which resulted in high blood pressure. I went >into remission for a while and thought that I was over the hump. >Now, unfortunately, I have had some strange symptoms. Some I >believe are directly related to the sarcoidosis and others have the >doctors stumped. I just wanted to see if anyone has experienced >anything like this and what they have been advised. I get these >awful sweats every 30-40 minutes. At first they thought it could be >hormonal, but everything turned out ok. The

next step was to check >the thyroid and that seemed to be fine. Finally the cardiologist >said that it could be a tumor on the adrenal gland. I did a 24 hour >urine test and it was negative. I am just frustated and could use >some guidance. I see my doctor at s Hopkins on January 7th but >I have no idea what to do for these imbarassing eppisodes and need >help. > > > > > >~~~~ *** ~~~ *** ~~~ *** ~~~~ >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 > >

[Guest guest]

Thanks Rose for replying back. As doctors have explained to me....it's all because of neurosarc and how hypersensitive we are to things! I know that I can NO longer handle real cold or real hot weather. I hurt REALLY bad then. Well, hope all else is going ok with you. I wish you the best and enjoy the holidays!!!!!

Grove > >Reply-To: Neurosarcoidosis >To: <Neurosarcoidosis > >Subject: Re: old member returning (it's with a question) >Date: Thu, 16 Dec 2004 04:26:59 -0500 > >Hi, ! I don't know if I'm getting just the beginning of this bone pain. I've noticed that I can't cross my legs at the ankles or shins if my legs are bare; it's not real painful, but tender enough to make me change position. Now if I have sox or pants on, it's ok. Also the top of my feet are tender to the touch, but don't hurt otherwise. My bone density is good, even though it dropped about 15%, because it was much higher than normal to start with. Anyone else have this kind of subtle symptom, then more severe pain later? Rose > > old member returning > > >I am 39 year old mother of three. I was diagnosed with >sarcoidosis/neurosarcoidosis four years ago. I went through two >years on Prednisone which resulted in high blood pressure. I went >into remission for a while and thought that I was over the hump. >Now, unfortunately, I have had some strange symptoms. Some I >believe are directly related to the sarcoidosis and others have the >doctors stumped. I just wanted to see if anyone has experienced >anything like this and what they have been advised. I get these >awful sweats every 30-40 minutes. At first they thought it could be >hormonal, but everything turned out ok. The next step was to check >the thyroid and that seemed to be fine. Finally the cardiologist >said that it could be a tumor on the adrenal gland. I did a 24 hour >urine test and it was negative. I am just frustated and could use >some guidance. I see my doctor at s Hopkins on January 7th but >I have no idea what to do for these imbarassing eppisodes and need >help. > > > > > >~~~~ *** ~~~ *** ~~~ *** ~~~~ >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 > >