Jim's MS Gallery
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Story from Jim's hometown (Olean, N.Y.)
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Man believes he is misdiagnosed
By DAWN KARL , The Times Herald 09/23/2003
When symptoms of pain in the mid- to lower back began, David thought he had injured his back.
Now he is trying to get a proper diagnosis for what is wrong with him. David is from Allegany and asked that his last name not be used in this article.
In 1999, he began collapsing when his knees would buckle. In Jamestown, where he was living at the time, he was diagnosed with having a bad back and arthritis.
Then his migraine headaches began to get worse. He was tested for multiple sclerosis but the test came back negative. In 2001, he moved back to Allegany. His symptoms progressively became worse.
He was diagnosed with having a ruptured disc and was prescribed muscle relaxers and anti-inflammatory medication. One doctor, he says, was extremely rude to him and basically told him it was all in his head.
"I really think I had prejudice against me," David said.
The doctor told him to try hot and cold water compresses for the back pain and his legs. He said he had already tried home remedies but they didn't work.
In the middle of 2002, David began to need a cane or a walker. He eventually started using a wheelchair.
"I was in a wheel chair because of the pain I was in, especially in my legs," he said.
His symptoms including migraines, tremors, pains in his eyes and chest and loss of balance, memory and speech were getting worse. An MRI of his brain showed shadows behind an eye but nothing was done.
After a visit with a rheumatologist, David was diagnosed with fibromyalgia, which is pain in the muscles, tendons and ligaments. Again, David believes this doctor was rude, resulting in his switch to another doctor in Olean.
"That's when the forest fire broke out," he said.
About a couple of months ago, David tried to change his steroid medication to a lower dosage. His new doctor told him he was addicted to prescription drugs and should stop taking his medications. After that accusation, he stopped going to that doctor.
He believes if the doctor thought he was addicted, he should have tried to say it in a gentler way. David said he is not addicted and was trying to get a lower dose of medication. The accusation is now in his medical file and is preventing him from getting muscle relaxers from other doctors.
"I don't like to take them but it's what gets me through the day," David said.
He added he is extremely careful about the medications he takes and makes sure any new medicine is all right to take with his other medications.
"If I was an abuser, I wouldn't care what they give me," he said.
David was in the emergency room seven to eight times because he couldn't breathe. He was told it was anxiety attacks but after a doctor's visit, he was diagnosed with pneumonia.
He is happy with the doctors he is now seeing. After looking at his record, a local neurologist referred him to the Neurology Institute in Buffalo. After falling during a walking test, he also was referred to an MS clinic in Buffalo.
"I feel sorry for the people out there with dealing with symptoms," he said.
David contacted Deborah Heysham of Olean after The Times Herald ran a story in July about her struggle as she sought a correct diagnosis. She was finally diagnosed with MS after seeing various doctors.
He urges other people not to be afraid to speak up to their doctors and to seek second opinions. His friend's mother has MS and his symptoms are similar to hers. Although an earlier test for MS came back negative, it could have been affected by the medication he was on.
Currently David is waiting to see what happens with the doctors in Buffalo.
"I'm standing in the middle of the road with my arms up in the air," he said.
He added he is not blaming the doctors he saw. He hopes the doctors find out what is wrong with him before his symptoms get worse.
©The Times Herald, Olean, N.Y. 2003
COMMENTS? Send mail to: news@oleantimesherald.com
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Disappointing Results for Oral Interferon Beta-1a Study
In another setback for the development of oral treatments for MS, a group of scientists from The Netherlands has reported that an oral form of interferon beta-1a, the active ingredient found in Avonex® and Rebif®, failed to demonstrate benefit in patients with relapsing-remitting multiple sclerosis (RRMS). The results of the double-blind, randomized study were published in the August 9th issue of Multiple Sclerosis. (1)
Researchers from the Free University Medical Center in Amsterdam followed 174 patients with RRMS at 15 different medical centers for six months. Patients received one of three dosages of oral interferon beta-1a and were evaluated monthly with a clinical examination and MRI scan. To determine efficacy, the researchers used the number of newly active lesions and the volume of lesions as the primary and secondary variables, respectively.
