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Old 05-15-2007, 08:08 PM
michael178 michael178 is offline
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Join Date: Mar 2007
Location: south dakota
Posts: 225
15 yr Member
michael178 michael178 is offline
Member
 
Join Date: Mar 2007
Location: south dakota
Posts: 225
15 yr Member
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for MS, the next step is a spinal tap to analyze the spinal fluid for signs of MS. A positive test coupled with a suspect MRI are the two thins that would determine a MS dx. Some of your symptoms sound like MS, but symptoms are so varied with MS that they almost do not matter (except, of course, to you). Take your MRI to every first visit with any doctor. Your neurosurgeon might be a great surgeon, but that does not make him a good diagnostition.
I recommend you look up the MS society and visit the office closest to you. They will be very helpful especially when it comes to selecting a neurologist. And they know where there are good ms clinics....it is worth a visit to one of those. I traveled several hours to go to a Ms clinic in Portland OR and it was the best thing I did. my records were reviewed by a team of doctors so I got the advise of the best one. It turns out that they did not think I had MS, instead I had a leukodystrophy (a family of fatal white matter diseases that mainly affect children) I spent the next four years tracking down what I have, but now I have similar opinions from Oregon Health and Science University the genetics lab at the UNIV of WA, and a research group from NIH. But that knowledge will help me down the road.
So, I think you are right, you do have time to get this right. I spent three years fighting a disease that I did not have (MS) and all I got out of it was a little bit of an education on the disease, along with a lot of time and energy wasted. But now I can pick and chose the best thing for me to do, and I can determine why things are happening to me, and what it ultimately means. I know I have only a few good years left to live, for instance. Ultimately dementia will overwhelm me, so my wife and I keep track of all the problems dementia is starting to cause, we can then start to plan all of the end of life concerns, and together we will know when it is time to apply for assisted living care. (my wife and son are both disabled with final stages of COPD and a mental illness, so it is important that I participate in all of these decisions)
I grew up in a medical community. My father was a neurologist at the mayo clinic. I mention this because I am always a bit perplexed at people confidence in a doctor's certifications. I never thought they meant much. I was always referred to doctors by my father who knew their work and reputations. And there a lot of highly recognized physicians who my father thought were quacks including a nobel prize winner (for the discovery of cortisone) and there were many many unrecognized and undecorated doctors my father thought the world of (including the doctor who did most of the work on cortisone)...so selecting a doctor is difficult, it is a bit of a crap shoot. that's why the MS society is valuable. They talk to and track the patients and they hear the complaints, and they know the doctors in your community...so does you family physician, so you might ask his advise. it is a big part of his job to make sure the doctors you go to are good ones.
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