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Question:
Does low level chronic infection impact MS in any way? For example: I have an upper molar which was given a root canal over ten years ago following an infection. It has never quite been OK. I have not experienced any pain but it just feels sensitive, and as though it could erupt at any time, but never does. I understand how important tooth and gum care is is for overall health - I get frequent cleanings and floss daily - but this one tooth concerns me. The only solution would be extraction and that is not something I take lightly. Please advise! Answer: Chronic infections do potentially activate the immune system and can make MS worse. I can not advise about a sensitive tooth. Please ask your doctor if this could be trigeminal neuralgia. We have answered a similar question in the past that might be helpful READ MORE Revere Kinkel, MD Director of the UCSD Multiple Sclerosis Program Here is My Question:
I was diagnosed approximately 2 yrs ago at age 51 with RRMS. I had searching for several years for a diagnosis with many symptom. My current EDSS score is between 6.5-7.0, and I go from cane, roller, to wheel chair (manual and motorized) depending on level of function on any given day. In researching my lineage for any family members who might have had MS, I found 7 family members who suffer(ed) with Muscular Dystrophy (MD). This finding included my Cousin, and (5-6) 2nd Cousins on my Fathers side of the family. There is also question if my Aunt might have also suffered from MD, although her spinal issues where never dx'd. I was very curious if there is any data on findings similar to this? Would it be common to find a family with that high of a percentage of MD and my dx of MS? Answer: The Muscular dystrophies (of which there are many different types) are very different diseases and easy to distinguish from Multiple Sclerosis. We know of no link between any of the muscular dystrophies and multiple sclerosis. The fact that you have many family members with MD simply confirms what we already know; the muscular dystrophies are inherited disorders and there are often many affected individuals in a given extended family Although it is usually very easy to distinguish MS from a Muscular dystrophy, I have known of worse diagnostic mistakes. If you are concerned about a mistake in diagnosis why not discuss this with your current doctor. After all it is unusual for a person with your level of disability to be considered relapsing remitting MS. If your current doctor is unable to allay your concerns, why not see a neuromuscular specialist for a second opinion. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Here is My Question:
I have reactive hypoglycemia and have that under control, but after a sub MS relapse and a course of steroids I became intolerant to glucose, I pass out a few days of the week from eating certain foods, have to work out which food caused it and avoid it. When I went for a glucose tolerance test I had a similar reaction shortly after having 25ml of pure glucose, sounded drunk, went hot and heart palpitations and kept drifting in and out of consciousness. They say I have a rare condition that could have been caused by my MS????? Something like the nerve signal to my brain getting confused when my blood sugars raise above 10.5 similar to having a hypo at 2.9, can you explain why this could be caused by MS please???? Answer: The high glucose load probably caused vasodilation and a drop in your blood pressure. I suspect this is unmasking a type of dysautonomia from your MS. It would be a good idea for your doctors to perform some testing of your autonomic nervous system, particularly a tilt table test. This may help them to devise a treatment strategy Good luck Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Here is My Question:
I was diagnosed with ms in 2012 at age 63. I had many symptoms for many years that went undiagnosed, including hearing loss. I had 2 MRI's in the beginning (one with and one without contrast). I have noticed my memory has gotten worse, along with terrible ear noises, confusion (driving and can't remember where I'm going, etc). Should a person have a repeat MRI when noticing new or worsening symptoms? I have also developed this very unusual "smell" (almost strong floral-like). People keep telling me "I told you that" and don't remember at all. It is so frustrating. I also see words wrong, or numbers. No one has ever addressed this or helped me with this. What can I do? Would it be wrong of me to see an MS specialist at the Cleveland Clinic (Ohio)? My neuro is much closer, but there are so few around here. I want to talk to him about that but I don't want to offend him or I don't want him to stop seeing me. I also have confusion and problem solving has become much more difficult, which I used to pride myself on. Any advice would be much appreciated. I am so happy I found this site! Thank you. Answer: I appreciate the frustration you have experienced in your quest to obtain answers to your concerns. If I am correct, you are asking me whether it is a good idea for you to obtain a second opinion from the Cleveland Clinic. I can think of several good reasons for you to obtain a second opinion: 1. You were diagnosed at the age of 63 which is unusual for an MS diagnosis although possible 2. You have unanswered questions as to the cause for a number of your symptoms 3. Some of your symptoms could have more than one explanation I am a big believer in second opinions and would encourage you to discuss this openly with your current doctor. The Cleveland clinic Mellen Center would be an excellent resource for this second opinion. You may also want to read a previous blog I wrote on hearing loss and abnormal smell in MS http://www.healthcarejourney.com/hearing-or-smell-or-taste-changes.html And the cognitive dysfunction page on this site http://www.healthcarejourney.com/cognitive-dysfunction.html Good luck. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Here is My Question:
When I Google "Supplements for MS" - a number of reputable sites pop up with recommendations and explanations for each based on either research or logic. I see multiple suggestions of A, C + E, as well as Queretin, Luten-zeaxanthin and fish oil among others. So why aren't these supplements more widely addressed, explored, and also recommended by MS docs? This is such a common question that we have made this into a 'physician blog'...READ MORE Here is My Question:
