Is it Lupus or what?

Go to the top posting, lupus resources and you will find a link to possible symptoms which you can compare to your own.  Lupus is the disease with a 1000 faces and can be difficult to get a clinical diagnosis.

You mentioned falling.  Do you have any significant muscle weakness?  Difficulty getting up and down from chairs, toilets, climbing stairs, raising your hands overhead, or swallowing? 

Make sure you write down all your symptoms, no matter how insignificant they seem to you.  Also write out your questions for the doctor.  All of this can be quite intimidating and you can easily overlook something that could be important.  I keep a health log in a spreadsheet with all sorts of pertinent information.  No way I could ever remember it all.

Bill

Hi Sheryl:

First off welcome to our forum. I'm glad to see that Bill responded to your question. He has provided you with a lot of good advice.

I saw your post, just before I was getting ready to log off. I wanted to pass on a word of encouragement to you. First I'm sorry you're having such a hard time with pain. It's the pits and it's horrible to deal with. I hope that your doctors can come up with a treatment plan for you.

I know that you're sad and hopeless right now, but try to remain positive here. Like Bill said, Lupus has 1000 faces and can be difficult to DX. Look over the criteria that you have to have to get a DX of lupus. Just because you've got a positive ANA, it DOES NOT, mean you've got lupus. People who are totally healthy can have a positive ANA because of other various issues. My daughter is 14 1/2 yrs old and has a positive ANA of 1:640. She's had this lab positive since she was 5 yrs old, she doesn't have lupus at all. I worry about her, but the Peds Rheumy assured me that every year that passes and she doesn't develop other symptoms is a good thing.

So try to focus on your spread sheet, read up on lupus, so you'll know what questions to ask. Know that we're here for you and please let us know if we can help in anyway.

Again welcome and I hope you feel better really soon.

Take care,
Barbara

petuniablue said...
Thanks Bill for responding...You asked about significant muscle weakness yes I do...the advice of keeping a log is an excellent idea.... There are so many things to remember and not sure how long before I actually get an appt with rheumotologist..Right now I am feeling pretty sad and hopeless and would love any input anyone has I am a new member...

God Bless you all,

Sheryl

Sheryl,

Would you answer yes to any of the specific questions about muscle weakness?  If so, there is a possiblity that you have a myositis disease.  Lupus can also cause muscle weakness but myositis (that is a category for several types of inflammatory muscle diseases) has some telltale symptoms.  You can also have an overlapping connective tissue disease which includes lupus.  I have mixed connective tissue disease which is lupus, scleroderma and polymyositis. 

I know you must be worried but diagnosing what you have can be challenging so finding an experienced doctor is important.  Get a second opinion if you are not satisfied or unsure.  Most of us have done that.

Early diagnosis and aggressive treatment are important and make controlling whatever you have, if it is an auto immune disease, less of a challenge. 

It is easy to say but you should gather all the information you have on your symptoms and medical history.  My disease is very rare but it was diagnosed within a few months of the first flare.  It was also an extreme case....off the charts but I have recovered remarkably and live a fairly normal but less active life.  Most AI diseases are treatable and many can live a normal life.  I am a good example of how bad you can get and how you can still recover and return to function and even some fun.

Every case of auto immune disease is different in their manifestation and severity.  That is why diagnosis and treatment is sometimes so difficult.  Coming to a forum like this is a good first step.  Someone has probably experienced what you are and can help.

If you do have a myositis disease there are a couple of other forums that are excellent.  Depending on where you live there are often local lupus support groups.  I am going to a meeting tomorrow night.  Many of the attendees will have lupus and even other AI diseases.  Check out the www.lupus.org site for locations.  The Myositis Assn also have local support groups but not as many as these diseases are much rarer.  The forum is very active and good.

Sorry you are having problems and hope you can get a diagnosis and treatment soon.  Get an appointment with a rheumy as soon as you can.

 

Bill

Bill,

Thank You so much for all the information....I will do some research and I will be prepared for the Dr when I get my appt...Thank you so much for sharing your story it helps to know people are finding ways to live useful lives and that maybe my severe pain will not last forever....

bye for now,

Sheryl

Thank you Des for responding to my post I have gained a wealth of info in just 1 day thank you to all of you for helping to ease my hopelessness...I know I have a long road ahead of me but am beginning to build some tools to help me get by....

I am still overwhelmed but trying to take it one day at a time.....My husband is a recovering alcoholic and the stress of the last few years especially the last few months it has been difficult I am trying to incorporate what I have learned in al-a-non to my health as well...as I am looking back over the past few years I see so many unexplained symptoms add them together and they make so much sense....my short term memory is effected as well.It is so hard to see the changes in my life.I do not seem to be the person I used to be living with chronic pain is a tremendous burden.

Again thanks to all of you. I really need your support in my journey.

God Bless,

Sheryl

Thank you Pat for your kind words I can already tell there are some wonderful people on this forum thank you for welcoming me into the fold...Good night to all my pain meds are making me drowsy so off to sleep I go

God bless you all,

Sheryl