Question:  How is Lyme Disease diagnosed? I had an MRI of my brain only and the doctor said it looks like the others diagnosed with MS.

Answer:  Lyme Disease can be very difficult to diagnose. The disease should at least be considered in anyone residing in or having visited an endemic region during tick season. In most cases there are clear systemic signs of Lyme infection before any neurological symptoms occur. These signs include a characteristic rash called erythema chronicum migraines (ECM) with a spreading red ring with a clear center. Those will or without the rash often develop systemic symptoms 7 to 14 days later including fever, chills, headaches, malaise and joint pain.

Neurological symptoms usually occur in the second stage of Lyme Disease and easiest to identify when there are signs of meningitis, nerve root irritation or cranial nerve palsies, all uncommon in MS. But Lyme can be elusive and less commonly will create neurological symptoms difficult to separate from MS.

The diagnosis of Lyme is never made by MRI; instead the diagnosis requires the correct demographics, clinical history and serological studies of both the blood and spinal fluid. When in doubt we will often treat individuals with oral doxycycline. The duration of required therapy is unclear but there is little evidence to support more than 2-3 weeks of therapy, depending on the circumstances. The main controversy with lyme disease is whether post treatment Lyme or chronic Lyme Disease exists. This has been written about extensively and I will leave that to other authors.

Rip Kinkel

Question:  I am a fan of Beachbody's product Shakeology. I am also a Copaxone user. My issue is that the Shakeology products have the ingredient maca in them. I have used maca in the past but the issue I was running into is that when I would give myself Copaxone injections, I would "bleed out" when I was giving myself the actual injection and I wasn't getting the full amount of Copaxone. In response to this, I had a "mini relapse" and had to go into the hospital for Solumedrol treatment. Is there a way that I can get around this? I really want to take this product but it seems my treatment option is interfering with that. Should I consider Gilenya or another oral treatment instead? Thank you.


Answer:  Thanks for your question regarding Maca. I was not familiar with this plant so I had to do a little research. From what I can tell there is little known about the side effects and no mention of bleeding except for some reports of menstrual spotting. Of course, if this has been a reproducible problem for you, Maca may be the cause.

That said, it seems like an alternative to Copaxone may be in order for either reason; it makes little difference if the severe relapse was caused by copaxone being ineffective in your case or copaxone leaking out after the injection; in either case it was not working as desired. By the way it is far more likely that the relapse occurred because copaxone is only partially effective in your case.

Why not discuss alternatives treatments with your neurologist? Without knowing the details of your case, it is hard to make any specific recommendations.

-Dr. Kinkel

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.

A colleague of mine in Florida, Dan Kanter, wrote a nice piece on MS and migraine for the Multiple Sclerosis Foundation (MSF) which I have attached for you to read (http://www.msfocus.org/article-details.aspx?articleID=868). There is evidence that migraine and other headache disorders are more common in MS patients than in healthy people without MS. It is certainly a common problem that we encounter almost daily in our MS clinics. There are some interesting similarities between the two conditions:

1. They both are more common in young woman
2. They are both associated with latitude (more common the further one resides from the equator) and show associations with vitamin D deficiency
3. They have both been associated with meningeal inflammatory responses
4. Both conditions may show "white spots" on an MRI scan
   

So what is the association between migraine and MS? This remains unclear. Migraine is so common (30-40 million people in the US) that it is not surprising that we see it in our MS patients by pure chance. Perhaps the meningeal inflammation that occurs in MS is capable of triggering migraine in susceptible patients. This is a testable hypothesis that we are pursuing now.

What is important is to make sure the headaches are migrainous and manage them appropriately. Many drugs can increase migraines in MS patients, particularly interferons and Gilenya. Migraines are one of the most common conditions managed by all neurologists so a good neurologist should be able to help you manage this problem.

Dr. Kinkle

Here is My Question:
My daughter just had a baby and we have had the umbilical cord tissue and cord blood frozen. How or where do we go to find out if a transfusion can be done on me? Is it still experimental or can it be done at a specialized hospital? Do they do them in the US? I have RRMS.

