Question:
My husband and I want to move into my moms house to support her now that she has some debilitating conditions. I've had MS for 30 years and have found my dogs to be an emotional necessity. Can my neurologist give me a recommendation for an ESA dog so I can keep my dogs since the homeowners association doesn't allow them?

​Answer:
​Emotional support or companion animals are governed under the Fair Housing Act (FHA) not the American with Disabilities Act (ADA). My understanding is that the FHA is not clear on whether refusal to accommodate an emotional support or companion animal is discriminatory under all circumstances. Obtaining a letter from your doctor to the HOA explaining your specific need for this animal should do the trick. 

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
What do you know about the clinical trial at the NIH that is researching the effects of high doses of Idebenone for PPMS?

Answer:
Idebenone is a structural analog of Coenzyme Q10. According to the Clinicaltrials.gov site, the NIH clinical trial in progressive MS is slated to be complete by September 2016

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
I'm new to MS. JCV Antibody positive. I start Tecfidera today. I need to know what I should be measuring/tracking to ensure I don't get the JCV Virus. My lymphocyte count is 1.2 which doesn't translate to the absolute 400,500 etc. numbers I keep reading about. 

Can you please list the various blood tests I should be testing for and what levels of each are good or bad?

Answer:
Welcome to the site. If you search for JC virus and Tecfidera using the search button on the home page, you will find a lot of information already posted on this issue.

At the present time you can forget about the JC virus antibody index while you are on Tecfidera. No one has demonstrated an association between this lab test and risk of PML in Tecfidera treated patients. Focus instead on your absolute lymphocyte count. Your count of 1.2 translates to 1,200 absolute lymphocytes (multiple the lab result by 1000). This is a very good number. A normal count is anything over 900-1000 or 0.9 to 1.0 on the lab test. We become concerned when the value drops below 600 or 0.6 on the lab test. If your lymphocyte count drops below 800 or 0.8 while taking Tecfidera, we usually recommend more frequent testing (every 3 months). If it drops below 600 or 0.6, we test it every month and consider stopping Tecfidera, at least temporarily, if this reduction persists more than 2 months. Of course, whether it is wise to stop Tecfidera depends on your individual circumstances and risk factors. The best decision can only be reached after a thorough discussion with your MS specialist.

A low absolute lymphocyte count is generally associated with a higher risk of rare atypical infections and malignancies. For instance, people infected with the HIV virus develop very low lymphocyte counts without treatment, and this is the reason people with HIV experience unusual infections and malignancies without treatment.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
I just returned from the hospital where I underwent an emergency appendectomy. The diagnostic lab work didn't show any rise in my white count which would have indicated the infection, especially given the severity of the case. This had both my PCP and surgeon surprised. I've been on Avonex since 2005. Could this therapy be buffering the rise in the white count when I have an infection therefore rendering the test useless as a way to gauge infection within my body? 

Answer:
Avonex and all beta interferons can lower your white blood count (WBC), but would not usually blunt the normal rise in your WBC associated with infection. Some people, especially older people, do not mount a strong immune response with a high WBC. Literature suggests that 10-30 % of patients with appendicitis present with a WBC under 10,000 anyway. 
​
If your total WBC and the different types of white blood cells were normal before the appendicitis, I don’t think you can attribute this to Avonex treatment.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
Does exercise help stop MS disabilities?

Answer #1
Great question and thank you! Disability as a result of MS is due to the disease itself. A properly designed exercise program, while not stopping the disability per se, will allow you to overcome the severity and impact of your disability. I myself have MS, and it has impacted my lower body mobilities. It is critical that an exercise regimen includes strengthening not only the affected muscle group(s), but the entire body as well, including your heart AND lungs. 

Daryl Kucera
Certified personal trainer and young sports conditioning coach
Founder and owner of the MS Forward fitness gym in Omaha, NE. 

Answer #2
Exercise and progressive resistance training are the only modalities known to improve function in the majority of MS patients. Some drugs like Ampyra, can improve function in about 50% of patients, but the benefits are greater when combined when combined with an exercise and progressive resistance training program.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
If I have MS, can I get laser hair removal, considering the lasers use heat technology, I was thinking they might cause relapses or otherwise not work well with MS medications.

