Here is My Question:
I was diagnosed with MS about 18 months ago and have been undergoing treatment. Since my diagnosis I have been more physically active engaging in circuit training, obstacle course racing and running. Most recently I joined a 3 month program to train for an (optional) amateur boxing match (3, 2 minute rounds). During the training we will be sparring (with appropriate head and mouth gear) using 16 oz gloves for extra protection. My question, is boxing advisable given that I WILL receive blows to the head during the process? I have read mixed articles about the correlation with "head trauma" and MS. I imagine that "head trauma" would be a liberal representation of what I will be undergoing, but wanted to check nonetheless. Please advise.
It is absolutely great that you have been so active since your diagnosis, and I applaud you. Keep it up, all except the boxing. Considering the damage that repeated blows to the head can inflict on a normal brain, this activity should really be avoided in people with MS and most other disorders of the brain or spinal cord. I can give you many reasons for this opinion, but I will spare you the details. Incidental head trauma can not be avoided in life, but you can certainly avoid doing it to yourself on purpose.
Rip Kinkel, MD
I was reminded today at our weekly department grand rounds of an extremely important topic that MS specialists often forget; the benefits of folic acid supplementation in pregnancy age women. We spend so much time discussing the use of disease modifying therapies in pregnancy that we often forget about other equally common and well-known risks. It has been known for decades that folic acid supplementation in doses above 0.4 mg per day reduces the risk of neural tube defects such as spina bifida. What women often do not know is that by the time their pregnancy is confirmed, it is often too late to start this supplementation, since neural tube closure is an early event in embryogenesis (first 25 days). More importantly, at least 40 % of pregnancies are not planned in advance.
Why is this topic so important in woman of childbearing ages with MS? Well, one of the most common class of medications used to treat MS related symptoms are the anti-epileptic drugs (AEDs) such as gabapentin, valproic acid, carbamazepine, lamotrigine, phenytoin, primidone and topiramate. We use these drugs to treat MS related pain syndromes, migraine headaches, mood disorders and even the main disorder for which they were developed, seizures. This class of medication, particularly valproic acid, has been associated with a number of major congenital malformations (MCM) and, more recently, disorders affecting behavior and learning including autism spectrum disorders. The risk is even higher with use of more than one of these medications at a time. While most of the data supporting the association of certain AEDs with birth defects come from Epilepsy Pregnancy Registries, there is little reason to believe that this data would not apply to women using these medications for other indications.
The reason for the increased risk of birth defects is clear with certain enzyme inducting AEDs such as phenytoin, carbamazepine and the barbiturates (primidone and phenobarbital), all of which cause a reduction in folic acid levels. For valproic acid it has been suggested that the drug interferes with folic acid metabolism. Other more recently introduced AEDs such as gabapentin, lamotrigine, oxcarbazepine and zonisamide have no significant effect on folic acid metabolism and the data on MCM is mixed. Yet most epilepsy specialists recommend folic acid supplementation in all women taking these drugs.
So what should you do with this information if you are (a woman) women of childbearing potential regardless of whether you are on birth control? (Birth control can fail)
While the use of folic acid supplementation will not guarantee a child without birth defects, you can at least know you are doing something to reduce this risk. If you have daughters or grandchildren of childbearing ages, please pass this information along.
-- Rip Kinkel, MD
Here is My Question:
I have been taking Ditropan for bladder problems for several years until fairly recently at a dose of 5mg 1 to 2 times per day. Relapses in the past few months have meant that I now take 5mg 3 times per day, with limited positive results.
However, I have very recently been told that Ditropan's effect is very limited if it is taken with food, and that it should be taken either 1 hour prior to, or 2 hours after food. The comment was also made that as a dry mouth is a common side effect, "if you don't have a dry mouth, it's probably not working very effectively." I am quite annoyed at not being told this, and have checked the drug information sheet provided by the pharmacy, which makes no mention of taking it on an empty stomach. Is this true?