Answer:  Cord blood is rich in bone marrow derived stem cells. These cells are not particularly useful as a source of neural stem cells (the kind required to regenerate the nervous system of MS patients). They are primarily used to treat diseases that affect cells of bone marrow lineage like leukemia and lymphoma. “Stem Cell” transplantation for MS using any source of stem cells is still very experimental. This field is not well regulated and private companies in the US and elsewhere are overhyping therapies and making unsubstantiated claims to make a lot of money off of patient fears.
I recommend going to the following website if you are interested in stem cell transplantation to learn more and find out the important questions to ask before you consider any of these therapies.
http://www.closerlookatstemcells.org

Dr. Kinkel

Question:  My PCP provider says I'm depressed. I've been living with MS for 18 yrs. I know what my body is going through. Is their any help for me? Am I too old to correct anything?

Answer: It is never too old to correct anything, although our options and goals do change as we get older. Depression is a common response to chronic illness and may even be an intrinsic part of MS. I have written several blogs on this subject including one on self efficacy (Please read http://www.healthcarejourney.com/4/post/2014/01/self-efficacy-and-multiple-sclerosis.html)

It is not uncommon for people with MS to receive a diagnosis of depression followed by a prescription for an anti depressant; but the cure can not stop at this point. You must take an active role in your healthcare; effective management of depression requires an exercise program, increased socialization, cognitive behavioral therapy and most importantly a sense that you have some control over your path. Talk about this with your doctor and see if he or she can help you find resources to help with your journey.

Dr. Kinkel

Question:  I'm having an evil MS hug...shortness of breath and severe back pain. It's been going on for several days. Should I go to the ER? Can they help?

Answer:  Severe discomfort or pain requires prompt evaluation by someone who knows you and is able to evaluate you. While this may be related to your MS, as you’ve indicated, it may also be related to other more severe problems. Please call your physician promptly for further advice.

Dr. Kinkel

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.

I hate to sound like a broken record or an advertisement, but I’ve recommended the Nintendo Wii Fit system for years. Although not an 'app', the most recent versions have programs for Balance, Strength training, Yoga, Aerobics and now something called training plus.

This is a great system that helps you set goals and track your response. It is also fun and best performed as a social activity with family members. Ask your physician or physical therapist about it.

-Dr. Kinkel

I am currently taking atorvastatin for cholesterol and was wondering if I should switch to simvastatin, considering the latest trials for those of us with SPMS and statins. Is there a difference in the medications?

The answer is no; both atorvastatin (also called Lipitor) and simvastatin (also called Zocor) have been studied in different populations of MS patients with mixed results. Neither statin has definitely been shown to be effective in any MS population, to say nothing about one being more effective than the other. Until phase III studies demonstrate a benefit, it is far too early to recommend any statin therapy to treat MS alone. Those on statin therapy for other reasons (elevated cholesterol, cardiovascular risk) should feel confident in continuing their current statin therapy, if it is working and well tolerated.

--Dr. Kinkel

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.

Q. "I was wondering if anyone had any knowledge of a supplement called Protandim which supposedly reduces oxidative stress and if anyone is using this for MS as a stand alone therapy or in conjunction with a traditional MS drug - I was asked about this recently and I do not have enough info to answer this correctly - thoughts? Thanks."

Answer:  Protandim is a mixture of 5 herbal ingredients, which are strong activators of the Nrf2 anti-oxidant pathway. The company that makes this product has been promoting it heavily for MS since one of the potential effects of Tecfidera (dimethylfumarate), a recently approved treatment for MS, is activation of the Nrf2 pathway. It should be mentioned that there are many naturally occuring activators of the Nrf2 pathway and there is no good evidence that this is the main mechanism of action of Tecfidera. Unfortunately, there are no controlled clinical studies to support the claims of efficacy for protandim in MS and these studies are not even required by the FDA since the product is an herbal supplement. MS patients interested in supplementing their current therapeutic approach to MS may want to consider supplementation with tumeric, milk thistle and green tea, the main ingredients of Protandim. This would be a rationale, low cost approach to supplementation.