At the completion of the study period, the researchers found no significant differences in newly active lesions between the placebo group and the patients receiving the active ingredient (in any dosage). They also determined that the differences in lesion volume between the two groups were small and inconsistent. As a result, the study authors concluded that the oral treatment showed neither beneficial effects in RRMS nor any systemic biological effects.
In recent years, researchers have begun working to find an effective formulation of the immunomodulator drugs (Avonex®, Rebif®, Betaseron®, and Copaxone®) that can be administered orally, thus eliminating the need for injections. A study of oral Copaxone® conducted in 2001 also failed to demonstrate efficacy at its interim analysis. Both studies did find that oral treatments appeared to be safe, however.
1. Polman C et al. Oral interferon beta-1a in relapsing-remitting multiple sclerosis: a double-blind randomized study. Mult Scler 2003 Aug 9(4): 342-8.
-- Courtesy Spotlight Health
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Does Depression Contribute to Fatigue in MS?
While it has been suspected that depression may contribute to fatigue in patients with MS, there has not been much data to validate the association. Subsequently, treatment for depression has not been a standard component of the treatment for MS-related fatigue. But a new study published in the July/August issue of Psychosomatic Medicine may change that.(1)
Researchers at the University of California at San Francisco examined 60 patients with relapsing-remitting multiple sclerosis (RRMS) who also suffered from moderate to severe depression. Patients were assigned to one of three depression treatments for 16 weeks: individual cognitive behavioral therapy, group psychotherapy, or an antidepressant medication.
At the beginning and end of the study period, the investigators measured the patients' fatigue and depression symptoms through standardized assessment tools. In support of their hypothesis, they found that treatment for depression was associated with reductions in the severity of fatigue symptoms. They also found that this improvement stemmed primarily from treatment-related changes in mood.
Although further research is needed to confirm this relationship, these findings suggest that treatment for depression may not only improve the patient's mood, but also his or her energy levels.
1. Mohr DC et al. Effects of treatment for depression on fatigue in multiple sclerosis. Psychosom Med 2003 Jul-Aug;65(4): 542-7.
-- Courtesy Spotlight Health
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We are happy to report that over 900 people have taken the cognition survey during the last eight weeks or so. As usual, we have made the responses to the survey available so that each may learn from the experiences of the group.
If you are interested in reading our detailed review of the subject, participating in the survey, or learning what others have found helpful, please click on the following link.
I want to participate in the survey about thinking, remembering, and learning.
(Remember, your Username and Password are both you full email address including the @ symbol. If the link does not work, see the directions below.)
The survey should take about five minutes to complete and your answers, of course, will be stored completely anonymously, unconnected to any identifying information about you, including your email.
Thank you for your interest.
Sincerely,
Allen Bowling, M.D., Ph.D.
Tom Stewart, PA-C, J.D.
Rocky Mountain MS Center
PS Please forward this email to anyone you think may be interested. Those who have signed up previously and changed email addresses may no longer be receiving our newsletters.
Technical matters:
1. If you have received this newsletter then you are properly registered at www.ms-cam.org. Remember, your username and password are the same, your full email address including the @ symbol.
2. If you cannot access the website by clicking the link above, please cut and paste (or, type if you use Netscape) the following into your browser: http://www.ms-cam.org/surveys/cognition/index2.html
3. If you would like to change your email address, please cut and paste the following link into your web browser: http://www.ms-cam.org/change.html. To login, you will need to use your current email address (the address that we used to send you this newsletter) as both your Username and Password. You may also use this to unsubscribe. If you want to unsubscribe, simply leave your new email adress as a blank field.
-- Courtesy Rocky Mountain MS Center
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* Information included in this newsletter is gathered from a variety of sources. Jim claims no responsibility for the accuracy of information ...