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Sjogrens Topics => Living With Sjogren's => Topic started by: vrystaat on October 13, 2019, 01:06:09 PM

Title: Polymyositis and Sjögren's Syndrome
Post by: vrystaat on October 13, 2019, 01:06:09 PM
I am writing this to our community.
I have had Sjögren's Syndrome since 1992, and it slowly became worse. One day they tested my Creatinine kinase and it was more than 2000 (i.e. over 80% of normal).
In 2002, I started feeling pain in my legs, which grew worse and worse. I also then started having typical Sjögren's Syndrome signs and symptoms.
In all this time my Rheumatologists were from a high-end academic center in California, so called the tenth best center for Rheumatology in the country.

I started reading many academic journals and became quite an expert. I attended Rheumatology conferences as often as I could.
Finally, last week I woke up paralised in my legs, with new weakness in my arms, difficulty in swallowing and weakening of my paraspinal muscles.
Needless to say, I was frantic. To state the obvious my medical care had been substandard. I pleaded many times for IVIG, as by now I knew that I had Polymyosits. It was always refused, even by the Chairman of the Department.

My reason for these comments is that despite the so--called best care for Sjögren's Syndrome and Myosits, I received very poor treatment. The lesson I have learned that Specialists frequently miss the boat entirely. Always get a second opinion. Always ask for IVIG, and don't take no for an answer. If you can handle Cellcept treatment, go for it. Be as aggressive as possible. Pay attention to your laboratory results, and educate yourself. And always seek the best possible physicians. I now have to travel right across the country each time I need care. I need it.

Recently, I visited a famous Rheumatologist who was shocked by my experiences of substandard care. He insisted that I file lawsuits, but I declined. I am not that type of person.

I hope that this helps some people.

Title: Re: Polymyositis and Sjögren's Syndrome
Post by: irish on October 13, 2019, 02:51:38 PM
I get it....I am so sorry that you were virtually ignored over you health care. Doctors often don't want to hear us voice opinions regarding our diagnoses because they think we are hypochondriacs. They have not learned that many people with chronic illness know a lot more about our body than the doctors think they do. We have the advantage of living in our sick vessel and know what our aches, pains and other weird symptoms are.

They choose to ignore our opinions and don't realize that we have been searching for years in a more in depth way then they have. Doctors have pooh oohed me also and ask what the specific problem is. I tell them I don't know.....I have so many issues that are attacking my body that I have lost the ability to know where to start. I tell them "help". They see us walking, talking, eating, laughing and looking like everyone else. They have not learned that we are good actors and have to pursue and exist in spite of out disease. We have families and have to try to keep living a life.

I have had the same thing happen to me a few times on a lesser level. Blood work indicating Myasthenia gravis plus symptoms and told by this famous clinic that these symptoms came with my prematurely grey hair. Many of these doctors have egos that are huge and will want to maintain these egos at  our expense. They need to be right. We don't need to be right we need to find an answer.

This is why I tell people to keep on banging on doors and seeing new doctors because eventually you will find a good doc who will listen. The sad thing is these years of banging on doors are expensive and wear us down to the bone. At one point my hubby had told me that I should just accept what was going on cause they would never find the diagnosis. I  told him I was going to keep on with the fight because I was sick and I wanted to know what I was going to die from. He stuck with me and we found the doctor who listened and found the answer.

All I can say is that much of my adult life has been hard and prevented me from doing a lot of things I wanted to. Those of us like this have to develop a thick skin and endurance that doesn't quit to get through what we have on our platter. Thanks for writing your post cause people need to be encouraged to keep up the fight. I think that the majority of autoimmune patients and others have had a lot of these same experiences and need to hear from others for support. Take are and hope you feel better. irish
Title: Re: Polymyositis and Sjögren's Syndrome
Post by: lorigacc on October 24, 2019, 06:54:22 AM
Thanks Irish.  We are all so frustrated with the medical community and they way they choose to ignore us.  I wish I could have that "thick skin" you speak of, instead I just get more angry and I know that only makes things worse.  Thanks for your wise words and the reminder that we are not alone.  Take care :)
Title: Re: Polymyositis and Sjögren's Syndrome
Post by: irish on October 24, 2019, 09:17:55 PM
I didn't have the thick skin when I started out as an adult but I seem to have developed one over the years. We seem to get wiser and everything else as we get older. So much of the time we could have used the thick skin earlier in life. Irish
Title: Re: Polymyositis and Sjögren's Syndrome
Post by: susanep on October 29, 2019, 12:00:37 AM
All of this is so true. We all learn to become fighters. Trying to find more answers for what is going on within these bodies.  I can relate in how hard it gets  when I feel so tired, but I want to be here for my family and friends.  :)


Title: Re: Polymyositis and Sjögren's Syndrome
Post by: SjoGirl on November 02, 2019, 04:21:17 PM
This is so disheartening but all too similar to the issues that so many women experience. Interestingly it's not just male doctors who don't listen, some women don't either.

We must become educated and must be our own advocates. My niece just had gallbladder surgery for an organ that was horribly diseased. She had to fight her doctor who kept saying it was pancreatitis and could not be her gallbladder because she was not in pain. Craziness!!
Title: Re: Polymyositis and Sjögren's Syndrome
Post by: irish on November 02, 2019, 04:59:09 PM
You know, I have been thinking about the attitude that many doctors have with those of us with autoimmune. It has occurred to me that these docs are making our treatment too hard. If they would make time to call other specialists and use their experience and info to help treat us. In fact, all they have to do is pick up the phone and call someone and make a referral.

 They also seem to miss the fact that those of us who doctor for years with the same recurring symptoms that are so darned weird...gosh darn, if they can't find a name for what we have then mayee it could be autoimmune. It is not their job to beat us down and tell us it is in our head. Send us to a specialist and he can tell us if it is in our head if he thinks so. An internist or an immunologist would be a good place to start. Good luck. Irish