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In reply to the discussion: Got some devastating news yesterday - I have Multiple Sclerosis [View all]LostOne4Ever
(9,752 posts)[font style="font-family:'Georgia','Baskerville Old Face','Helvetica',fantasy;" size=4 color=teal]She was diagnosed with MS back when I was 12 years old in 1995.
She went to the Scott and White Clinic in Temple Texas for a bad knee she was having trouble with(she had torn all the ligaments in it years ago) and a low grade fever that would not go away. While there one therapist was examining her knee and told her that the problem she was having was not the ligaments and sent to her to neurology.
They ran a bunch of test and a spinal tap and diagnosed her with Multiple Sclerosis. My mom has been managing it ever since then.
Most people diagnosed with the disease start out as relapsing remitting (where they have periods where they get better and worse) and eventually develop into chronic progressive (where they just get worse and worse), but she started out chronic progressive from the beginning. Within a year or two she lost the ability to walk. Currently her left leg is completely paralyzed and can barely move her right leg or left arm. One area where she has been lucky, is that it really hasn't affected her vision, but a stroke a year or so ago really hurt her there.
Most people with this disease fight with depression, but my mom has always remained positive. She accredits a strong family support for her positive outlook.
She takes Baclofen and Tizidine for her muscle pain, gabapenten for her nerve pain, and amanadine for fatigue. It seems to work well. When she first got diagnosed they put her on Betaferon injections. They did not help much. She tried a variety of different drugs and none of them provided much help.
Finally, they put her on some chemotherapy drugs which helped alot. In particular, she benefited from Mitroxantrone but they would only keep her on that for 2 years. Afterwards they moved her to methotrexate which not only slowed her progression but helped her with her arthritis
She used that for many many years until just a few years ago. Her Neurologist (we have been through many of them) at that time wanted to get her off methotrexate and get her started on Avonex. They decided to give her both and it worked really well and from there we stopped the methotexate altogether.
She has been very stable and our current neurologist ran an MRI just a month ago and said that not only do her nerves look less scarred, but appeared to have healed some. Of course he cautioned us that all they could see was the outside of the nerves and the insides could be a different story.
I should also mention that she added in a bunch more apples and raisens into her diet and she feels that has contributed to the good MRI scan.
Hopefully, your case won't be as severe as her's has been. That said, I am not going to lie to you and say it is an easy disease to live with. It is a very hard disease. But it is not a deadly disease (in and of itself), and with the right support, it is manageable and it is possible to have a fullfilling life. Don't give up you can make it through this.[/text]