Also, I have found elsewhere that one of the contra-indications to taking this is having a hiatus hernia, which I have. This has never been discussed with me by my neurologist, gastroenterologist or general practitioner. So what should I do?
It sounds like your MS has been active recently and has influenced the complex micturition reflex (you can read more about this reflex in Dr. Kinkel’s blog here: http://www.healthcarejourney.com/urinationbowel-problems.html). Ditropan treats overactive bladder (detrusor) function. However, there is more to the story than the detrusor for micturition.
I’d suggest discussing this with your neurologist and a separate urological consultation may be needed to address the recent changes in your bladder function (ie, 1- to identify any other factors at play, and 2- develop a treatment strategy specific to your current bladder needs). Keep in mind that sometimes higher doses of Ditropan may be needed (up to 30mg/day)—although I do not recommend doing this on your own, but with the close observation of your treating physician (if it makes sense to do so in your specific situation).
To answer your specific questions about Ditropan:
Hope this helps.
-A. Scott Nielson, MD, MMSc, Virginia Mason
Q: Is there some kind of legal defense charter or any good attorneys willing to work pro bono? My employer has practically terminated me because of my MS. During my last flare my boss actually called my hospital room and accused me of faking it and demanded I stop faking it and get back to work. I would try to take this up with my HR department but they're in Texas and my boss is in a sexual relationship with the individual from HR that would handle this situation. Are there any good attorneys that would be willing to take a case pro bono and help me get my career of 14 years back? Thank you in advance for any assistance you can give me on this matter.
A: We are very sorry to hear that this is happening to you. It has taken a while to get back to you because we have been asking various people for information. We don't know what state you live in (do you live in TX as well, or is just the HR department there?), and would need to know that in terms of finding someone in your area that might be able to help. However, we are not legal experts so our ability to help is limited. In the meantime, you can utilize these resources...the ADA (http://askjan.org/JANonDemand.htm) and the EEOC (http://www.eeoc.gov/) and they might be able to provide guidance. We have included a video about the American Disabiities Act below.
Has anyone reading this gone through a similar situation and if so, would you be able to share any resources that helped you?
Here is a link to the NMSS employment page that has a list of resources that might help as well:
We have received two questions regarding clinical trials that we will answer with one answer:
Q1: What clinical trials are currently going on?
Q2: Hello, my wife has secondary progressive multiple sclerosis. She had relapsing MS but it increased. I live in Washington state. Could you give me any specifics on clinical trials at Virginia Mason. Also, I've been reading about stem cell research and trials, do you know of any trials that could benefit my wife and I please remember I live in Washington state. My wife can barely stand and walk has 3 lesions in neck and needs help, I would appreciate it if you could get back to me with help. Thank You.
Answer for Q1: Anyone interested in clinical trials should read Deborah Backus' blog to find out information about clinical trials and how to find out if any are being conducted in your area:
Answer for Q2:
We contacted Virginia Mason, and Suzanne Vogt is the person you would want to speak with about their clinical trials. Suzanne's contact information is below:
Benaroya Research Institute at Virginia Mason
1100 Ninth Avenue, D4-CRP | Seattle, WA 98101-2795
p 206.342.6514 | CRP 206.342.6524 | f 206.625.7254
BenaroyaResearch.org | VirginiaMason.org
It doesn't appear that any stem cell trials are being conducted in Washington (these are primarily being done in Cleveland and New York currently). However, you can speak with your wife's physician and they might know more. Hope this helps.
Here is My Question:
With all of this concern for children and the Norovirus, it is safe to assume that adults are at a minimal risk for catching the disease? I am concerned with my adult daughter's suppressed immune system and her risks of contracting the virus. When is the time to be concerned about mild cold symptoms being more serious?
