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Old 12-18-2011, 01:01 AM   #1
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sjogrens syndrome/very frightened.

Hi Everyone:
Well, I am not doing to well. I recently had a diagnosis of Sjogrens after years of not knowing these strange symptoms affecting all parts of my body. Doctors suspected Lupus for years but no positive ANA tests or anti DNA or RF. 2 weeks ago my wonderful Rheum. finally had a positive hit on Sjogrens. He suspected this disease all along but could not give me a definitive diagnosis because the blood work would not show anything. But he hung in there knowing there was something wrong and prescribed Medrol. Big improvement but not with the "Run over by a monster truck fatigue." Unrelenting, horrible fatigue. As though I was dead and they just refused to bury me. I had a strange malady strike when I was 30 yrs old back in 1988. It lasted for 2 years but got through it with the help of another steroid which I was able to take on my own due to my mother having to take it to sustain her life. Could not breathe, severe fatigue so bad I would fall. They said I had emphysema at 30 but thereafter it disappeared? LOL. oh, medicine in the 1980's. What a joke.
I always had in the back of my mind that this thing would come back. It was devastating and my company gave me a whole 2 weeks off to find a diagnosis. Well, it is now 2011. I saw every doctor that I needed to that this disease affected. From GI docs to hematologists. I am beginning to believe that there are about 3 intelligent, dedicated doctors in the USA. Finally, a diagnosis after 23 years? Really? I had so many classic symptoms. I could diagnose diseases after 23 years of trying to find an answer to this mess. I believe this is a secondary diagnosis of Sjogrens due to what happened to me at age 30. Unfortunately I moved from Philadelphia to NE Pennsylvania.

Finally, my question......Is there anyone here with Sjogrens and Lupus who could share their story. I am frightened. I am a single mother, 15 yo daughter, was exceptionally successful in my career of 27 years even though I missed two weeks trying to find that all elusive diagnosis. Scare of leaving my daughter alone there are 3 people still alive in my family and I don't want to leave my daughter by herself. God, she needs me.

Last edited by Administrator; 01-10-2012 at 11:21 PM.

 
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Old 12-19-2011, 11:07 AM   #2
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Re: sjogrens syndrome/very frightened.

Welcome to the rare disease club. There are certainly treatments for Sjogren's now, even if there is no cure. I have secondary Sjogren's to CREST, a form of scleroderma, and understand your fear. But these diseases can be managed so much better than in the past. LOL, on another place on the internet there is a lady who is 80 years young with scleroderma! I think we all go through that fear stage in the beginning, but as you go forward with your treatments it gets easier to handle. I might also mention that most of the time, when you do research on these rare conditions, you only get the worst case scenarios, to make everything even scarier. AI diseases are notoriously difficult to diagnose, and getting a name to your particular disease, if you've not got positive blood work to point to any one direction can take years, and doesn't seem to be that uncommon. I'm just a patient, but there are many treatment options besides steroids nowadays. I guess that's why they call it medical "arts". I guess I wanna say, cheer up and enjoy your daughter and the holidays! AI diseases such as Sjogren's are not automatically death or even disability sentences any more! Take care and let us know how you're doing!

 
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Old 12-20-2011, 01:38 AM   #3
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Re: sjogrens syndrome/very frightened.

Quote:
Originally Posted by gdiluca View Post
Welcome to the rare disease club. There are certainly treatments for Sjogren's now, even if there is no cure. I have secondary Sjogren's to CREST, a form of scleroderma, and understand your fear. But these diseases can be managed so much better than in the past. LOL, on another place on the internet there is a lady who is 80 years young with scleroderma! I think we all go through that fear stage in the beginning, but as you go forward with your treatments it gets easier to handle. I might also mention that most of the time, when you do research on these rare conditions, you only get the worst case scenarios, to make everything even scarier. AI diseases are notoriously difficult to diagnose, and getting a name to your particular disease, if you've not got positive blood work to point to any one direction can take years, and doesn't seem to be that uncommon. I'm just a patient, but there are many treatment options besides steroids nowadays. I guess that's why they call it medical "arts". I guess I wanna say, cheer up and enjoy your daughter and the holidays! AI diseases such as Sjogren's are not automatically death or even disability sentences any more! Take care and let us know how you're doing!
Thank you so much for your reply. You made me smile and have given me much hope. I thank you for your knowledge and encouragement. It seems since I moved from Philadelphia that I am in an area with such limited medical knowledge. I returned back to Philadelphia to see my rheum again and low and behold I finally got a diagnosis. It is just that the Plaquenil did not seem to touch my symptoms and tapering from the Medrol brought back so much pain again in the spinal area and knees along with that horrible fatigue. But my nose is running again after years and you know that horrific brain fog seems to be lifting a bit. I know this drug takes months to see improvement. I am just so tired of dragging my body around I suppose that I want a quick fix. Unfortunately, I cant take methotrexate another allergic reaction to that. But none to Plaq. just some slight itching. But no bid deal. Thank you again and have a great holiday too. I will be adding people that I dont even know to my thoughts and prayers. You have given me hope and you know, what else can I ask for now. Take care of you.
Dolores (Gia Maries' Mom)

 
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Old 01-02-2012, 07:01 AM   #4
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Re: sjogrens syndrome/very frightened.

