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Have stiff and sore with joint swelling and muscular pain. Had weakly positive carpal tunnel syndrome. Suggestions?

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Practicing since : 2004
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Hi my name is XXXXXX. I will try to make this as brief as possible but I will cram information from the past 5 years or so of medical investigation into my daughter's strange ailment.

Her whole body is very stiff and sore w/ joint swelling and muscular pain. She is almost 23 (in two weeks), this started at age 18. She finds it difficult to use her hands for fine motor tasks now. She has no grip strength anymore in her hands. Her hands are by far worse than all other areas, but this is a whole body illness of some kind.

Over the past 5 years with a variety of physicians and specialists, she has had MRIs, x-rays, EMG, NCV, and many, many blood tests. We still don't have a diagnosis! She has only had a very minimally weakly positive XXXXXXX carpal tunnel syndrome in bilateral hands (but we were to understand the CTS was an effect of whatever else is going on and not a cause), and a low vitamin D level. On x-rays and MRIs there was only swelling detected. Constant RA factors have been negative along with all the other "rheumatoid" type blood tests.

For a while she carried the diagnosis of nonspecific polyarthritis. She was also told it was probably sero-negative rheumatoid arthritis, then they redacted that diagnosis. They are pretty sure she fits the criteria for fibromyalgia as well on top of the joint problems (it hurts my daughter to receive a hug). She has failed treatments of Enbrel, Methotrexate, Hydroxychloroquine, Meloxicam, and the only thing that has ever given much relief is Prednisone (taken at 10 mg a day for two years). She became scared and in denial when her former rheumatologist told her she wanted to advance to Rituxan infusions 6 months ago. At that point she stopped taking all of her medicines, and started looking at food allergies or environmental allergens as a cause. We invested in a new water treatment system -- reverse osmosis for drinking water. We have given her trials off wheat products -- no help. We have tried a trial off dairy products -- no help. At this point, it will take us years and she will suffer permanent joint damage by trying the several weeks elimination process just to try to find a culprit and not knowing whether we are barking up a wrong tree or not!

As parents we are exasperated, and as a young woman, my daughter is discouraged. She attends Ball State University as a Theater major with a Creative Writing minor, but at this point she carries doubts that she will ever be able to actively pursue her theater dreams. And, the saddest thing of all -- she has a tremendous gift of a beautiful voice. Whatever this problem is, it seems to attack the joints/cartilage. She has been taking voice lessons for 1-1/2 years, and her voice teacher has been trying to help her eliminate the tension that is in her voice, but we wonder if it could be inflammation in the laryngeal cartilage causing the tension.

So my daughter refuses to go back to her rheumatologist because of fear, and wants a second opinion before taking a step into the type of XXXXXXX chemotherapy agent that Rituxan is. Please help us. Where do we turn? Family members have urged us to seek help from either Cleveland Clinic or Mayo Clinic since it has been years and multiple tests with no conclusive treatable diagnosis. Should she see an allergist/immunologist? Should she seek one of your Rheumatologists? Should she see another traditional MD or travel the route of osteopathic medicine? Perhaps she should see a specialist in difficult to diagnose diseases? I don't know which way to turn.

I only know that my daughter cannot continue to ignore the presence of this disease process in her body. She is far too young to have lifelong joint damage from this unknown invader. We have to find out what is wrong and get her on treatment that will help her.

Thank you for your time and your information.
Posted Fri, 11 Oct 2013 in Lupus
Answered by Dr. Chakravarthy Mazumdar 10 hours later
Brief Answer:
Rare cases

Detailed Answer:

I understand the problem and empathize the situation that you are in for your ailing daughter. I am happy that she is able to continue with vocal training for sometime. I do not think there is a chance of inflammation in the laryngeal cartilage. You can check with the local ENT by an examination. I attribute this to her constant pain and low mood because of her chronic painful condition. It is right on the teacher to train her and relieve her tension.

However she needs a holistic approach to find the way the pain can be relieved. Prednisone is wonder drug and it actually helped a lot of situations for doctors. It improves the quality of life for most individuals in Rheumatology practice.

I think you should pursue to understand the diagnosis and later choose to go in for Osteopathic and Naturopathy therapy. A Rheumatologist should be able to pin the diagnosis. You can see either XXXXXXX one in reputed clinics like Cleveland or Mayo. You will have the opportunity to XXXXXXX an Immunologist at such centres.

Since your daughter is not willing to see the same Rheumatologist that treated her all these years it is better to opt for another. Else you can XXXXXXX Rheumatologist Dr. XXXXXXX H. Beers at St. XXXXXXX Physicians Infusion 2765 Chapel Pl Suite 200, Crestview Hills, KY 0000.

It is important to accept the fact that many such diseases are heterogenous a lot depend on the genetic and environment. The doctor has to accept the reality of rare disease and work with the patient to understand its nature while giving the patient improved quality of life and a proof of confidence that he strives to work towards patient's betterment. This is an art and few physicians mastered this. You can write a Rheumatologist here on this forum and ask for an opinion before choosing to XXXXXXX the above.

Thank you.
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