Please read a previously asked question and answer about smoking HERE

Also, people have been reporting good success with the website called smokefree.com (not smokefree.gov but smokefree.com). There is an app you can download to see how much you save by not smoking, how long you've been smoke free, and provides ideas and incentives to keep you from smoking. Try it and let us know if you have success.


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

Here is My Question:
Can inactive MS skip RRMS and head straight to Progressive MS??

Answer:
It is not uncommon for inactive MS to turn into progressive MS with time. Only about 25 % of patients remain stable indefinitely. Remember, only the relapses that occur early in the disease (the first 5 years) are related to the rate of developing progressive disease. Relapses always tend to become less frequent with age and disease duration. After sometimes many years of this apparent stability, it is not uncommon for problems to slowly develop. These problems often involve worsening of your walking ability. 

Less commonly we see patients who experience an attack earlier in life, often optic neuritis, then remain stable for decades before developing a progressive gait impairment. These patients often do not receive a diagnosis of MS until the later problems develop with walking. Some of my colleagues in Canada call this single attack onset progressive disease.

It is our hope that the use of highly active disease modifying therapies early in the course of the disease in well selected patients, will forestall or prevent the development of this progressive disease years later. 

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 been on Tysabri for 9 years and have not had any new or enhancing lesions. Does this mean my disease has been been in "remission"? Or is this what is called non inflammatory - degenerative disease?

Answer:
Please read my most recent Blog on disease classification. 

​If you’ve been on Tecfidera for 9 years with no new T2 lesions (white spots) or enhancing lesions and you have experienced no relapses or worsening of your condition in any way, we consider you relapsing inactive. Going 9 years without disease activity or worsening is remarkable and very gratifying I’m sure. If there has been no relative increase in brain atrophy (compared to a healthy aged matched control population), I would consider you disease free. 

The only other possibility is that you have a static condition (not MS) that we would not have expected to worsen over time.

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

Here is My Question:
I had a mild flare beginning of February and took 3 days solu medrol. A few days later had a feeling of numbness from head to toe so did another round of solu medrol and still the same. I'm on Avonex but they are switching me to Copaxone. My question is will this go away or is there anything else that can be done? It's interfering in the way I do things. I'm a cashier and currently on a medical leave because my hands are numb. Any ideas? Thanks.

Answer:
There are 2 topics/questions in your submission:  1) disease modifying therapy effects and 2) symptoms.  Briefly, the decision for when to switch from drug x to drug y is based on clinical course on drug x as well as MRI surveillance of the MS disease.  Whether you will do better on copaxone than avonex, is anyone's guess.  I would add that if you have spinal cord lesions from the MS, then medications like Avonex (not Copaxone) may aggravate the symptoms that come from the spinal cord lesions (in my experience).

Regarding your symptoms, if your problem is numbness (ie, can't feel anything) then time is likely to be required (to allow recovery).  If you are having problems with feeling abnormal sensations (ie, burning, tingling, etc) that are overwhelming, then your doctors can use medications temporarily to help take the edge off those sensations (medications like gabapentin, Elavil, etc).  Numbness (or complete lack of sensation) won't be helped by those medications, but time would be required for your nervous system to recover and re-establish connections around your MS lesion that cause the symptoms in the first place.

If you are also clumsy in the hands (ie, not able to reliably operate the register), then your doctors may use physical therapy and/or occupational therapy to hasten recovery.

Hope this helps.  

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

Here is My Question:
I have MS, essential thrombocythemia (ET) and hemochromatosis. I take hydrea for my ET and Gilenya for my MS. My problem is my lymphocytes are .22 and my ast/alt are 4.5x the upper limit. I don't want to stop taking gilenya. It seems the two meds are amplifying the immune system suppression. I have read several cases of taking GILENYA every other day. Any opinion on doing that? Or should I medicate different for my ET? I only take hydrea 500mg every third day.

Answer:
Essential thrombocythemia (ET) is a condition where the megakaryocyte (cell in the bone marrow) release large amounts of platelets into the blood stream to aid the body in blood clotting (and avoiding bleeding out).  ET is a condition where you have way too much platelet production that can lead to several unwanted problems with blood clots, among other things.

There are a few early studies of the use of S1p modulation (this is the target of Gilenya) that may affect the differentiation (development) and activity of megakaryocytes.  Animal models suggested that S1p modulation may increased platelet counts.  On the other hand, there have been reports of lowering of platelet counts on gilenya in patient with multiple sclerosis.  If this is the case for you, then Gilenya may very well be playing a dual role for the MS and ET.  When reviewing the literature, I am not aware of any data that proves Gilenya helps ET.

The bottom line is that Gilenya, like our other therapeutics, are not benign and can cause unwanted problems (in your case, the liver function tests are quite elevated).  I'd strongly suggest that you speak with your neurologist about your unique situation (and your hematologist) to determine if Gilenya is helping the ET.  If the answer is "we don't know" or "probably not", then you may want to look to another DMT if your liver function tests continue to stay elevated.  However, as you point out, we do use Gilenya on an every other day basis with good results (this is off label) for many patients with MS.  That should also play a role in your doctors' (and your) decision making on transitioning to another therapy.

