Hi everyone,

While treatment for MS with medications is important, we also realize that there are many other things that help people with MS feel better such as diet and exercise.  Many patients also report that alternative therapies are helpful in maximizing their quality of life.  These include yoga, massage, tai chi, healing touch, and many more.

To help you understand the pros and cons to each of these and give you access to credible information and resources, we are starting a health and wellness center on the website.

Each month we will highlight a different health and wellness topic for your to consider on your MS HealthCare Journey. Please provide feedback as we go so that we know what you need and what is helpful.

This month we will be highlighting yoga.  We have interviewed Mindy Eisenberg who has been teaching yoga for people with MS for 14 years and she has written a book entitled Adaptive Yoga Moves Any Body for people with MS (please note this book will not be available until fall).

So stay tuned for the first HealthCare Journey Health And Wellness podcast and information about yoga and get moving!

--The HealthCare Journey Team

Here is My Question:
I have 3 lesions on my spinal cord. What could cause this? Does this mean I have JC virus or PML?

Answer:
I have always hated the term, “lesions”, because it so non-specific. The literal translation is something structurally abnormal. In the context of Multiple sclerosis, a lesion usually refers to a white spot (T2 hyper intense) on MRI. These T2 hyper intensities or white spots are common in both the spinal cord and brain. In fact it is extremely rare for a person to have MS without these white spots on MRI. The good news is that PML does not typically involve the spinal cord so you do not have to be concerned about that diagnosis. If you have MS, then that is the most likely cause of the white spots on your MRI can.

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

Hey everyone! Donn is a blogger for our site and he named his team HealthCare Journey for MuckFest 2015 in Detroit.  He wants to be the number one fundraising team (all donations go directly to the National MS Society), so please help him out so the HealthCare Journey team is number one! Here is the link http://main.nationalmssociety.org/site/TR/MuckFest/MIGMUCKEvents?team_id=404269&pg=team&fr_id=25326

The shirt below is what Donn's team will be wearing for MuckFest 2015...wish them luck!!

Question:
My memory is getting worse and worse.  I know I'm getting older and many women who don't have MS say they can't remember anything either, but this is ridiculous.  Any ways I can improve it?

Answer:
You aren't alone.  Read this great blog by Lori Kostich from the Mandell Center for Multiple Sclerosis about memory and ways to improve it READ MORE

Here is My Question:
I had a neurological attack a year ago. Numbness, tingling, my muscles started to contract, and a tremor started. This lasted a month then resolved. I had low vitamin b12 at the time which we thought was the issue. I had 2 brain MRIs and spine MRIs but they were all negative. Then stifness of muscles started and has never gotten better. I have a hard time climbing stairs or bending and getting back up. I have seen a few neurologists and one was a MS specialist. We did an Ecp and it was fine and we did brain and spine again and all were negative. Lyme disease was neg and vitamin b12 was back up to normal. I have numbness that goes and comes and I feel weak in my leg muscles at times and get tired easily. The stiffness is the worst. My question is what else could this be? They all saw no lesions and no MS, but I have had every blood test and all MRIs are negative. I have no where else to turn. What is my next step? 


Answer:
Neurological diagnosis is really all about the history and the physical. While your symptom description is useful, it is by no means an adequate history. If the data your provide is accurate, then MS is unlikely. One possibility based on your description is stiff man syndrome. This is a rare autoimmune disorder related to antibodies again glutamic acid decarboxylase (anti GAD antibodies). Incidentally, these anti-GAD antibodies are also often elevated in diabetics, so this test must be interpreted with caution. Stiff man syndrome consists of painful muscle spasms often in the back and leg muscles typically provoked by stress and strong emotions. The diagnosis is almost always missed early in the disease. 

Whatever the cause, your really need to find a neurologist who at least tells you something. Telling you what it is not, is not very helpful.

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

Question:
Could you recommend a MS yoga instructor or class in the Franklin, MA area?

Answer:
We first looked on www.yogahealsus.com for an instructor that might be in your area who has worked with people that have MS (this website has people around the country that specialize in yoga for MS so check it out). For you we found Betsy Barry, who is the owner of Franklin Yoga & Wellness who has qualified staff members who have experience with MS and can work one-on-one, or within a class setting.

Franklin Yoga and Wellness
1256 W Central St #2, Franklin MA 02038
(508) 520-4515

We are starting a Health & Wellness section on HealthCare Journey (this website).  We recently interviewed Mindy Eisenberg, who specializes in yoga for MS and will be posting the Podcast for the interview very soon.  Please watch for it as it will provide a lot of information about yoga for people with MS. Good luck!

