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Doctors' Answers to "Frequently Asked Questions" - Multiple Sclerosis

These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

Multiple Sclerosis Diagnosis [posted 11/10/98]
Question: What is the average time that a patient with subtle symptoms is diagnosed? I have been experiencing symptoms that point to MS, yet, the doctors arent sure what it is. This has been going on for 2 years now, with symptoms slowly getting worse. My tests have all been normal so far, with a normal MRI of the brain done a year ago. I have since switched doctors and this one wants to have the MRI repeated, and include the neck area too. Is it normal to have to wait so long and still not be diagnosed?

Answer: MS is a funny disease in that the symptoms and lesions can come and go. There are some tests of spinal fluid etc which point to a diagnosis;but, MS is a diagnosis of exclusion. That is, there is no one test that will diagnose the problem. Usually, it is preferable to have the waxing and waning type if that is truly your diagnosis. But, each of us has several patients who have been in this bind and it is frustrating.

Multiple Sclerosis Inheritance [posted 8/7/98]
Question: What is the probability of a child of an MS sufferer getting the disease?

Answer: We don't think MS is hereditary, however, we don't know the cause and some think it may be infectious. In general, there is minimal to no risk for the children of MS patients to develop the disease. This view might change as we understood the cause of the disease.

Multiple Sclerosis and Roxanol [posted 8/6/98]
Question: I have Multiple Sclerosis, and was recently prescribed Roxanol, to which I had a bad reaction requiring an ambulance ride to the hospital. I am also hypothyroid. In reviewing the Roxanol literature, I see that they say that special care should be taken when prescribing it to someone who is hypothyroid. I am wondering if this was a mistake to have given me this medicine. Also, I have now been prescribed Prolixin for pain, but in light of my recent experience with Roxanol, and because I see that some of the potential side-effects are quite severe, I am afraid to start taking it. I would be very grateful for any help you could give.

Answer: You are only hypothyroid if you are not receiving sufficient levo-thyroxine replacement. I doubt that this would be the case, subsequently, there is no special precaution in taking any morphine based product concerning thyroid status. There would be caution in giving Roxanol or any morphine based drug if the patient was hypothyroid due to metabolic differences. Secondly, Prolixin is a completely different class of drug. Side effects and metabolism are completely different. While you should use caution and start at low doses, there should be no comparison between Prolixin and Roxanol.

Multiple Sclerosis
Question: I have heard stories of people having MS for 17 years and others being told they have just been diagnosed with it and might live 2 years. Is this true? What symptoms and neurological signs lead a physician to believe a person with MS will only live for 2 more years? Are there any good books on MS for a family member to read? (other than medical reference books).

Answer: MS is a funny disease. Some patients have a "flare" and no subsequent disease for many years, others develop rapid progressive disease unresponsive to any therapy. There is an MS Association, and I would contact them. There are also new treatments also released, which will probably change MS outlook quite a bit.

Multiple Sclerosis
Question: If a person with MS is going through an attack and doesn't take medicine right away, is that person doing more damage by waiting?

Answer: It is not currently clear. Common sense says that aborting an attack will preserve neurologic function, and this is the bias of medical treatment. However, there are no controlled studies and probably never will be.

Cerebral Palsy and Multiple Sclerosis Speech Disorder
Question: My sisters speech has gone down hill this year to the point where you can hardly understand her, and it is really getting her down. Are there any medications she can take to help? I saw on the internet where people are taking ACTH and I read where someone took something and it helped but at the time her speech was normal and now I can't find that information.

Answer: ACTH is commonly used in flares of MS, usually with some success. There is a whole new type of drug ready to be released in MS which has the potential to completely change out treatment of MS-- these drugs should be released in 4-6 months.

Multiple Sclerosis
Question: My brother is having an MRI to test for MS this afternoon. What exactly is MS and if he is diagnosed with it, what can be done? What kind of life can he expect to lead?

Answer: MS is a condition where the body "turns on itself" meaning that it directs the inflmmatory response against the coveing of nerves rather than the usual targets such as bacteria and viruses. There are new therapies for MS and if your brother should turn out to have MS he should get under the care of a neurologist(if he's not already seeing one), as MS is a neurological disorder. MS is unpredicatable and therefore, it is very w difficult for anyone to say exactly what the future will hold.

Oral Steroids
Question:I have MS, in December and again in June I had oral steroids for approx. 3 weeks each session. Both times I was subject to severe side effects including heavy gum bleeding and an incredible plaque buildup. I recently found out that I have had major bone loss in my jaws and most of my teeth will need to be removed. My neurologist believes that I haven't had enough steroids to produce this effect but he was reluctant to put me on steroids after a recent exacerbation. If I had this much bone loss to my jaw I must have had bone loss elsewhere, I cannot seem to get an answer from anyone regarding calcium supplements at to amounts and which kind, I am very confused.

Answer:Steroids have mixed blessings. While they decrease inflammation and immune response they also accelerate most of the aging processes of the body. One of these is osteoporosis. Osteoporosis is commom as one ages and occurs more rapidly if there is no sexual hormones(like estrogen, progesterone and testosterone)available. There have been numerous studies documenting the bone loss inherent in use of steroids. In general, it is related to dose and duration-higher doses for longer periods are more of a problem. Most physicians who use steroids for any long duration recommend use of vitamin D and calcium supplements during steroids and bone density measurements. The evidence that this helps is sketchy;but, leans towards improvement with this treatment. Studies are in progress concerning use of calcitonin and alendronate sodium during steroid treatment.
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