Question:  I am very frustrated with my need to get up to urinate at least 3 times a night sometimes after wetting the bed.  I currently take oxybutynin XL 15mg, catheterize before bedtime and drink no caffeinated beverages. This only cut me down from 6 times a night to 3 times a night and I am exhausted during the day. Help please?

Answer:  This is a frustrating problem and there are several potential solutions. First, it would be useful to know the rest of your history, but I am guessing you experience significant urinary frequency, urgency, hesitancy and urge incontinence during the day as well. The first thing you should do, if not done already, is see a urologist, preferably one with expertise in neurogenic disorders of the bladder and MS. Your constellation of symptoms and lack of response to therapy suggests a low capacity bladder, possibly under high pressure, with overactivity of urinary sphincter that helps control the release of urine. This type of problem often does not respond adequately to standard treatment with high doses of oxybutynin (called anti-muscarinic treatment) or even self catheterization. If this is the problem, effective treatment often involves botox injections into the bladder neck or even neuromodulation with the InterStim device made by Medtronics. As a temporizing measure, your physician may consider prescribing DDAVP (desmopressin) at bedtime to help decrease the production of urine, but this treatment should not replace a thorough evaluation by a urologist. To learn more about urination and MS, you might want to read this http://www.healthcarejourney.com/10/post/2014/03/the-idiots-guide-to-urination-and-ms.html

Good luck.

--Dr. Rip Kinkel

Q:  I have either PPMS or SPMS, and my opthalmologist just checked my eyes and said that I have pale optic nerves. This is something new, since I get my eyes checked by this retinal specialist every year. Several years before I was diagnosed with MS, I had a bout of tunnel vision that lasted for a few months, but am not sure if that was a relapse. Could these two things relate? Am I in danger of losing my vision? What do I do?

A:  Optic nerve pallor is a finding on examination with many causes. The normal optic disc has a pink coloration from the small blood vessels supplying the nerve head and adjacent retina. When there is permanent damage to the nerve fibers traveling through the disc there is also a loss of these small blood vessels resulting in a characteristic white or pale coloration to some or all of the optic nerve head. By the way this is the only part of your central nervous system that we can actually see without opening your skull, so it is an important part of the examination.

Optic nerve pallor can be difficult to detect early, particularly when the process involves both eyes. At this stage it usually requires special equipment to detect. Eventually, the change in coloration becomes obvious even when when involving both eyes. Optic nerve pallor is a sign of a disease not a problem by itself. It is not unusual for MS patients to have significant optic nerve atrophy but preserved visual acuity (the ability to see objects of smaller and smaller size with maximal contrast). However, there is usually a loss of low contrast vision, especially in low light situations, and some alteration of color vision (reds appear dull). Special testing often reveals areas in your field of vision that are worse than others called a visual field defect. While it is possible for a person with MS to eventually become blind from progressive optic atrophy this is less common than one would expect.

There are other causes of optic atrophy, even in a patient with known multiple sclerosis, and an ophthalmologist is the correct person to see if there is anything atypical about the optic atrophy. Before MRI scans were available, optic nerve atrophy was considered one of the diagnostic hallmarks of MS; in fact if you saw a person with longstanding MS without optic nerve pallor, physicians were taught to re consider the diagnosis of MS. There is no specific treatment to prevent further optic nerve atrophy if it is caused by multiple sclerosis. There are some other treatable causes such as smoking and B vitamin deficiencies. It is essential to quit smoking as soon as possible and take a multivitamin daily. You neurologist can talk to you about other possible causes but ask him or her to focus on the treatable conditions.

--Dr. Kinkel

Trimesta is a branded formulation of Estriol, an estrogen produced in large quantities during pregnancy. It is believed that production of Estriol during pregnancy may be one reason for the decrease in MS disease activity noted in MS patients during the later stages of pregnancy. There are preliminary studies suggesting possible benefits of Estriol in MS, but these studies are far from conclusive. Estriol is not currently marketed for any indication in the united states so it is not even available off label. I am not aware of any phase III trials in progress so the path forward for approval of Estriol in the United States is unclear at this time.