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

Question:
I have PPMS and just started the steroid infusion treatment. I love what it has done for me. My question is regarding the steroid infusion treatment and RSD that a friend's daughter has. Would or could this treatment also be something that may help RSD. I know there is little known about RSD and like MS there is no cure. If the steroid infusion would even help people with RSD that would be great.

Answer:
Steroids in various doses and administration regimens are often used to treat complex regional pain syndrome (previously called RSD) early in the course of the disease (first 6 months only). After 6 months there is no good evidence of benefit and many problems associated with this therapy.

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

Question:
Washout time from Copaxone to Lemtrada?

Answer:
There is no washout time required when going from Copaxone or Glatopa (generic Copaxone) to any other disease modifying therapy, including Lemtrada.

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

 Question:
Is insomnia a common issue with MS patients? I can't sleep to save my soul at night. Also, how common is bowel incontinence? Seem to have "troubles" at night when I can sleep. Not sure what to do about it?

Answer:
We written a great deal on insomnia in MS. Please try our search engine (upper right corner of this page) to look for prior blogs and answers to user questions on this issue. Just search for sleep problems or insomnia. This will help you get started on addressing this issue. You will need to have your doctor or a sleep specialist take a good sleep history and possibly do some diagnostic studies to determine the main cause of your insomnia. http://www.healthcarejourney.com/apps/search?q=sleep

Bowel incontinence is far less common that urinary incontinence in MS and tends to occur in more disabled patients. You need to see you doctor for a good history and exam that includes a rectal exam. Occasionally, your doctor will need to send you to a gastroenterologist who specializes in gastric motility problems. http://www.healthcarejourney.com/bowel-dysfunction.html

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

Question:
I've had MS for 17 years now and will begin Rituxin soon. How long can I expect to see a change?

Answer:
This really depends on the stage of your disease. The goal of therapy with rituximab is to halt relapses and prevent further worsening of disability. The effect of treatment is maximal within 3-6 months of treatment onset but it takes much longer to determine if your disease has stabilized. Any improvement in your condition may take over 6 months to become apparent, if any improvement is even expected.

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

Question:
How long is it safe to take Tecfidera?

Answer:
No one knows how long it is safe to take Tecfidera. Even though it has been used to treat psoriasis for several decades, the average duration of treatment in psoriasis patients was less than 2 years. There are now many MS patients who have been on this medication for 3 years. We believe it is safe as long as you do not experience a prolonged reduction of lymphocyte counts but we will need to follow patients for many years to be completely certain. I would remind you that is true of many treatments used in medicine. It takes many years after a medication is approved to determine the long term risks of the therapy.

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

Question:
Is there reason for concern when after stopping Techfidera, in August, because of low absolute lymphocyte count, my count has only rebounded to 560 at the highest. (It started in the 200). And I started Aubagio in Dec. and my count dropped back to 480.

Answer:
It is well known that absolute lymphocyte counts can remain low for a long time in patients who were previously taking Tecfidera. In my experience this is related to the duration of lymphopenia (low lymphocyte count) before stopping the tecfidera. This may actually help in the treatment of your MS since lymphocytes of different types are involved in the immune process damaging the nervous system in MS. On the other hand this may also may you more susceptible to certain infections or even malignancies in the future. Although Aubagio does not significantly lower lymphocyte counts, it may make it more difficult for lymphocyte counts to be restored to normal levels. Depending on your risk factors for relapses and disease progression, you doctor may want to consider stopping Aubagio until your lymphocyte counts are above 900.

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

Question:
Hello! My husband has had relapsing/remitting MS for almost 15 years. He was diagnosed at 18, and has been on Rebif for most of that time. He briefly switched to Gilenya, but it lowered his white blood cell count too much and his neurologist took him off of it and recommended Copaxone. He started the Copaxone about two weeks ago, and after the first two injections, he has experienced weakness in his legs (described like jelly) and a loss of dexterity in his left hand.

He has been struggling to type with that hand and carry things. His doctor recommended that he stop the Copaxone for a week and give his body a chance to get it out of his system. To me, this sounds like the MS progressing, but his doctors think it is too coincidental that the issues began with the start of the Copaxone. I was unable to find any of these issues listed in the side effects - have you ever heard of anything like this? Thank you so much! 

Answer:
There is no literature (case studies or other studies) on transient worsening at the onset of Copaxone therapy and I have never observed this in practice. More importantly, Copaxone is not likely to be helpful 15 years or more into the course of MS. I would suggest that your doctor look for a source of infection and if none found, treat him with a course of high dose steroids if there are no contraindications. Depending on his risk factors and where he currently stands in the course of his disease, he may be a candidate for a highly active MS therapy (Alemtuzumab, Rituximab or tysabri). If he is not currently seeing an MS specialist, a second opinion at an academic MS center may help you and your current neurologist plan a course of 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 am currently working for a man with MS and trying to help. He is having a real hard time sleeping at night and is taking medications that are not working and really can't function or focus the next day and is not able to do much like go outside and get sun, think, etc. and is very unhappy. He also has restless leg syndrome and is on a medication for that as well. He is struggling...can you help please?

