Fw: MS Questions and Answers: Disease Types and Treatments

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Sent: Thursday, September 27, 2001 3:08 AM

Subject: MS Questions and Answers: Disease Types and Treatments

Thank you Pat, we can all profit from this news on MS, please pass this on to your contact list. Pat, works very hard daily researching valuable information to help all of us, your work is appreciated by me, Pat. Be Happy Today, make everyone count* \MS Questions and Answers: Disease Types and Treatments

MS: Disease Types and Treatments Question: I am a 39 year old male with ms. everything I read about treatment and medication is about the remitting and relapsing type of ms. I was diagnosed over 5 years ago and to my knowledge I have never been in remission. How can Iknow for certain that I have the chronic progressive type of the disease? are there any proven treatments for this type of ms? medications, etc.....I have an intense weakness in my legs and getting worse. what can I do to strengthen my legs? I had the iv cortisone followed by prednisone dose pack about 5 years ago. Would that help again? Thank you for your reply. Answer: Multiple Sclerosis has been broken down into several disease types. The majority of patients have relapsing/remitting which may then turn into secondary progressive type. The situation you are describing may be a form of illness called primary progressive multiple sclerosis. This type tends to affect the spinal cord more than other areas of the nervous system.! It is not clear whether this is the same mechanism working in primary progressive as one may see in relapsing/remitting or secondary progressive multiple sclerosis. The only way to know for certain would be to see your neurologist and bring the question to him. You may require an additional opinion from a specialist in multiple sclerosis. Before proceeding for treatment for this type of multiple sclerosis, you do need to have this situation clarified. Your other question concerning the weakness in your legs with worsening may benefit from treatment with a course of intravenous Solumedrol, as well as physical therapy. Sometimes spasticity or extreme stiffness may develop, and measures to alleviate the spasticity through physical therapy or medications may be helpful as well. Again, some of the questions that you ask would require an evaluation in an office to give you the best advice for treatment. I strongly encourage you to see your neurologist and ask these questions for ! a definitive answer in your situation. S. Murray, M.D., President and Medical Director, MS Center, Denver, CO Question: Could you please advise on the news out of L.A. regarding a new treatment. Has to do with the removal, treatment and reinserting the patient's own bone marrow. Saw a T.V. news story on a Charlotte, NC station that gave very exciting news. Saw story on 11/19/97 and the story was about somewhere in L.A., CA. Need to know who, what, where, when and how???? Please Help with info. Answer: The treatment you are discussing is related to a bone marrow transplant. This is a very serious form of intervention in multiple sclerosis which we are awaiting results of some cases that have undergone this form of intervention. To date, no firm data are available. I have not seen or heard of the story that you are referring to from November 19, 1997. 1 would contact your local MS Society or the MS specialty clinics in Los Angeles to see if more specific information is available. The information you are referring to has not reached my office at the MS Center. S. Murray, M.D., President and Medical Director, MS Center, Denver, CO. Question: Can Benign MS, turn into Remitting Relapsing MS ? I have Remitting Relapsing MS, and I have had it since 1991. That was my first episode that I can remember. How long before 1991 could I have had it? Thank-you for your answer. Answer: Your question regards the activity and clinical course of multiple sclerosis. Clearly, after a period of sustained remission, multiple sclerosis can become active, following a relapsing/remitting course after it has been quiescent for many years. It is not clear what causes a benign form of MS to become more active in relapsing/remitting nor progressive. It is nearly impossible to date the onset of MS prior to your diagnosis of 1991 except by your historical recollection of neurological problems. You may want to discuss this issue further with your physician if timing of onset is a critical factor for you. S. Murray, M.D., President and Medical Director, MS Center, Denver, CO Question: A FRIEND OF MINE HEARD ON THE RADIO ABOUT A STUDY ON THE COOLING OF THE BODY TO TREAT MS PEOPLE. HAVE YOU HEARD ANYTHING ABOUT THIS? Answer: You have heard about cooling of the body to treat people with multiple sclerosis. The Rocky Mountain Multiple Sclerosis Center is involved in research looking at this approach. It turns out that many patients are sensitive to heat and suffer a decline in function. This turns out to be directly related to elevations of core body temperature. Thus, patients have noticed that in cooler environments and with lower core body temperatures, functions may improve. Improvement in function is not dramatic, but it may be enough to make a difference for a person to get through an entire day. Cooling research will hopefully help facilitate rehabilitative efforts in many patients as well. Thus, cooling studies for MS patients are being looked into very intensely and, hopefully, will prove to be meritorious. S. Murray, M.D., President and Medical Director, MS Center, Denver, CO Question: My wife is a 42 y/o WF who was diagnosed with "malignant MS" in February 1998. She was treated with a 10 day course of Cytoxin, and ACTH, both IV. She is now receiving Cytoxin every four weeks "for the rest of her life". I know that it is tough to have such limited information but I guess the real question is: Is malignant MS the same as progressive MS, if so what is the state-of-the-art treatment plan? Answer: Your question relates to a very severe form of multiple sclerosis. Often, this form of multiple sclerosis is characterized by very rapid, progressive loss of abilities. MRI studies that have done on patients in this situation show a changing brain pattern of lesions as well. Thus, your physicians have probably determined that a very aggressive form of treatment was warranted. Cytoxan has proven to be a very effective form of intervention for severe