Answer:
Heat doesn't cause relapses, but can bring out prior symptoms from old multiple sclerosis scarring.  I have had patients undergo laser hair removal without incident.  There is no medical contraindication for laser hair removal from an MS perspective.  

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

It is Spring everyone…time to get some exercise and fight MS! If you have been told that exercise is bad for you, or that it will make you more tired, that is NOT TRUE!  

​Exercise can actually fight fatigue and we have had MANY people on this website talk about how exercise has improved their quality of life.
 
HealthCare Journey is partnering with MS Forward (a non-profit organization dedicated to providing top health based exercise programs for people with MS) to offer FOUR FREE virtual exercise classes for the first 20 people to sign up…what does this mean?  It means that you can join exercise classes that are tailored for MS right from your very own home and for FREE!!
 
Daryl Kucera has had MS for 15 years and is a fitness trainer that has developed tested exercise programs for people with MS.  

Question:
How often do you do a MRI for a possible diagnosis of MS? In my case I had a attack 2 years ago with sensory disturbances. Numbness, tremor and muscle contractions. MRI was normal for both spine and brain. One year later negative for Brain. Now it's been a year since I've had an MRI. I have muscle stiffness that is very difficult at times. My left foot has trouble lifting up. I have read in this site before about neg MRIs ? Could I have MS? Should I ask again for a MRI?

Answer:
Multiple Sclerosis with normal imaging of the brain and spine for 2 years is distinctly rare. It is much more likely that your symptoms are caused by something other than MS. I would have your neurologist re-evaluate your new symptoms.
Good luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
After 3 years on Tecfidera I am now experiencing nausea when I take the med. I never had any side effects before, not anything. I have not changed anything with my daily routine, not added any meds or change my diet or anything. is this common? It's been a couple weeks now, should I think of changing medications?

Answer:
I have seen patients with delayed onset of nausea but this is distinctly less common. If the nausea is mild, try taking the Tecfidera with peanut or almond butter and use ginger root (get at any health food store) as an anti nausea treatment. If this doesn’t work ask your doctor for a mild anti-emetic or try decreasing the dose back to 120 mg once or twice a day and gradually increase back to 240 mg twice a day over 2-4 weeks. If none of these approaches work it is probably time to try another DMT. Good luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
I'm not sure what my absolute lymphocyte count is but I do know that my cd4 was 239 in October 2015. I was told to stop taking Tecfidera. I have not been taking any MS medication since, waiting for my count to rise. My cd4 count has risen to 388 as of February16th. I just had it checked again on April 8th, and it had dropped to 337. I'm looking to start a treatment back now. I was considering taking 240mg of Tecfidera once a day or starting Aubagio. Do you have any idea what would have caused the drop in April? Also, do you think it would be wiser to start Tecfidera back at half dose or to just try Aubagio? Thanks in advance, C.H.

Answer:
There is a great deal of variability in CD4 counts. Women typically have CD4 counts greater than 500 and men typically have counts greater than 400.  This counts will fluctuate even within a 24 hour period and going from 388 to 337 would definitely be considered normal fluctuation. Since Tecfidera dropped your lymphocyte counts, I would not restart this medication. Tecfidera tends to lower CD8 counts more than CD4 counts, so I suspect your absolute lymphocyte count (what you should be measuring) is still less than 600. Aubagio is a reasonable choice but can also lower lymphocyte counts. If you try Aubagio, I would start on 7 mg and monitor your absolute lymphocyte count before increasing the dose to the usual 14 mg. 

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
I have often asked for information on this website and found it very helpful. Thank you for this site.
I was diagnosed in Jan 2012 with optics neuritis which was my first official attack. They told me I had had MS for many years and classified me as inactive. After my diagnosis I was in denial for years and had no symptoms. After 3 years, symptoms started with my right leg, arm etc. and nerve pain. I finally saw a neurologist but unfortunately he was not very good.

After many attempts with my doctor I saw another neurologist. He was good and gave me medication for my symptoms. I moved at the end of October from Monaco back to Australia to obtain better treatment and better communication with a neurologist. This failed as I was on a category 2 list waiting to be seen.

After months we packed up and we went back to Monaco (animals, furniture included). Lots of stress. I am now trying to get help in Holland (where i was born) but also seem to have troubles getting in. If you would know of a MS neurologist here I would be happy to know. I now feel I am at a stand still and I am scared my MS will progress.