My son is 23 and has had MS since he was 22 months old. He developed CIDP along with the MS around age 10. Over the years we have done Avonex, Rebif, Gilenya and now Rebif again due to a 2.4 WBC with positive JC virus. At the beginning from 22 months-5 he was treated with Solumedrol and IVIG for treatment. At 5-15 Avonex. Then when the CIDP hit at 10 we added IVIG treatment in conjunction with the Avonex. Then he switched to Rebif and continued IVIG. Then at around 19 Gilenya with IVIG. During this whole time we would treat with 5 days of solumedrol followed by 5 days of IVIG to treat exacerbations. We had a pediatric neurologist that believed the "if it's not broken you don't fix it". He was doing great with the only thing really bothering him after all these years of treatment was right leg weakness. We then had to transfer to adult neurology and immediately he wanted to change everything because "IVIG is not a MS treatment". So he changed him to Rebif (due to low WBC 2.4 and positive JC virus) which we approved of but we forgot how bad the side effects are of headaches and nausea. He wants him to totally go off the IVIG and is stretching it out but we are already noticing increased leg weakness. We are going to a big MS facility that is respected but we know our son and what works and it is hard to watch him go backwards after all these years of being stable and fighting so hard! At 23 I am seeing the light go out of his eyes and I don't know what to do! The doctor is not listening to us at all and is just following MS protocol. Help please! Answer: I certainly appreciate your dilemma, but I suspect that some of the confusion is shared by your doctors. Let’s look at some facts Fact 1: MS onset at age 22 months is very rare but possible Fact 2: MS and CIDP in the same patient at any age is described in the literature (e.g.. I follow 2 cases) but is really rare Fact 3: Multiply the probability of Fact 1 X Fact 2 and you get a really rare case or an inaccurate diagnosis. For instance, there are pediatric dysmyelinating conditions that cause both peripheral and central nervous system demyelination. These can be confused as MS and/or CIDP because some of the conditions create inflammatory responses that look like MS. But lets assume your son has MS and CIDP with an infantile onset. No one can honestly say they know the correct treatment regimen for his condition, since it is very doubtful they have ever seen a patient like your son. He is indeed a rare young man as I am sure a mother would agree ! In such circumstances applying a pedantic approach to therapy selection is silly. Clearly, your new neurologist will agree that IV Ig is an accepted treatment for CIDP, as there is a good literature to support this treatment approach. Therefore, it is important to ask the new neurologist if he or she thinks the CIDP is active and requires treatment. It may be that he or she simply did not think the CIDP was active enough to warrant treatment at this time. As for the MS, if Gilenya was working I am not sure why the treatment would be stopped. White Blood Counts routinely drop below 2.5 in MS patients on Gilenya and this is not associated with any adverse outcomes. Similarly, there is no evidence that being JC virus antibody positive increases his very small risk of PML while taking Gilenya. We use the JC virus antibody assay to gauge risk of PML only in Tysabri treated patients. To my knowledge there are only two case of PML in Gilenya treated patients that can not be explained by prior therapy with either immunosuppression or Tysabri. That would be defined as a very rare adverse outcome. I would suggest outlining some of these questions for your neurologist and scheduling a specific time to meet and discuss your concerns. I suspect he or she has some very good explanations for what appears to be a confusing recommendation at this time. Good luck Revere Kinkel, MD Director of the UCSD Multiple Sclerosis Program Here is My Question:
I've been on Tysabri approaching 2 years. First JCV test 18 months ago came out positive. Since improvement has been made in testing results, second test came out as .43 six months ago. Just received result of .32 from test one month ago. Should I be seriously considering an alternative , such as Tecfidera or Gilenya? Two year PML window closing soon. Answer: You have a very low index level but a positive JCV antibody result. Very few individuals have developed PML with an index value this low but there is still some uncertainty regarding the long term risk of treatment beyond 4-5 years in people with low index values. What you do about treatment depends on three things: 1. Your tolerance for a very low risk outcome like PML 2. Your disease severity and response to prior therapies 3. Your response to Tysabri for the past 2 years If you feel Tysabri has been good for you and your disease warrants this treatment, it is reasonable to continue on this treatment. There is increasing evidence that increasing the interval between treatments to 8 weeks instead of 4 weeks decreases the risk of PML. This is particularly true of people with low body mass index usually under 60-70 kg in weight. I would suggest discussing your options further with your MS specialist. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program #Tysabri #switchingDMTs Here is My Question:
My daughter was diagnosed with MS last fall at the age of 13. She began treatment with Avonex, and the jury is still out about its effectiveness. My question is about her monthly periods. She had not begun menstruating before or since her diagnosis. Does Avonex play a role in preventing her cycles or even stop them for those patients who have begun menstruating? Answer: Avonex and other interferon treatments are occasionally associated with alterations in menstrual cycles, particularly irregular menses and heavy flow. Primary or secondary ammenorrhea (absence of menses) related to interferon use would be very usual. Steroids and chemotherapies are a far more common cause of ammenorrhea in women with MS. I would suggest discussing this issue with her Primary Care Physician. It may still be early, depending on her overall sexual maturity, but she will eventually be old enough to determine if this is primary or secondary ammenorrhea and the likely cause of this problem. This is the first step in solving this problem. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program |
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