Here is My Question:
I have 5 members in my family including my sibling that have been diagnosed with MS, I have several symptoms and they have gotten worse over the past 5 years such as, painful, severe, frequent muscle spasms (no less than 10 per hour that jump all over my body, similar to what you would see with an ALS patient), electric or crawling feeling through my body, memory loss/confusion, numbness and tingling in all extremities that come and go, loss of balance, double vision, troubles swallowing, small nerve fiber neuropathy, difficulty speaking and remembering words. My EMG studies have come back abnormal and 2 1/2 years ago my MRI of neck and brain as well as spinal tap came back normal. Is it possible to have lesions lower in the spine that would not have been caught on the brain and neck MRI that could be diagnosed as MS even with a normal spinal tap?

Answer:
People with MS do not experience small fiber neuropathies or any form of sensory neuropathy. Remember, MS is a disease of the central nervous system and neuropathies, by definition, are diseases of the peripheral nervous system. It is certainly possible to have "lesions" in the thoracic spinal cord and not see lesions in the brain or cervical spinal cord in people with MS but it would be rare after 5 years of symptoms

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
My first relapse was after the first insert of a copper IUD. My MRI showed results that suggested I may have had MS for quite some time and not known about it (no symptoms). Is it possible the copper IUD caused my relapse? It was literally within days after putting it in.

Answer:
The Guidelines for use of medical contraceptives in MS published in 2016 lists copper and hormonal IUDs as safe and effective in all categories of women with MS. There are no studies showing an increased risk of relapses with copper IUDs. There is one study by the New York State Consortium of MS Centers that even suggested that copper IUDs delayed the onset of MS symptoms. This later study would require larger confirmatory studies before we would consider the information validated.

Hope this information helps you.

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
Hello. I am a 24 year old female. I was diagnosed with MS in 2013. I just found out from my new Neuro that my JCV level is 1.45. I also have lesions on my brain and a C5 lesion in my spinal cord. I used Gilenya a few years ago but stopped due to personal reasons. My Neuro wants me to start taking Ocrevus ASAP but I am concerned because of me testing JCV positive. I fear I will develop PML.

Answer:
Three MS disease modifying therapies have been directly linked to PML. The highest risk is associated with Tysabri. The DMT with the second highest risk is Fingolimod (Gilenya) followed by Tecfidera. To my knowledge there has only been one de novo case of PML in an elderly (over 70 year old) MS patient on Ocrevus. 

As I have discussed previously, we have good mitigation strategies for the prevention of PML with natalizumab and tecfidera. For all DMTs associated with PML, I personally feel one of best mitigation strategies is to avoid using them in elderly patients (over 65). This certainly applies to the use of Ocrevus.

​Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego


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.

Here is My Question:
For the past 7 years I've been on Tysabri every 4 weeks but my neurologist decided to change it to 6 weekly infusions much to my disgust 😥 and I don't feel the same. I'm more tired and I'm weaker and my head is constantly sore. HELP

Answer:
There are several good reasons to switch an individual on Tysabri to every 6 week infusions after a year or more of stability on every 4 week infusions. These reasons include the following:

1. No prior history of chemotherapy or immunosuppression with a JCV index > 0.9 (some argue even those with lower index values are at too high a risk of PML), especially if older age (> 55) and lightweight (< 60 Kg) 
2. A prior history of chemotherapy or immunosuppression and any level positive JCV index

If you are in a risk group for PML (see above), you understand these risks and are willing to take these risks, I suggest you discuss your concerns directly with your neurologist and ask to be switched back to every 4 week infusions. Most of us have not experienced any significant problems switching people from every 4 week to every 6 week infusions. That being said, this is still anecdotal information. There is a controlled clinical trial underway to determine if there is any difference in efficacy between every 4 week and every 6 week infusions. Only this study will give us the level 1 evidence still needed to answer your question.

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
Can I take iron supplements during pregnancy to keep my blood pressure from dropping low and to avoid dizziness?

Answer:
For the most part, taking Iron supplements during pregnancy is safe. You need at least 27 mg of iron, but try not to get more than 45 mg each day during your pregnancy or while breastfeeding. However, iron might not influence your blood pressure and symptoms as you are anticipating. I recommend you discuss with your primary care physician or ob/gyn these symptoms. 

Augusto Miravalle, MD FAAN
Clinical Associate Professor of Neurology
Liaison for Neurology, Fort Collins Branch
University of Colorado Denver School of Medicine

​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:
Is burning lips a sign of MS?

Answer:
Burning sensations—or paresthesias—can be a sign of MS, but also can be due to a number of causes and some are completely benign. Proper evaluation by your doctor should help distinguish these in your case.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Here is My Question:
For the past few years, I have suffered from pain on my left side. I have had several recurring dreams where I am diagnosed with MS. I am typically in pain most of the time, my hands tremble, and I notice I am dropping things more. Is it worth me making an appointment with my local doctor to talk about this?

Answer:
Absolutely,  you should discuss with your neurologist these symptoms. As usual, it is helpful to come prepared to your visit with a diary of symptoms and updated list of medications. 

