Re: Re: sarcoid in the brain and around the hypothalmus

[Guest guest]

Thank you so much for that info. the only doctor i see right now is a lung doctor. He never once said anything about sending me any to other clinic. My PCM is sending me a eye doc. I'm now having blurred vision. As far as my blood levels they have not been checked at all. I know now I have to be seen by some other doctors and soon I think. As far as my lung doctor he told me my sarcoid was gone, but look at me now. I'm in the 3rd stage not the 2nd full blown and that's why he put me on the 50mg pred. For the past few day's I've been awful to all my family. I have a 9 year old grandson that live's with me and he ask me a couple days ago Nana why are you so mad all the time, and why so you cry for no reason, its hard to try and make him understand. I will be checking into these other med's something need's to change if at all possible. I

worry everyday more and more my family is just going to start hating me. Once again thank you sooo much. Mona

From: annabanana60546 <annabanana60546@ yahoo.com>Subject: Re: sarcoid in the brain and around the hypothalmusTo: Neurosarcoidosis@ yahoogroups. comDate: Monday, April 6, 2009, 2:14 PM

> > > From: mary bauer <marybauerb@ yahoo. com>> Subject: Questions ???> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, March 21, 2009, 9:00 PM> > > > > > > Does an Ant inflammatory Diet make a difference in battling N.S.??> > I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue?> > The sarcoid is located in my brain next to the hypothalamus- Original size was 2 1/2" X 1/2", has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru

T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I am returning April 13th for M..R.I and Lumbar Puncture. Should I be concerned due no change between the 1st and 2nd M.R.I.?? I don't feel any better.> > I feel so lousy and fussy headed, is this due to the Prednisone, higher dose of Lunesta, N.S. or a combination of all three. I go to he Mayo Clinic in Rochester, Mn.. I am so tired of hearing "We aren't sure, we deal with so few of you with this diagnoses" I kinda feel like I am their guinea pig. Where is the best medical facility in the country to offer me the best chance in beating this disease?> > What are my chances in beating this deisease??? There must be stats somewhere.> > Help..I need answers to save my sanity...Thank you, Thank You> >

Desparate > I to went mayo in rochester and saw Dr.Todd Nippholt and he was wonderful. I have developed adrenal insufficiency from the sarcoid attacking the endocrine system. Which includes the hypothalmus you might ask about this because it has caused many problems and a lot of hospitalizations if you read about ai you will read about adrenal crisis which is the reason for the hospitalizations. Has this even come up? too many steroids but like I asked Dr. Nippolt if the steroids were keeping me alive and the answer was yes. To all I just returned from a two week vacation in Florida visiting my daughter and family the Grandchildren are great and the 5year old Raina did not want me to leave. Tearful departure we also took our other and 4 yr old granddaughter Arinna who live in maryland and we sure had a great time. I did overdue it so I came back last

monday and right into the hospital for iv fluids and steroids iv and yesterday the vertigo returned I can't win. I read the posts of others with vertigo and so I am so afraid of falling down. I understand your desperation and sometimes we have to feel that as awful as it is I wish I could take it away from you? If I ever figure out how to do that oh boy miracles and healing maybe someday! When I start to ramble it is time to say goodbye for today! Have to mention 8 month old Grandson Braeden is so beautiful I could cuddle him all day but of course he would rather scoot around. prayers to all your sarc friend Anne

[Guest guest]

The blurred vision can be from high blood sugars caused by the prednisone,. It sounds like your pulmonologist is "old school" and thinks that if you leave it alone-- the sarc, that it will go away on it's own.

New studies show that if you've gone in because of shortness of breath, repeat upper respiratory infections, chronic bronchitis, and you show sarcoidosis-- then it's time to start treatment. The treatment starting point is prednisone.

Since sarc nevers "goes away"- but can become dormant or "in remission"-- then the docs think that -no symptoms, no problem-- and blow off the other signs that may signal it's coming back. Most people start with respiratory infections again, or body and joint pain. So many of us have sarc-induced arthritis-- and unless the pulmonologist understands that sarc is more than a lung issue- he misses this.

Once you've done prednisone, and had a period of remission, then to go back on pred if it comes back is not the best choice. At that point, you'll only mask the problems. By the time they figure out that your "arthritis" or "fibromyalgia" or chronic fatigue is actually systemic sarc issue-- it makes it that much longer before they get you on meds to help.

Plaquenil or Methotrexate should be next in line-- but both take several weeks to build up in your body to start helping.

If those don't do the job, then Imuran or Arava seem to be the next step, and if necessary, then the BRM's. Enbrel, Humira, Remicade, Cellcept- which actually seem to help by blocking only the TNF-B cells-- instead of wiping out your entire immune system. Many of us take a combination of Plaquenil, MTX and a BRM. It can take time, over a period of a year or even two, to really get the right combo figured out-- but it does happen.

Keep the faith,

TRacie

NS Co-owner/moderator

From: annabanana60546 <annabanana60546@ yahoo.com>Subject: Re: sarcoid in the brain and around the hypothalmusTo: Neurosarcoidosis@ yahoogroups. comDate: Monday, April 6, 2009, 2:14 PM

>

> > From: mary bauer <marybauerb@ yahoo. com>> Subject: Questions ???> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, March 21, 2009, 9:00 PM> > > > > > > Does an Ant inflammatory Diet make a difference in battling N.S.??> > I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue?> > The sarcoid is located in my brain next to the hypothalamus- Original size was 2 1/2" X 1/2", has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I

am returning April 13th for M..R.I and Lumbar Puncture. Should I be concerned due no change between the 1st and 2nd M.R.I.?? I don't feel any better.> > I feel so lousy and fussy headed, is this due to the Prednisone, higher dose of Lunesta, N.S. or a combination of all three. I go to he Mayo Clinic in Rochester, Mn.. I am so tired of hearing "We aren't sure, we deal with so few of you with this diagnoses" I kinda feel like I am their guinea pig. Where is the best medical facility in the country to offer me the best chance in beating this disease?> > What are my chances in beating this deisease??? There must be stats somewhere.> > Help..I need answers to save my sanity...Thank you, Thank You> > Desparate > I to went mayo in

rochester and saw Dr.Todd Nippholt and he was wonderful. I have developed adrenal insufficiency from the sarcoid attacking the endocrine system. Which includes the hypothalmus you might ask about this because it has caused many problems and a lot of hospitalizations if you read about ai you will read about adrenal crisis which is the reason for the hospitalizations. Has this even come up? too many steroids but like I asked Dr. Nippolt if the steroids were keeping me alive and the answer was yes. To all I just returned from a two week vacation in Florida visiting my daughter and family the Grandchildren are great and the 5year old Raina did not want me to leave. Tearful departure we also took our other and 4 yr old granddaughter Arinna who live in maryland and we sure had a great time. I did overdue it so I came back last monday and right into the hospital for iv fluids and steroids iv and yesterday the vertigo returned I can't win. I read the posts

of others with vertigo and so I am so afraid of falling down. I understand your desperation and sometimes we have to feel that as awful as it is I wish I could take it away from you? If I ever figure out how to do that oh boy miracles and healing maybe someday! When I start to ramble it is time to say goodbye for today! Have to mention 8 month old Grandson Braeden is so beautiful I could cuddle him all day but of course he would rather scoot around. prayers to all your sarc friend Anne