Hi-I'm in Philly and looking for a Rheum. Can you share your doctors name? Thanks!!

 
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Old 01-05-2012, 12:58 AM   #5
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Re: sjogrens syndrome/very frightened.

Sorry, It took so long to get back to you. Are you in luck! I miss Philly best darn place on earth. Lived there for a total of 51 years. Oh, my roots. Wish I was there. Anyway, I had, yes had, the best Rheumatologist in the country. I had to move due to not being able to afford the city being on disability. Yuck. It is a well kept secret that he is the best in the country. I hope it stays that way. It is 3:30 am can't sleep for pain tonight. Thought I would peruse my emails. His name is Dr. Mohan Gurubhagavatula, D.O. he is called Dr. Mohan. His practice is called the Arthritis CenterAll I can say is he is the best of the best. He worked with me for four years. Or should I say he put up with me for four years. He diagnosed a neurological problem (not his field but he did it anyway.) He stuck with me throughout my myriad of health issues until, until, he got to the bottom of it.

If I had not seen him in Lansdale when I was living there I would probably have been in a wheel chair. He surrounds himself with the top of the top doctors if you need to be referred. I had been sick for a long, long, time. I did not go into great detail with him on that fact as I was to a point where I did not know where to begin. So many weird symptoms that I felt he would have thought I was a hypochondriac and that was my biggest mistake. I held back and I did not write things down due to my exhaustion; another mistake. Also, I had brain fog and would forget so many important issues in hind site. He tested me for Sjogrens about 6 times and always negative. Last time about a month ago he tested me for everything under the sun and there it was, finally a diagnosis.

Last edited by Administrator; 01-10-2012 at 11:19 PM. Reason: too much info

 
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Old 01-10-2012, 01:02 PM   #6
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Thumbs up Re: sjogrens syndrome/very frightened.

Hi,

I don't know if this information will help you or not but there is a doctor in this area who is supposed to be one of the top doctors in the country on Sjogren's syndrome. She is professor with Baylor College of Denistry in Dallas, TX and is also presently involved with research on Sjogren's. Her name is Dr. Ibtisam Al-Hashimi

I have Sjorgren's Syndrome but mine is secondary to rheumatioid arthritis and so mine is being followed by my rheumatologist. However, my daughter has Sjorgrens and hers is primary and is being followed by Dr. Al-Hashimi. She has really helped my daughter, whose disease had spread to her lungs. Among the changes my daughter had to make was to eliminate cinnamon and all mints from her diet. Sjogren's can be devastating as it affects many parts of the body, but we have also found out that it can be controlled. Don't be frightened. Just continue getting educated on it. You can win this battle.






Quote:
Originally Posted by giamarie12 View Post
Hi Everyone:
Well, I am not doing to well. I recently had a diagnosis of Sjogrens after years of not knowing these strange symptoms affecting all parts of my body. Doctors suspected Lupus for years but no positive ANA tests or anti DNA or RF. 2 weeks ago my wonderful Rheum. finally had a positive hit on Sjogrens. He suspected this disease all along but could not give me a definitive diagnosis because the blood work would not show anything. But he hung in there knowing there was something wrong and prescribed Medrol. Big improvement but not with the "Run over by a monster truck fatigue." Unrelenting, horrible fatigue. As though I was dead and they just refused to bury me. I had a strange malady strike when I was 30 yrs old back in 1988. It lasted for 2 years but got through it with the help of another steroid which I was able to take on my own due to my mother having to take it to sustain her life. Could not breathe, severe fatigue so bad I would fall. They said I had emphysema at 30 but thereafter it disappeared? LOL. oh, medicine in the 1980's. What a joke.
I always had in the back of my mind that this thing would come back. It was devastating and my company gave me a whole 2 weeks off to find a diagnosis. Well, it is now 2011. I saw every doctor that I needed to that this disease affected. From GI docs to hematologists. I am beginning to believe that there are about 3 intelligent, dedicated doctors in the USA. Finally, a diagnosis after 23 years? Really? Is this American Medicine? I had so many classic symptoms. I could diagnose diseases after 23 years of trying to find an answer to this mess. I believe this is a secondary diagnosis of Sjogrens due to what happened to me at age 30. Unfortunately I moved from Philadelphia to NE Pennsylvania. Believe me, things are different in these out of the way places. I thought Philadelphia was horrible for finding out answers now I can't even see a dr here w/o a referral on Medicare. Unheard of in Philadelphia. They are so controlling here it is frightening. Like, a controlled state. Scary! Finally, my question......Is there anyone here with Sjogrens and Lupus who could share their story. I am frightened. I am a single mother, 15 yo daughter, was exceptionally successful in my career of 27 years even though I missed two weeks trying to find that all elusive diagnosis. Scare of leaving my daughter alone there are 3 people still alive in my family and I don't want to leave my daughter by herself. God, she needs me.
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Last edited by Administrator; 01-10-2012 at 11:16 PM.

 
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