​Augusto Miravalle, MD FAAN
Clinical Associate Professor of Neurology
Liaison for Neurology, Fort Collins Branch
University of Colorado Denver School of Medicine

Here is My Question:
Will I have to be on MS treatment for the rest of my life to avoid worsening conditions?

Answer:
Disease modifying therapies for MS are considered to be a life long commitment, however, there are studies evaluating the  possibility of treatment discontinuation after the age of 65. 

Augusto Miravalle, MD FAAN
Clinical Associate Professor of Neurology
Liaison for Neurology, Fort Collins Branch
University of Colorado Denver School of Medicine

Here is My Question:
I have read that MS decreases life expectancy by 7 years (on average). Is this true? What is the min.-max. years life expectancy? Why?

Answer:
The disease is highly variable. Life expectancy for people with MS has increased considerably in the last 20 to 25 years. According to the National MS Society, on average, an MS patient lives about five to seven years fewer than someone in the general public, largely because of disease complications or other medical conditions, like cardiovascular disease. Only rarely does the disease progress so quickly that it is deadly.


Due to advances in medications and treatments, care, and lifestyle adjustments, MS often progresses slowly. 

Augusto Miravalle, MD FAAN
Clinical Associate Professor of Neurology
Liaison for Neurology, Fort Collins Branch
University of Colorado Denver School of Medicine

Here is My Question:
Does Ocrevus help relieve pain?

Answer:
No, the medication is only intended to help with disease progression, but is not intended to help with symptoms. 

Augusto Miravalle, MD FAAN
Clinical Associate Professor of Neurology
Liaison for Neurology, Fort Collins Branch
University of Colorado Denver School of Medicine

Here is My Question:
I had an MRI on my brain and was told that I have active spots of inflammation and spots of previous inflammation. Because I do not have previous MRIs, there is no way to tell how severe/ how long ago those episodes were. How can I find out how far along I am in the disease or how severe my case of MS is? Is there a way to tell how close/ the likelihood of paralysis or severe disability?

Answer:
The gauge of disability for MS is the EDSS scale that ranges from no disability (0) to essentially bedridden (9.5).  Your score on this scale is primarily based on your neurological examination performed by your neurologist.  MS is unpredictable and can be very different between patients, even those in the same family.  The question that should be considered is what is the most appropriate disease modifying therapy for me?  All of these therapies are preventative rather than reparative or restorative.  When there are signs of active disease (as in your case) a serious conversation with your neurologist should focus on answering that question.  Preventing disability requires appropriate and timely treatment to mitigate problems in years to come.  While it would be interesting to know exactly how far along an individual’s disease course is or when it exactly started, those answers won’t change the “what can I do about this?”  Simply put, if you are in the inflammatory stage of MS, you should strongly consider treating it before the window to do so closes.

A.Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Here is My Question:
I have MS and a Mirena IUD. The last few hours my uterus has felt like a water balloon and I can "feel the water sloshing around". Over the last hour or so its gotten worse to the point where I feel like it's going to "fall out". What can I do to help this go away short of giving myself a hysterectomy? (Side note: kidding on the hysterectomy).

Answer:
I have to admit, this symptom is a new one for me!  I’m assuming you have had a recent gynecological exam since your symptoms started?  If not, that should be reviewed first with your PCP or OB Gyn Doctor.  

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Question:
Can we get rid of all our symptoms permanently or they always come back? During a UTI do our symptoms intensity for MS?

Answer:
What a great question! Let's think about what causes MS symptoms to help you understand the answer better.  Broadly speaking symptoms occur either as part of the disease process or the reaction of your nervous system to the disease process.

The disease process:

1. Symptoms related to the disease process depend on the stage  of the disease and include relapses earlier in the disease and progressive demyelination and axonal loss from ongoing neurodegeneration later in the disease. These symptoms tend to involve loss of function or negative symptoms including loss of muscle function (weakness), vision, sensation, balance, dexterity and cognition. Following a relapse people with MS naturally recover although it is common to experience residual symptoms that fluctuate over time. Generally speaking, full recovery takes 6-12 months and it is unusual to see recovery beyond 12 months except in younger individuals.
   
   

The response to the disease process:

1. Symptoms that emerge as a response to the disease process can occur associated with relapses or disease progression or, more commonly, without any features of active disease. These symptoms tend to involve gain of function or positive symptoms (although not positive in the sense that anyone would want to experience them) and are some of the most annoying problems that people with MS deal with on a day to day basis. These symptoms include pins and needles sensation, neuropathic pain (burning or freeze/burn sensations, electric shock like sensations, MS hug or a tight band like sensation), neuralgia (trigeminal neuralgia), muscle spasms and cramps, muscle twitching, tonic spasms, Uthoff's phenomenon and seizures.  Many people feel that symptoms such as fatigue fall into this category as well. These symptoms tend to be more pervasive, but fluctuate significantly over time, often associated with changes in temperature, and often require ongoing symptomatic management. And yes a UTI can bring out these symptoms.