situations of multiple sclerosis. On the experimental side of things for very severe multiple! sclerosis is bone marrow transplants. You may want to discuss this with your physician, should your wife not respond to this form of intervention. S. Murray, M.D., President and Medical Director, MS Center, Denver, CO Question: What role do you see for combination drug treatment (ie. methotrexate/decadron) in primary progressive MS? What is your opinion of Avonex in the treatment of primary progressive MS? ( I have heard that the European studies were with positive results, but the USA's not so successful) Is it true that in primary progressive MS, vision is not affected? Also, that MRI scans can be negative (minus plaques) sometimes and then positive (with visible plaques) at other times? Answer: Your question deals with the effective treatment of primary progressive multiple sclerosis. Primary progressive is a form of MS characterized by very slow progression over time as documented by disability status, i.e., there is a loss of ability over time. In general, relapses are not present that can be identified as a clear-cut change with remittance. The therapy for this form of multiple sclerosis has not been as encouraging as the intervention for relapsing-remitting multip! le sclerosis. The available immunotherapies have beert tried with mixed results. Methotrexate and Decadron combinations have gained favor in recent years and do slow down the progression. However, the definitive treatment remains unknown. Several companies are beginning to treat primary progressive MS with interferon, Copaxone, or other forms of chemotherapy. It is true that in primary progressive MS, MRI scans of the brain show very minimal changes. The brain MRI clearly appears not to be as affected as seen in relapsing-remitting or secondary progressive multiple sclerosis. Nonetheless, disability may be much higher in this form of multiple sclerosis. In summary, the best prophylactic treatment for this form of MS has yet to be determined. Most practitioners will try combinations of the agents that are currently available. S. Murray, M.D., President and Medical Director, MS Center, Denver, CO. 10/98 Question: What is your feeling on the benefits of hyperbaric oxygen in treating some symptoms of ms? I have had ms for a long time now and would benefit from the claimed results of hyperbaric oxygen. Answer: Hyperbaric oxygen has been found not to be effective in treating the disease nor symptoms of multiple sclerosis. I would be wary of entering a protocol involving hyperbaric oxygen based on the medical evidence available. S. Murray, M.D., President and Medical Director, MS Center, Denver, CO. 12/98 Question: Dr.s have recommended Cytoxan therapy for my husband's MS. I would appreciate any thoughts you have on this;ie: reactions good or bad. Thank you Answer: Cytoxan immunotherapy has often been reserved for patients refractory to other medical treatments in multiple sclerosis. Usually, patients are having increased relapses or progressing and losing function without other treatments being very helpful for this. Thus, if this is a situation occurring for your husband, Cytoxan may be very beneficial. Obviously, I am assuming that other treatments have been tried for control including one of the immunomodulary agents with beta interferon or glatiramer acetate. S. Murray, M.D., President and Medical Director, MS Center, Denver, CO. 12/98 Question: I am a RN my friend who has just been diagnosed with MS is also an RN. We have a physician friend who was recently dx. The RN's symptoms are worse than the phys. The phys. was started on 1gm of Solu-medrol IV. The RN on 60mg of prednisone. We are concerned about the inconsistency of the treatment. Can you tell me what the normal starting dose of cortisone is? Answer: Your question involves the use of corticosteroids for the treatment of an acute exacerbation of multiple sclerosis. Often the dose utilized may depend more on the prescribing physician's protocol for treating acute exacerbations of multiple sclerosis. Factors that weigh into this decision may relate to the person's presenting symptomatology and tolerability for corticosteroids. In your friends' situation, I do not have these facts available to me. It is recognized that for significant acute attacks of multiple sclerosis intravenous Solu-Medrol up to I gram per day is an effective trea! tment intervention. However, there are many different regimens involving combinations of IV and oral corticosteroids that have been utilized effectively by different neurologists. However, for significant exacerbations, the standard protocol often involves IV Solu-Medrol. Some groups are now beginning to use high doses of oral steroids up to the equivalent of 1000 mg of IV Solu-Medrol. You may want to discuss the rationale for treating the two people in question differently with the physicians. My personal experience is that if 10 neurologists use steroids they often have 10 different protocols that they follow. S. Murray, M.D., President and Medical Director, MS Center, Denver, CO. 12/98

God* be with you, and send you strength, to over come all obstacles. The worlds a lovely place, when we slow down, and take a moment to view the beauty of the day He gave us. May all your tomorrow's be filled with health, happiness, and the love of God* Please continue to pray for our family's who've lost a loved one, our country the USA! an our friends who live in different country's who support our efforts to halt terrorism in the world. Those who inflict harm on others must be brought to justice, I pray we are wise enough to bring them to justices, without harming innocent individuals like they did in America! Our family's have grieved, the Eagle has shed tears too, I want Peace among all nations. We must be careful what examples we set for our children, they are a reflection of us. Tread softly, speak wisely, LOve more without expecting anything in return. We are capable of reversing our mistakes, admitting them is the first challenge, as much as I love my country the UNITED States of AMERICA! we are not without fault in the past...let us learn from that! CANADA cried for our help they needed beds, their family's were homeless, and freezing we didn't help our sister country. Canada allowed our planes to land during this tragic loss of human life's, thank you Canada, you saved the lives of other USA! citizens SALUTE ~ Peace, truth, and research now, gigi -