--Dr. Kinkel

Question:  I'm new to Tecfidera and have been on it 5 weeks. I seem to be managing my side effects well but it is making me hot. I am taking an aspirin in the morning and it is helping with the flushing but I'm still hot all time, especially at night. How do I regulate my body temperature?

Answer:  The first thing you should do if feeling hot is determine if you actually have a temperature. If not then you should see if other medications you are taking could be contributing; these other medications could include anticholinergic drugs like oxybutynin (Ditropan), detrol, vesicle and toviaz used to treat bladder control issues. You may not be able to get rid of them but you may be able to decrease the dose. All of these drugs decrease your ability to sweat and can make you feel hot. If you are not able to get rid of any contributing medications and still feeling hot or flushing, ask your physician about taking a baby aspirin in the morning and another at night if necessary. If this doesn’t work, ask about taking a regular dose of aspirin (325 mg) in the morning and at night. I would suggest taking enteric coated aspirin like ecotrin to avoid hurting your stomach. Hopefully, you will be able to get rid of the aspirin or take just one aspirin after 3 months. Good luck and make sure you check in with your doctors about this problem.

--Dr. Kinkel

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.

Multiple Sclerosis with a totally normal MRI is unusual in this day and age with the technology available. There are several ways that a person can have MS with a “normal” MRI:
1. The MRI is technically inadequate
2. The MRI isn’t really normal; the doctor reading the MRI is wrong. Often what the doctor really means when they say it is normal is that the findings are not diagnostic of MS
3. The MS is confined to the spinal cord, optic nerves, or other regions difficult to image
4. The MS is atypical or another condition all together

Other tests may be useful if the MRI is not diagnostic of MS. Depending on the circumstances it is sometimes best to observe how a person does for a while before plowing into further testing, but this may not be possible if the person perceives their condition is worsening. Before plowing into more testing, it is also useful to get a second opinion. Hope this helps

--Dr. Kinkel

Question: I was diagnosed approximately seven years ago by my neurologist with 'primary progressive'. In the years since then in much of my reading I see reference to 'secondary progressive' My question is: Does 'Primary Progressive' evolve into 'Secondary' or are they two separate types?

Answer:  This is a good question; the easy answer is that primary and secondary progressive are meant to be different disease types, but this may not be entirely true.

Years ago a bunch of MS experts sat around a table and came up with clinical definitions of MS disease types. The four types agreed upon were relapsing remitting, secondary progressive, primary progressive and progressive relapsing. The reason for defining disease types was as follows:

1. Different MS researchers were using different definitions and names of disease types in their publications making it difficult for others to duplicate or even understand their results.
2. No one knew how to separate MS disease types based on pathology, imaging or a blood test (we still don’t) but we could separate MS based on different clinical behaviors that had been observed for over 100 years. It was felt that this would be a good place to start for identifying causation and mechanism of disease.
   

So this clinical classification scheme was developed and applied to all clinical research studies to characterize patient populations.