My symptoms are getting worse (i.e., pain in leg after one hour walking, headaches etc.) My husband is telling my two sons that my MS is getting worse but to be honest i can still walk very well at a good speed.This worries me. What happens if I do not handle my MS and just let it be?? Sorry for my long story but i feel alone with my diagnosis.

Answer:
You should contact Dr Uitdehaag in Amsterdam. He is the director of their MS clinic.

It sounds like many of your problems could be managed better if you only had access to information. As you mention in your submitted question, you do not actually feel as though you are getting worse; you are bothered more by the uncertainties surrounding your prognosis and the fear of getting worse. Try to focus on how you are doing now and ask us specific questions on problems that are interfering with your life. We may be able to help. Remember, a significant number of people with MS go many years if not a lifetime without developing any non manageable problems.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
Can you comment on the study by an Italian Doctor regarding vein blockage and increased iron in the http://thesecrets.info/italian-doctor-may-have-found-surprisingly-simple-cure-for-multiple-sclerosis-2/

Answer:
Please refer to prior Blogs and answers related to Chronic Cerebrospinal Venous Insufficiency (also called CCSVI) on the website by using the search feature in the upper corner of this page or CLICK HERE.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
I am in my early 60s, stopped taking Avonex 7 weeks ago and will start taking Aubagio in the future. Should I get a shingles vaccine during this interim period of being off any MS medication? If so, how long should I wait before starting Aubagio?

Answer:
We recommend discussing specifics with your treating physician, but in general we do not recommend live vaccines while on Aubagio. We recommend, in general, at least one month between the last dose of a live vaccine and the initiation of a medication that significantly alters the immune system.

Benjamin M. Greenberg, MD, MHS
Vice Chair of Translational Research and Ambulatory Care
Department of Neurology and Neurotherapeutics
Director, Transverse Myelitis, Neuromyelitis Optica Programs
Co-Director, Pediatric CONQUER Program
UT Southwestern Medical Center
Childrens Health
Dallas, Texas

Question:
Hello, My question is regarding pregnancy. I am considering pregnancy, but am concerned about worsening of disease either during or after pregnancy. I have stable disease, no recent flare ups, and I want to keep it that way. I am aware that after pregnancy, I will need to re-start therapy. Thank you so much!!!!

Answer:
Our pregnancy page contains answers to your questions READ MORE 

We also invite you to use the search box in the upper right of this page to read much more about pregnancy and MS.

Here is My Question:
I have 3 MS lesions on my brainstem, my question is if my brainstem keeps being the target what is the future prognosis? Will it cause a stroke as these seem to be the symptoms I get when its active?

Answer:
Brainstem and spinal cord disease from multiple sclerosis carry a greater risk of physical disability. A stroke is an entirely different condition and mechanism of injury than the demyelinating process of multiple sclerosis. When brainstem and spinal cord disease due to MS is identified, it is my opinion that an escalation in therapy may need to be considered (ie, an infusion therapy such as natalizumab or rituximab, for instance). It is always a task to find the right therapy for the specific patient, but when there is valid concern for significant disability in the future, I tend to be more aggressive in offering treatment. This is something you should discuss with your doctor.  

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

Here is My Question:
Can you get RRMS at age 48? If so does that mean it will be a short lived duration of RRMS and go quickly to secondary progressive?

Answer:
The majority of patients with MS will have onset/diagnosis between the ages of 20 to 50.  The age 48 certainly fits this general observation.  Based on what you have mentioned, there is nothing to suggest a deviation from expected time of diagnosis to transition to a secondary progressive phase (if that ever occurs).  Other factors are important to suggest a more disabling course of MS:  1) time from first to second clinical attack (ie, frequent attacks earlier on are worse than years between attacks; the nature of the MS attacks where motor involvement poses greater risk for disability, etc).  This is what we learned from the natural history studies of multiple sclerosis.  It is my experience that early treatment with a proven disease modifying therapy is the best chance to mitigate (and hopefully avoid) permanent disability in the future.

I hope this helps.  

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

Question:
Hi I've been on Tysabri more than 4 years, and I'm desperate to have plastic surgery, I need permission so would there be a problem with this?

Answer:
We can't give you permission, as you will need to obtain that from your own physician, but we have had this question asked before which you can READ MORE

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