Norovirus does not cause an upper respiratory tract illness. Norovirus is the most common cause of food borne gastrointestinal illness causing nausea vomiting, abdominal cramping and diarrhea. Most of the outbreaks that have been reported lately have occurred on cruise ships. This virus is an equal opportunity offender affecting children and adults of all ages. The best thing you can do to avoid this virus is not eat contaminated food, wash and disinfect your hands frequently and hope you can avoid an outbreak in a confined area like a cruise ship
--Rip Kinkel, MD
Thank you for your explanation about Dr Gary Cutter's use of constraint induced movement therapy. As I have PPMS I found this treatment option quite exciting.
I read your explanation about constraining arm movement. As my weakest area is my left leg and left foot (drop foot), could you please explain the details of how I would apply constraint induced movement therapy to my leg?
Thank you for your answer as I would like to attempt this approach to assist my walking.
Constraint induced movement therapy (CIMT) of the lower extremities doesn’t actually use physical restraint of a less impaired limb, as is the case with upper extremity CIMT therapy; this would not be possible since you require both limbs for ambulation. Instead an individual is trained to avoid maladaptive postures and movements with persistence of the training effect at home through behavior modification procedures, diaries and a contract with the therapist. In short you require a trained physical therapist to succeed, but to be honest many good physical therapists already use these techniques to achieve better outcomes.
By the way you had me laughing when you mentioned, "Dr Gary Cutter’s study on CIMT"; Gary is a brilliant guy but he is a statistician not a rehabilitation specialist. The other authors from UAB performed the study. I’ve posted the article if you would like to take it to your physical therapist for further discussion and implementation into your rehabilitation program.
Here is My Question:
Could Linzess be a good solution for constipation?
Linzess is new to me and I had to look this up. It is FDA approved for constipation of unknown cause/irritable bowel syndrome. It apparently works by stimulating the secretion of chloride and bicarbonate into the intestines which leads to more fluid in and faster movement of stool. It is a prescription and is obtained from a physician after other causes of constipation are ruled out. It may be helpful for your situation, but should be discussed with your prescribing physician. For more conservative (non-prescription) options, please see my blog on gastrointestinal complaints in MS (Read Blog).
Q: Can I take Difen Flex?
A: We have had multiple questions about Difen Flex. CLICK HERE for the answer
Here is My Question:
What do you think about this?
I think we can wait until this is peer reviewed by autonomic specialists AND multiple controlled trials are done with confirmatory results; There is a significant literature on transvascular (venous and arterial approaches) stimulation or modulation, usually through pacing or ablation, of the autonomic nervous system for arrhythmias and even refractory hypertension; but one would not expect any prolonged effects with balloon dilation of a vein. One could argue that this procedure represents nothing more than the "liberation procedure" searching for a mechanism of action.
This happens all the time in medicine, and there is nothing wrong with this approach; remember interferons were first used in MS for their proposed anti-viral effects. But no one would have pursued these studies further without preliminary controlled studies showing a benefit. Uncontrolled studies with subjective outcomes rarely provide any significant evidence of benefit.
This procedure is similar to the liberation procedure advocated for CCSVI and we know the outcome of that story.
-Rip Kinkel, MD
Here is My Question:
I have been on Tysabri for 2 years (as of December) and I am JCV positive. My neurologist has told me that he recommends changing drugs in December. I have also been told that I have SPMS. My mobility and fatigue have declined in the last few years but I have no new lesions. What do you feel is the best drug to take now?
Recommending an individual drug or treatment requires intimate knowledge of your personal characteristics as they pertain to your MS and this knowledge can only be gained, at a minimum, through the medical consultation process. At present we do not provide medical consultation.
We can provide general information and broad recommendations that reflect our approach to decision making but the individual decision must be made by you in consultation with your MS specialist.