1. Relapsing remitting MS is the most common and occurs in about 85 % of patients at onset and during the early years of the disease.  This type is characterized by abrupt onset of symptoms and worsening function (called a relapse or exacerbation) reaching it’s worst point within 1-2 weeks in most patients before spontaneously remitting (recovering), although recovery is often incomplete.  This phase of the disease can occur once (a single relapse) or go on for 10-20 years. If people worsen during this phase of the disease the worsening is presumed to be due to incomplete recovery from a relapse, although after many years it is often hard to know if this is the entire cause of worsening or if the person is now becoming secondary progressive (see # 2).
2. Secondary Progressive MS ALWAYS FOLLOWS A RELAPSING REMITTING COURSE, by definition. In other words you can not be classified as secondary progressive unless you were once relapsing remitting or experienced at least one relapse. Approximately 80 % of relapsing remitting patients become Secondary progressive within 25 years (average is 10-15 years). The rest (20%) remain relapsing or more commonly just stable after many years. By definition patients have either no relapses or rare relapses during this phase of the disease but they all show slow progression of problems not associated with the abrupt changes that characterize relapses. The worsening is usually measured over intervals of 1-2 years. 
3. Primary Progressive MS tends to involve older individuals and is marked by a slow progressive course from onset WITHOUT any relapses or exacerbations (except those caused by infections). The most common presentation is an individual with a slowly developing problem walking that takes 12 to 24 months for their doctors to figure out. This type of MS occurs in about 10-15 % of MS patients. Interestingly, this form tends to involve males and females evenly unlike relapsing MS which is more common in females. The average age of diagnosis is over 40 unlike the younger age of onset with relapsing remitting MS. In fact the age of onset of secondary progressive and primary progressive MS seems to be about the same. This and some other characteristics has led to the hypothesis that the mechanism of injury (and therefore treatment) is the same for primary and secondary progressive MS; the difference may be that those individuals with primary progressive MS do not experience the inflammatory reactions in the brain that cause relapses and therefore the disease goes undetected for many years.
4. Progressive relapsing is the rarest form in the classification scheme. This is defined as a person who is progressive from onset but then suddenly experiences a relapse. Relapses tend to be rare in this type and it is more of a progressive disease. The fact that cases like this exist lends credence to the notion that all these disease types overlap and are more accurately displayed along a spectrum instead of as discrete entities.
   

What we really need is a way to differentiate disease types based on pathology and mechanism of injury so we can use this information to apply the correct treatment to the correct person.
Hope this helps


--Dr. Kinkel

Question:  I want to do everything I can to increase my chances of being as well as I can with MS. I take medications prescribed by my neurologist, exercise as much as I can (4x40 minutes/week), eat low fat & low sugar, tons of fish, fruit and vegetables, take vitamin D and meditate. Is there anything more I should do?

Answer:  All of the things you are doing to treat your MS will potentially benefit you in the long run, but there is one thing you failed to mention; are you happy? Happiness is an elusive concept but extremely important to your relationships, health and longevity. The ability to be happy comes naturally to some and requires much more work for others; it is not related to wealth, once basic needs are met, or even to the presence of a normal state of health. And yet achieving happiness and contentment will do as much for your health as most other medical remedies. As a primer I would recommend the following. First, rent the 2011 documentary movie Happy to give you some things to think about. If you prefer a really good drama that explores the search for happiness in a sometimes cruel world, I would also recommend, The Unbearable Lightness of Being (beware of adult content). Last but not least, pick up Daniel Gilbert’s book called, Stumbling on Happiness. It is really a must read. And no matter what you are thinking at this moment, do not dismiss the importance of working on happiness as a key treatment for your MS. Good luck.

--Dr. Kinkel

Spasms in the legs often do not respond to the same dose of medication used to treat overall spasticity even though they are related phenomenon. If the spasms do not respond to higher doses of Baclofen, tizanidine, gabapentin, Lyrica or a more standard muscle relaxer or if these doses cause too many side effects, we often add a benzodiazepine like diazepam or clonazepam at bedtime. This usually does the job for most people since cramps and spasms are more common at night while lying supine.

Cramps are a slightly different phenomenon causes by muscle irritability and will sometimes respond to magnesium oxide supplements (250 to 500 mg). But beware, higher doses of magnesium oxide can cause loose stools.

The easy answer to your question is no, I do not think that dietary manipulation is an effective way to manage your MS. But I would give the same response if asked if medications were an effective way to manage Multiple Sclerosis. MS, like many chronic conditions, can not be managed with any single remedy since the goals of treatment are diverse. I suppose if someone discovered a cure for the condition, you would only need to apply this cure and other treatments would lose their significance. Until this time any effective management strategy must reduce inflammatory responses in the central nervous system, protect cells from ongoing stress and neurodegeneration and assist in remyelination and regeneration. There is no dietary manipulation able to accomplish any of these goals by itself although dietary manipulation may play a role in the treatment process. As to which diet is most effective, no one knows the answer.

-Dr. Kinkel