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HOW DO I GET MY NEUROLOGIST TO TEST FOR AND RULE OUT MS??
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MOM5XOVR posted:
I guess I should give a brief background of my situation and hopefully I can get avise on how to proceed. I was a very athletic as a child and participated in competitive gymnastics. Almost from birth constipation has been a huge problem and issue for me, I would get dark circles under my eyes and even run a fever at its worst. Adolescence helped some but I usually would only move my bowels right before my period each month. Basically I only went one week out of a month, but at least I went. I have been difficult to wake up for as long as I can remember, but a severe bout with mono seemed to be the start of a lifelong issue with excessive sleepiness. For years it was the family joke, I would fall asleep talking to people and could be asleep in a second at any time. When I was pregnant with my fourth child I began having pain and numbness and tingling in my arms and hands, which they diagnosed as carpal tunnel syndrome. This lasted almost continually or three years before it subsided. In addition I have complaining of lower leg pain which to date there has never been a diagnosed cause determined. About 7 years ago when I was nearly killing myself driving due to falling asleep and even began to dream while I was supposively awake, a sleep study concluded I have narcolepsy. I am not convinced this an accurate diagnosis, but my neurologist seems to have ruled out MS just because I do not demonstrate the walking gait of his other MS patients. Other symptoms have arisen and each time they are all treated as separate issues, but all seem to point to possible MS to me. NO one has ever tested to rule it out. I know I suffer from a severe vitamin D deficiency. I also have severe bladder control issues and at 47 it is pretty embarrassing for this to be an everyday issue, I do not go anywhere without bladder control protection on. IBS is the diagosis for the bowel issues and all I know about the bladder control issue is it isn't cancer. I have complained of musle weakness , but due to my previous muscle development doctors don't consider me weak. Everything is getting worse now,mediction doesn't control supposive sleepiness caused by narcolepsy. Leg and hand pain and weakness is more frequent and severe. I have begun to experience odd vibrations in my pelvic area which initially had me searching for a cell phoe, this is what it fels like a vibrating cell phone. This is intermittant and comes and goes. Going down steps my legs vibrate and feel weak, going up steps and walking feels like it takes huge amounts of mental effort a well as physical effort. It is as if I am forcing them to move. Was diagnose with ADD from a child, but have been really struggling with attention and mental confusion to a degree that alarms me. Every day it is something different or new. Yesterday my right knee felt weak, unstable and hurt. Knee still weak but no pain today. Today the muscles in my upper arms hurt an my hands feel weak. My hips bother me off and on and so does my right foot. I am tired of seeing multiple doctors for each different thing only to find out nothing, does it see reasonable for a doctor to at least rule MS out?
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hackwriter responded:
Dear mom5xover,

Your history of mono and vitamin D deficiency should be of at least some passing interest to your neurologist, especially in light of your symptoms. Those two conditions suffered early in life will raise a person's risk for developing MS, according to some reputable studies.

If you had listed your symptoms without those two pieces in your medical history, I would have said that your symptoms are nonspecific, meaning that any number of conditions can cause what you are experiencing and MS is probably not what you have since it is so rare. A degenerative spine problem such as stenosis, for example, could also cause your symptoms. Having a spine MRI could reveal a host of things: demyelinating lesions, tumors, herniated discs, arthritis, stenosis--things that could be making you feel the way you do. At the very least, this kind of test could rule out a bunch.

If indeed your neuro's reason for no MS testing is solely because you aren't exhibiting the motor dysfunction he sees in his other patients, then either he is not very well-informed about how MS can manifest itself or he has other reasons for not doing the tests.

You might consider seeking out another neurologist for a second opinion. Moreover, if your narcolepsy meds aren't effective, you must tell the prescribing doctor about it so he/she can either adjust the dosage or try a different med. Treating and tracking your diagnosed conditions is important, as this will be valuable information to a neuro. A narcolepsy misdiagnosis, for example, could be more easily revealed if you have a record of treatments that have proven unsuccessful.

It's up to you to take charge of your care and seek out a doctor who will listen to you; it is also the responsibility of the patient to report to a prescribing doctor that a medication is not working. They cannot investigate it if they don't know that there is a problem.

Please do let us know what you decide to do and update us on the result. I hope you don't have MS, but if you do, there are lots of resources that can help ease your journey.

Hope this helps.

Kim


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