But my mother might...
My mother has been dealing with pain in literally all her joints. She is 56 years old and does not believe in seeing doctors. She has continued to cope with the pain while carrying on household chores for about three years. All her finger joints have swollen then subsided leaving her fingers slightly disfigured from their original position. She has difficulty standing at times. The swellings occur in her hands, feet, and recently even in her collar bone she says. The swelling is painful and eventually subsides leaving the joint seemingly disfigured.
A week ago after a lot of convincing she went to a doctor and had blood work done. The results scared me! The RA factor (I believe that is what it's called) was noted to be in a range up to 25. Well her result said her RA factor was over 3000! But the doctor said everything looked fine in her hand xray. Please share some experinces with me. I want to help my mother and knowledge will help me make sure she is well taken care of. She is scheduled to see a Rheumatologist this week. Is there anything I should probe the doctor for to gauge their competence. Is anyone in the Queens, NY area and can recommend a competent Rheumatologist?
I appreciate any help
Thanks
One thing that I would definatly do is bring the films from the xray with you if possible and request an MRI of her hands. A good Rheumatologist will get her started on probably prednisone and a disease modifing agent such as Methotrexate (MTX on the boards). I have suggested this book to many, it is called Arthritis for Dummies and it is an excellent beginner book. It is formatted for easy reading and quick references. It explains the disease process of RA, as well as other forms of arthritis. It discusses common symptoms, treatments....and what to look for and expect from a Rhuematologist. It is wonderful...runs about 13.00 through Barnes and Noble, and is a great guide.
One thing to be sure and read...and I think this in the inside cover, is how to avoid scams. There are lots of books and websites trying to sell magical cures. Be careful....there is no cure for RA!
You will get lots of help and support here...and hopefully your mom is able to get some treatment and relief. You are great for sticking by her in this. It is hard to deal with alone.
Welcome!
The place that took the films probably has them. Call them up and tell them that you need to pick them up. You probably want to do this at least a day before your doctor's appointment. Don't ask them to send the films to the doctor as there are foul ups. I think your hardest struggle is getting your mom to accept treatment. If you can get her on here, it might help. We have lots of people from very young to well, we won't go there. But your mom would fit right in and it would probably help her adjust to the illness. Deciding on a good Rheumatologist is difficult. How they are going to treat is the biggest consideration. You gauge their knowledge by learning about the disease yourself. Pick up the book that Crunchy suggested. Also, you can go to www.arthritis.org for some good basics. www.Webmd.com, Mayo Clinic and John Hopkins are all good sites. Your mom already has something that a lot of people don't start off with, someone who recognizes and wants to help her get better. That is worth everything. Come back with questions after you see the doc. HI - my Mom has RA too. For about 20 years; and now I have it. It does have genetic links. Please remember that for yourself. My Mother doesn't like doctors either. She was diagnosed and getting treatment and then moved and didn't like the doctor in the new city and, quit going. She's really bad off now. Please, the most important thing is: there's no going back. Once there's damage it's permanently there. You can only slow down or stop the progression of this disease. Once there's erosion of the joints, it's there for good. Get help as early as possible and get aggressive help. In the form of DMARDS and/or biologic drugs. Deanna's right - read about RA. Just search rheumatoid arthritis and may websites come up. Definately, take her advice about www.arthritis.org and click on "communities" to get to your local chapter. Most local chapters have seminars every now and then and they could possibly help you with a doctor AND send you information too. Take advantage of it ALL. Knowledge is power with this disease. I would suggest that she does participate in a online (like this one) or an in-person support group (find one through your local arthritis foundation or your rheumatologist). Because there are SO many things that her doctor can't help with or describe and others with the disease can. Her RA factor is definately high. But, that is only one of many things that are considered when making a diagnosis. There are other blood tests too: anti-ccp, sed rate and blood counts. Plus there's the clinical exam of the joints, symptoms etc.... There is no one test that says yes, this is RA. It's a puzzle that needs to be put together. It could be some other type of arthritis also. Seeing a rheumatologist is the correct step no matter what type it is. I hope we all have helped you. All the best to you and your Mom. Please keep in touch. Well I am glad to see ya ordered the book..it really is good...and sorry to see the visit wasnt as productive as you had hoped. As far as which meds are better... there are quite a few newer ones out there and some tried and true ones...but for the most part it is like this...there is a total of about 12 or so drugs on the market for RA outside of the NSAIDs and they are all pretty decent..but there is no way to tell what is gonna work for who...and even if anything will. There are a few who see results with the first thing they try. There are a few who go through a process of elimination to get to the one that works. There are some who have been through all of them with no results....and there are those that are like me...still working my way through the list trying to find something that will work. There are different levels of how the drugs work too. Some people will slow or even stop progression on the disease and still feel pain, and vice versa. So, as so can see, there is no definitive end all be all magical answer to this thing. And that is why this disease is so very hard for most of its sufferers. Because it is a waiting game...full of questions left unanswered...and alot of wait and see's. Sorry to sound negative. I do have hope for me, and your mom, and all of my girls (and guys) here....it is just easier to deal with if you realize that you dont have total control over it and that is just the way it is. You can be smart and informed...and have good doctors and meds...and sometimes you still just arent gonna feel good. Thats the way it goes. Good luck..keep us informed! Let me know how you like the book too!
Are you going with her to her next appointment? The first trick is getting diagnosed. The next trick is finding the right drug(s) for the individual that works. Let us know how it goes!
I would try to get here involved here but she is not internet (or computer) literate. She is a very traditional stay at home mom. But I will relay back and forth with her questions and your answers. That's not a problem for me at all.
I should add that its not just me helping her. My father and brother (only other sibling) are also right there. She, with the will of God, gave me life, the least I can do is try to make hers easier.
Certainly knowing is a big relief...because treatment is a big deal. It is important that she has support from her family. Not all of us RAers have that. You are doing alot for her. Let us know what you find out at the doctor.- Joy
First, I ordered the book and it should be here soon so I can start reading right away.
Secondly, my mother went to her first RA appointment today. I didn't get to go but my brother took her. I wish I could have gone. I would have taken notes and had more to share with you all. Nevertheless, my brother says that from the moment the Doc shook my moms hand, she knew it was RA. However, there was some insurance related issues and she referred my mother to another specialist who takes her insurance. So the visit wasn't that productive. She said that they needed to do more blood work to rule out other disorders like lupus, etc. but she was pretty certain it was RA. My mother actually liked the doctor...that was shocking to hear. The doctor also said she prefers to begin with Enbrel injections. My mother is already taking Celebrex every now and then to get moving around. I tried reading thorugh some other topics but which medications have more people found to be effective, if any?
She will be going to another doctor tomorrow.
Thanks again to you all. It's hard watching a woman that lived her life as Superwoman, doing anything and everything for us, cringe while putting on soft slippers.
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