May 2010 Message Archive

HOMEDR. DATABASESUPPORT GROUPSMESSAGE FORUM ARCHIVESMISC. LINKSNEWSLETTER ARCHIVESSURVEYSABOUT US/CONTACTDONATIONSSEARCH

   
   

Back to Message Forum Main Menu


SOS-NOW ON FACEBOOK!

May

Name: Eric Gorrell
Email_Address: gorrell_eric@yahoo.com
From: East Liverpool, Ohio
Found_Us_Via: Internet Search
Date: Saturday, May 01, 2010
Time: 01:10 AM
Comments:
Hell Im 22 I was diagnosed with Sarcoid about 6 years ago. I have it in my lings. I was sick for about 2-3 months. I couldnt sleep, eat, barley walk. It was horable. I since have had no symptoms of this disease. i still have alot of scar tissue in my lungs, but nothing else. My lung specialist said he truely believes that my sarcoid is gone and will never return. There is hope for people with this nasty disease. He said that 40-50% of people with it may never have symptoms again. So good luck to everyone And never give up there is always hope. I you have any questions email me.


Name: vickie blackwell
Email_Address: angelofgrace7@yahoo.com
From: Fort Collins, Colorado
Found_Us_Via: Internet Search
Date: Sunday, May 02, 2010
Time: 04:48 AM
Comments:
I have wanted so much to learn more of this disease yet have been struggling every day in dealing with it as new symptoms have been occurring lately and I have to find the best methods of approach to take. This website just this one time visiting; has helped me in so many ways. Vickie


Name: vickie blackwell
Email_Address: angelofgrace7@yahoo.com
From: Fort Collins, Colorado
Found_Us_Via: Internet Search
Date: Sunday, May 02, 2010
Time: 06:38 AM
Comments:
I am so glad that I found this website so we can work on this illness together and try to come up with ways of beating this disease! I was diagnosed with this illness last sept. 2009 and have been through alot. Doctors don't quite fully understand it so feeling like a lab specimen is common and the family cannot relate so this web site will help them understand what I am going through. I believe that we can get to a road of recovery with much self discipline which is what I am in dire need of now and self motivation towards full recovery. I am so medicated and am developing more problems such as diabetes, muscle numbness and pain, sleep apnea which means more meds, tests and minor surgeries. I am sure that once I can stay focused I can become a fully recovered sarcoid patient. I believe it starts with faith, meditation, yoga, healthy eating habits, getting rid of the bad habits, researching holistic medicine with the goal of getting of the steriods, pain meds and many others, eating things high in antioxins, omegas, taking herbs, meditating, visiting a spiritual healer, maybe a psychotherepist, finding something to do that helps make the world a better place and doing our part to helping others, keeping a possitive outlook and making family a priority after self. Right now I hate myself because I have no one to share this with whom understands. I have gained so much weight, sores on body, tired but can't sleep, feeling worthless, can't stay focused, in pain on too many meds in bed alot can't get motivated and hating on others. I have been spending so much money on meds and testing also apts. that I have nothing left to spend on all the things that are good for me. I will get there and find natural methods of healing and share what I have learned and what helps. I am currently having weird shaking fits, tightening of muscles, and have no idea how to deal with diabetes. Every time they cut steriods down I become ill and they can't understand how 5 mg. can make a difference. Thanks for listening, Sincerly, Vickie


Name: Maria Pita
Email_Address: mipita@yahoo.com
From: Caracas, Venezuela
Found_Us_Via: Internet Search
Date: Monday, May 10, 2010
Time: 08:34 PM
Comments:
My sister-in-law has been diagnosed with pulmonary sarcoidosis. We are looking for a specialist in Venezuela or Colombia. If you can recommend one, please e-mail me. Many thanks.


Name: derrick
Email_Address: d.sanders77@hotmail.com
From: alabama
Found_Us_Via: Internet Search
Date: Wednesday, May 12, 2010
Time: 11:08 PM
Comments:
I am a 33year old African American male veteran I was diagnosed with sarcoid in 1999 did the whole prednisone thing everything was fine for a while but overtime I have experienced aches everywhere unexplained bruises and memory loss I went from a athletic football player to not being able to get out of bed my ex wife was diagnosed with fibromyalgia before my diagnosis I was wondering if there was some possible connection between the two has anyone else had a similar story. thx god bless


Name: OnlyGodKnows
Email_Address: lilmissred_20@hotmail.com
From: Oklahoma
Found_Us_Via: Internet Search
Date: Thursday, May 13, 2010
Time: 02:26 PM
Comments:
my husband has sarcoid, it is in his spine, tested by mri. He has gained a lot of weight from using prednisone. He was not able to get out of bed at all for 6 months. Soonercare finally approved to go to hospital. His blood sugar has been really high. He lost a lot of weight a few years ago. Lesions on his eyes in the past. Lesions in stomach. very weak legs, no movement. numbness. Leg stays at a bent angle. Had gotten a very bad bed sore on ankle from its position not wanting to move. Just more insight from another person with sarcoid.