Here is a blog about what to consider when selecting a disease modfying therapy you might want to read. CLICK HERE
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego
200 West Arbor Dr
Medical Offices North MC 8687
San Diego, CA 92103
Here is My Question:
My neurologist thinks I should consider changing MS therapies – from Tysabri to Tecfidera. In terms of MS therapies, I have been through Copaxone, an interferon ß (specifically Rebif) and am currently on Tysabri. I think most of the disability I now experience developed while I was on Rebif, so it did nothing for me. I have been on Tysabri for 4.5 years (5 years in Jan.). While my MRIs (always 3T every 6 months; now every 4 months) have been stable during this period, I am JC virus positive and my index values (only monitored every 6 months over the past year) have remained 1.0. I am told that given the numbers listed above, if I remain on Tysabri my chance of developing PML are roughly 1/140. Her experience with Tecfidera is that most patients initially experience some side effects (diarrhea, flushing) but in roughly 75% of cases, these go away with time. But, in 25% of the patients, the just don’t like how they respond to Tecfidera and go back on what they were on before, or in my case, Tysabri. I am a biomedical scientist and like the idea that we know fairly precisely how Tysabri works and have no real idea how Tecfidera works. I think I should remain on Tysabri for another year (with MRIs every 4 months and JC indexes every 6 months) and revisit this question when there might be more information and/or another option (e.g., daclizumab) rather than Tecfidera. What do you think? Any information greatly appreciated.
If you look at the table that I published on a prior blog CLICK HERE, you will see the following probabilities for PML with different JCV antibody index values for patients on therapy for at least 49 to 72 months:
Index < 0.9 : risk 1 in 2500
Index < 1.1; risk 1 in 1429
Index < 1.3: risk 1 in 833
Index < 1.5: risk 1 in 769
Index > 1.5; risk 1 in 118
Given the wide fluctuation in risk of PML with relatively small changes in antibody index, I would be cautious in how you interpret these values. I basically lump everyone at or above an index of 1.0 in the same category until we have more data and longer follow-up. I am told that this table, which was based on 51 cases of PML, has been updated to reflect data on over 70 cases and the probabilities change very little with this new data. I will update the website with this new data when I see it
I guess the points I would make are the following:
I hope this helps
Here is My Question:
I was diagnosed in 2013 with optic neuritis and RRMS a after a 3 +yr search. During the past 17 months I have had 2-3 additional relapses with additional issues: bilateral pulmonary embolisms, stomach cellulitis, sepsis, and MRSA that have all contributed to a steady progression of disability in walking and hands/arms. If my MRIs are showing only a slight progression, but my disability is greatly increased, is it indicating that I am moving into the next stage from RRMS? I have been on Aubagio for 15 months.
MS patients are very sensitive to worsening of baseline function due to systemic problems. It is very likely that due to the unfortunate development of other problems (bilateral pulmonary embolism, sepsis, etc) your overall performance and neurological function appears to be deteriorating. Most of the time, there is a dissociation between the way you feel and perform and the way the MRI looks, particularly when the underlying problem is due to reconditioning. I recommend you try to engage in physical therapy as soon as your doctor allows you, and close follow up with your neurologist with frequent MRIs (every 6 to 12 months) to identify progression earlier. It is also a good time to discuss with your doctor if Aubagio is the best therapy for you at this point.
-Augusto Miravalle, MD
PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
Here is My Question:
Does amantadine (Symmetrel) help with fatigue? I read that it does and you can take it with your MS medications, or is there an herbal med that will help with that? I have become so fatigued it is causing problems in my everyday life. Also is chlordiazepoxide (Librium) better for anxiety than klonopin?
Amantadine has been shown to be helpful in treating mild MS-related fatigue, but how it actually does that is not clear. It was originally developed as a prophylactic agent for the flu decades ago (but not really used for that anymore). Fatigue due to MS is the most reported (and disabling) feature of MS. There are many other factors that can add to fatigue (heat, sleep problems, depression, and many medications used to treat symptoms of MS including those for anxiety that you mention in your question) and should be reviewed with your doctor. Amantadine is a good place to start (for treatment of fatigue due to MS), but if it is not sufficient, there are other stimulant options that your doctor can discuss with you (modafinil, methylphenidate, etc).
I do not have an opinion regarding the relative effectiveness of different anxiety medications (it's hard to know what is best for a certain individual, and requires a trial/experience approach with a doctor who is following you closely). Hope this helps.
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.