Answer:
There are lots of reasons for not sleeping, all of which require different treatments. If we assume his only problem is restless legs syndrome, then he either needs the dose of his current medication adjusted or he needs a different medication. He should discuss this with his doctor. Common additional reasons for not sleeping in MS patients include the following:
1. Leg spasms and nocturnal leg movements
2. Sleep apnea
3. Pain
4. Depression
5. Anxiety
6. Waking up to urinate frequently
Good luck with helping him. Have him start by contacting his MS specialist and ask for a visit visit to discuss only his sleep problems. I often find that people with MS do not establish clear goals for their visits and this lack of preparation means the doctor does his or her thing and never gets around to addressing the most important problem.  Have him write out the reasons he believes his sleep is disrupted before the visit and have him specifically ask for a visit to address this issue alone.

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

Here is My Question:
Hello, I am a 31 yr old male diagnosed with MS last year. I was also diagnosed with Erectile Dysfunction and low testosterone - my MS Specialist told me that it is related to MS. I'd like to know your opinion on this. Also, myself and my wife are eager to start our family, but due to these issues we are not able to. I saw a urologist last week and he recommended starting Clomid (50mg -3times a week) along with Cialis as needed. I would like to know if Clomid has any relation to a MS relapse or makes MS symptoms worse? Right now, I have very mild MS symptoms like tingling and slight numbness. I'd love to start Clomid and start trying, but I am just worried about the MS symptoms getting worse with Clomid? Thank you in advance for your response.

Answer:
While ED can be related to multiple sclerosis there are lots of potential causes that require a workup and examination from a urologist. If this is indeed found to be a cause of ED, there are a variety of approaches in terms of management. The use of Clomid can be justified and there is not a known contraindication.

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

Here is My Question:
In 1994 they said I have MS but now last week (3/8/16) they said I don't have it. My question is I went from taking Copaxone to a glatopa shot every day since I was diagnosed. How will this effect my body?

Answer:
Long-term use of Copaxone is considered safe. Copaxone is arguably our safest disease modifying therapy to treat multiple sclerosis. The main issue with this medication is that it can cause spots of lipoatrophy (i.e., melting away of the fat pad at the side of injection).  This can lead to dimpling of the skin. This is more of an aesthetic concern rather than a health concern. Glatopa, the generic to Copaxone, was recently approved for use in 2015. We do not have long-term data on this; however, we assume the same side effect/risk profile as Copaxone.  

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

Here is My Question:
I thought that my house was vibrating due to the rock quarry doing some blasting as they normally do, so had no worries. But I started worrying when it was 11:23 pm and the quarry shut down at 5pm because I realized that it was my body that was jumping and I could not stop it . What's happening?

Answer:
​A sensation of vibration, especially in the feet, is common in MS. “Body Jumping” is something entirely different. This could be anxiety, shivering, a tremor or something called myoclonus. You will need to talk to your MS doctor about this but it doesn’t sound serious or even urgent based on the information you provided.

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 been very sick since 12/24/2015 with extremely high levels of Eosinophils showing in blood (6,642 in Feb). 

Having had chronic diarrhea daily, and all sorts of Gastro type issues. Went through rough 5 days of high fever, vomiting, body aches etc. twice now in the past 3 weeks. 

A colonoscopy also showed tissue involvement showing high eosinophils. Awaiting follow up appt. with Hematologist in 2 weeks. 

My Neuro saw me last week, and when I caught him up on all this is going on, he asked me if I had ever heard of Dress Syndrome. He immediately felt it important to stop my current DMD medication (Aubagio), and initiated the "wash out" for 20 days, followed by starting Copaxone until this gets resolved.

Do you have any insight into MS, Aubagio, and very high Eosinophil issues? I have been on Aubagio since 07/2013 and would have never suspected that to be the culprit.

Just wanting to feel better asap! Having been sick now almost every day for 2+ months is taking its toll! So many doctors, tests, etc... but no clear answers....

Answer:
I'm sorry to hear of your experience that likely is due to Aubagio.  DRESS syndrome is simply a drug hypersensitivity that manifests as fever, rash, lymph node enlargement and other organ system involvement.  What is a little odd is that you've been on Aubagio for 2.5 years.  DRESS syndrome tends to manifest within the first few months of starting the medication.  The sister compound to Aubagio (teriflunomide) is called leflunomide.  Leflunomide has been associated with DRESS syndrome, so it only follows that Aubagio can do the same. 

Given your long exposure to Aubagio, I'd suggest reviewing all medications that you may have been exposed to within 2-3 months of onset of  your symptoms to entertain the possibility that another medication may have precipitated your experience.  With that said, I do share your neurologist's concern that Aubagio is the likely cause.

This is a rare adverse reaction, and the main treatment is removing the medication.  Cholestyramine elimination protocol (washout) is appropriate.  Once again, review with your doctors any other possible source of your reaction to optimize your recovery.  I hope you get better soon.  

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