Name: jamie bass
Email_Address: jamiebass@yahoo.com
From: caraway arkansas
Found_Us_Via: Online Support Group
Date: Thursday, May 13, 2010
Time: 03:22 PM
Comments:
i was diagnosed w|sarcoids 2 yrs. ago it was in stage 1. i still have symptoms i worry about weakness and my eyes, i also have nerve damage on right side of my face due to bells paulsey from sarcoids. i feel lonely, like no one else understands the pain and stress i deal w.im a mother of 2. oldest 16 youngest 8.this has affected their quality of life,i try to be strong but i just do not have the strength i use to.my sarcoids comes and goes. im tired allm the time and the ability to work and help my husband is just gone its all i can do to clean the house do chores and keep up with kids.i need a friend who knows what im going through.


Name: Katie Lo
Email_Address: fithgirl@aol.com
From: Texas
Found_Us_Via: Not Really Sure
Date: Thursday, May 13, 2010
Time: 11:25 PM
Comments:
Hello to All, Its been a long time since I have checked in. I have suffered with sarc for about 13yrs now. It seems to be relentless with me. I can hardly walk without giving out of breath. It is so disheartening. I am on a plethora of medicines that seem to help in some ways but there are so many other issues. I have sarcoid in the lungs and on the skin, bags at the corner of my eyes that leak. I guess I am writing because I am sick and tired of being sick and tired.


Name: Florence Magnusen
Email_Address: fmagnusen@gmail.com
From: Tulsa, O K
Found_Us_Via: Internet Search
Date: Monday, May 24, 2010
Time: 10:36 PM
Comments:
I am 60yrs old and I have suffered with sarc since I was 54yrs old. The back pain was beyond description, and I was on oxygen night and day. The last 2yrs I have been in remission (or the pain was more manageable and I am no longer on oxygen) but as of late the pain has gotten worst and I am beginning to get scared. I know my doctor will not increase my vicodin which I am currently taking to control the pain. I read online of a supplement that might help pain due to inflammation (especially of the joints) Well, I discovered further that it contained 6 ingredients in back pain relievers. Has anyone used this product for sarc back pain and did it work for you? Or if you have any advice as to a supplement that might help would you advice as I don't want to take any drugs if possible.


Name: Judith Riley
Email_Address: judyr808@gmail.com
From: OR
Found_Us_Via: Not Really Sure
Date: Friday, May 28, 2010
Time: 02:21 AM
Comments:
I have been reading messages written on this sight for several years now. I have had sarc. for 15 years. Just today I got back the results of some blood work done and found out that my body is low in phorphorus. I looked it up on the internet and found some symptoms I have and some I don't. I was wondering if anyone else has this too. I hate going to the Dr. or have labs done because I don't to know I have something new to add to the list of effects sarc. has on my body.


Name: Jackie S.
Email_Address: jacqueline.staples@rotech.com
From: Louisiana
Found_Us_Via: Physician Referral
Date: Friday, May 28, 2010
Time: 04:46 PM
Comments:
I was diagnosed with sarcoid 10 yrs ago. Primarily in my lungs but has affected my skin, eyes, joints and lymph nodes. dr put me on steroids, that lasted about maybe a month, couldn't take it so I just basically let it run its course. Fatigue, pain, shortness of breath, lesions on my face, belly, back and arms. I had to have cataract surgery a year ago and now the other eye seems blurry. Have pains in my stomach and have been seeing several drs over the years. My lymph nodes are even bigger and putting pressure on my stomach so the dr has talked to me about taking cytoxan and will be monitored on weekly basis. they say sarcoid can go away but my seems to be getting worse. Does anyone out there take Cytoxan? I may start end of June, a little hesitant.



       SOS-NOW ON FACEBOOK!
The information provided on http://www.sarcoidosisonlinesites.com/  is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her physician
Read more about SOS here -- site design by LogoPending.com Site last updated: Tuesday, March 21, 2017 05:38 PM. You may send email to us at: Logopending@gmail.com
Copyright 1997-2017 LogoPending.com All rights reserved, including the right of reproduction in whole or in part, or in any form.

 HOME DR. DATABASE SUPPORT GROUPS MESSAGE FORUM ARCHIVES LINKS NEWSLETTER ARCHIVES  SURVEYS ABOUT US/CONTACT DONATIONS SEARCH