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
I have been on Tysabri for a little over 2 years and now my white blood cell count and thyroid levels are low what does this mean?

Answer:
A low white blood count (WBC) on Tysabri treatment is very rare and likely indicates an underlying medical issue. Tysabri normally elevates the WBC. Both hypo and hyperthyroidism (an underactive or overactive thyroid gland, respectively) can affect the WBC, but this is especially true of an individual with hypothyroidism.  Ask your doctor to refer you to a endocrinologist. They may also refer you to a hematologist if your thyroid is not the explanation. Good luck

​Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
My wife has PPMS. Her biggest issue is a weak right leg. However in warm weather, she develops excruciating pain in her 4th toe of the weak leg. As soon as the temps go back down, the pain subsides. Any idea how to deal with this?

Answer:
For the sake of brevity, I will assume the pain in the 4th toe that emerges in warm weather is neuropathic pain; This type of pain typically has a burning or alternately freezing and burning quality often with a vague deep aching sensation. It can also be provoked by light touch or stimuli that are not usually painful.

We have two basic approaches to this type of problem and they are not mutually exclusive (meaning both approaches may be required). The first approach is core cooling by the use of cooling vests, hats, and collars. There is a wealth of on line information available on cooling garments and the MS Association of America (MSAA) has a free cooling vest program. It is also useful to lower the room temperature and room humidity with air conditioning but I am sure you've already thought of this solution. If temperature control is not effective or impractical, locally applying a lidocaine patch to the affected area 12 hours a day can alleviate this problem, especially when the area of involvement is this localized.

Ask your doctor about lidocaine patches.

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Benign MS refers to people with milder forms of the disease than the majority of people with MS. The concept remains controversial for a number of reasons. These include the following:

1. Commonly used definitions of MS disability focus on impaired muscle function or movement and do not fully consider the effects of cognitive impairment. We've known for many years that cognitive impairment is a greater limitation to gainful employment and independence than impaired muscle function.
2. Many definitions of benign MS focus on early features of the disease, primary relapse rates and inter-attack interval (the duration of time between relapses) during the first 5-10 years. [None really incorporate MRI data since this is not available in most natural history databases.] Those with few early relapses or a long inter-attack interval without treatment are said to have a greater likelihood of benign MS. While this is often true, it is also clear that some people develop progressive disease later in the course of their MS, despite very few relapses early in the disease.
3. More modern definitions include a low level of disease activity  on serial MR imaging studies in younger relapsing MS  patients (under age 40) not on disease modifying therapy (DMT). This is a rare population, not because this does not occur, but because few patients or physicians make the decision not to go on DMTs and observe the disease off of therapy for any significant period of time. 
4. Most definitions of benign MS are based on an analysis of patients after 20-30 years of disease. When this is done approximately 20 % of people with MS look benign after 30 years. The problem with this approach is that people with MS are often only 40-60 years old after 20 to 30 years of the disease. They still have a significant remaining lifespan during which the disease can continue to worsen. This is one of my pet peeves about discussions concerning the concept of benign MS; we have very few useful studies on the behavior of MS with people over age 65 (geriatric MS).

Despite these reservations the concept of benign MS does serve a purpose when making treatment decisions. Our current treatments work best in younger people (those under 45 to 50) with evidence of ongoing inflammatory disease; few people with these characteristic are found to have benign MS by anyone's definition.

​Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
What if I'm having severe issues with outbursts of yelling and then crying when I am not feeling heard about my symptoms of memory loss, speech, reading and handwriting issues.

Answer:
Psuedobulbar affect or PBA results from a damage to certain parts of the nervous system that lowers the threshold for expressing emotions such as laughing or crying . There are certain key features that distinguish PBA for other forms of labile mood.

1. The outburst or behavior can be dramatic or subtle. Subtle examples include an inability to suppress a smile when the desired response would be neutral or a frown. More dramatic examples include outbursts of sudden crying or laughing for no apparent reason.
2. The expressed emotion is often mood incongruent. An example would be a person who suddenly starts laughing uncontrollably at a sad event or during a solemn discussion.
3. The outburst comes on often without warning and can cease as quickly
4. If cognitive impairment is not severe, the person is at least partly aware of this aberrant emotional expression
5. PBA is a sign of neurological injury or impaired brain development. It is commonly seen in various degenerative neurological conditions including MS. Estimates of the frequency of PBA in people with MS varies widely depending on method of ascertainment, definition and study population. Severe cases are seen in less than 10 % of people with MS but many more experience milder symptoms
6. Treatment often only requires education of the involved person as well as friends and family. When necessary various medications are useful including dextromethorphan/quinidine combination (brand name nuedexta but now generic), low dose tricyclic antidepressants and even standard low dose SSRI class antidepressants.

It is important to different PBA from mood congruent emotional outbursts that are usually not as pervasive as PBA. These labile mood disorders are often associated with psychiatric conditions and personality disorders and are often associated with dramatic changes in opinions and feelings.

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego