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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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MOM5XOVR replied to hackwriter's response:
Symptoms come and go and often ordered tests aren't done at the moment when things are flared up. Blood work at a time when I was suffering symptoms showed autoimmune issues leading toward rheumatoid arthritis and sjogrens(sp??). Sent to rheumatologist who retested when symptoms were dissipating and rheumatoid arthritis ruled out but still positive for the other. Doctor doesn't feel treatment needed but is monitoring. There are days when my body feels almost normal other than the excessive sleepiness we try to control with medication and the constant bladder control issues. Most days the mental confusion and inability to concentrate are frustrating,I forget things or just can not think straight and when it is at its worst the physical symptoms also seem to appear. I have been complaining about leg and feet pain primarily from my knees down since my late 20's to early 30's.My bowel issues have been present my entire life, the bladder issue is embarrassing and no cause has been identified, the ADD issues are expected but often intensified to a level that interferes with life(my narcolepsy medication is also a treatment for ADD), the excessive tiredness is only managed when other symptoms are not present and medication does not work at these times, the leg discomfort as I call it is constant(they feel sore and tight constantly), but when they flare up both of my feet and legs just outright hurt making walking a huge effort. Although staying off of them seems to prevent a worsening of the pain it does not do much to alleviate it. It just comes and goes without warning, but often lasts for days if not weeks. Pins and needles in my hands and arms are also intermittent, it occurs regularly but the duration can be short or long. The longer periods result in extreme weakness limiting the ability for me to lift grocery bags etc. It seems every symptom is treated as a different issue and results in multiple specialists. Neurologist, rheumatologist, urologist, opthomologist, gastrologist, orthopedic, and vascular doctor to name a few and I am tired or not getting answers. I have already made it known that I want my body donated to science after I die because I want there to be answers to all this even if it occurs after my death, hopefully it will help someone else. I do not want to have MS, but it was a previous coworker who has MS who felt what I was experiencing was similar to what she goes through and suggested I investigate. Unfortunately her health deteriorated and she is no longer working for me to obtain information on what neurologist she sees and the one I currently see follows my previous neurologists treatment.. The old one moved and I had to quickly get a new one to obtain needed medication. Since the new one deals mostly with MS patients I thought for sure he would at least be open to testing to rule it out as a possibility, but as I said before he does not see the weakness I know I have and is not concerned with my gait. Besides being a very well developed muscular gymnast, I was also an avid weight lifter. I had the strength of a man, so I feel when my strength is tested it is being compared to that of a normal woman. My strength may still be at or above most women on a good day(but is significantly below my normal strength level) and at its worst is reduced to that of a child or elderly woman. I just find it hard to understand why an MRI is just not ordered to try to rule out the possibility of MS, it may be costly but could possibly identify something to explain what is going on with me. At this point an MS diagnosis would be a blessing not a curse since I would at least have an answer and the possibility of receiving proper treatment to address the issues. My concern is that the frequency and length of episodes has been increasing as I age and I am worried that if it is MS a lack of proper treatment could result in a rapid deterioration that could have possibly been avoided.


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