Here is My Question:
I broke my femur 9 months ago and still can't walk with my walker. My leg is so weak. I have RR MS. Physical therapy is not helping. Who can help me? Do I just have to be patient OR will I have to use a wheelchair now?

Answer:
I am so sorry to hear about your difficulties after breaking your femur. Without knowing your case it is difficult for me to determine your likelihood of returning to safe ambulation with a walker. I can tell you that advanced rehabilitation techniques may be required. If is it safe and your doctors believe it is possible for you to return to safe ambulation (both big ifs) your therapists should have you walking on the parallel bars or even using a lokomat to assist with ambulatory recovery. The next 3 months are critical to your success, so this should also be addressed with your MS specialist asap.

Good luck

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

Here is My Question:
This question is two fold. Are there any stores or senior establishments that will swap transport wheelchairs? We currently have a 19 inch one but need a larger one (22 or 24 inch). The other question would be do you know where to rent that will deliver to a ship? I know special needs at sea does this but the fee is greater than buying a new chair. I am trying to prevent having to initially travel with the chair and luggage, etc. 

Answer:
Without knowing what part of the country you are from, or where the ship is (how far would it need to be shipped), or whether you have purchased or rented the wheelchair you currently have, it is difficult to answer your questions.  We would recommend that you contact a few durable medical equipment dealers.  Some of these dealers in New England are:

Home Care Specialists
113 Neck Rd, Haverhill, MA 01835
(978) 373-7771

Laterno's Pharmacy
349 N Main St, Andover, MA 01810
(978) 475-7779

Hudson Seating and Mobility
470 Wildwood Ave., Ste. 4
Woburn, MA 01801
(781)897-6100

Alternative Care Providers, Inc.
51 Middlesex St., # 103
North Chelmsford, MA 01863
(978)251-7077

We did contact Home Care Specialists on your behalf and they said that if you rented a wheelchair it is likely that the company you rented it from would swap it for a larger size. Alternatively, if you purchased your wheelchair, they would not be able to swap it for a larger size, but if it has been more than 5 years since the purchase, insurance might cover a new one and perhaps they could deliver it to the ship.

I hope this helps and thanks.

Here is My Question:
Is it true that after a certain age, you don't have to take any MS drugs (I'm on copaxone at the time) (and I am 67). I heard that after awhile the immune system "settles down" or something like that. If true, when is it safe for me to stop? Thank you!

Answer:
It is true that relapses and new lesion development on MRI both get less frequent with age, especially over the age of 60, but there is little evidence that treatment effects wane with age. In fact there is very little data to either support or refute the use of disease modifying therapy in older populations, because most studies do not even include patients over the age of 60. The current recommendation is to base treatment decisions based on individual disease characteristics not on arbitrary age cut offs. If a person has active disease or is at significant risk of active disease, then the therapy is warranted regardless of age group. By the way active disease means relapses and/or new lesion lesion development on MRI.

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 search of a good MS Neurologist and have found one. I phoned the reception and they need an email from my current Neurologist or doctor. She asked what sort of MS I have and I told her inactive. She said to me "okay so it is not urgent" This is in France. I notice every time i say inactive, it seems its not important to be treated. I have a lot of pain in my right leg and I need a good Neurologist just to prescribe me some medicine for this pain. So is inactive not bad enough????regardless of my pain?? How does a Neurologist look at inactive versus active? Mind you inactive can turn active so I'm confused??

Answer:
The response that you received regarding your “inactive” MS statement certainly suggests a lack of understanding of the new MS Classification system.  Whether a person is ‘active’ or ‘inactive’ has little to do with either the number of health problems or symptoms they are experiencing or their severity. In your particular case being ‘inactive' simply means that you have not experienced a relapse or new a lesion on MRI since your last evaluation. 

In fairness to your doctors we all try to prioritize appointments for patients getting rapidly worse, either from a relapse or disease progression. This does not mean your concerns are not important or even urgent. Living with significant pain can create a number of detrimental long term affects. I would suggest avoiding the ‘active’ or ‘inactive’ terms when requesting an appointment and simply state that you have severe pain related to MS and need help.

Good luck

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

Question:
What impact (if any) does menopause have on MS?

Answer:
Good question. Someone asked a similar question a while back.  Here is the link: http://www.healthcarejourney.com/q--a-for-virtual-ms-center/menopause-and-ms


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 MS and went blind in one eye for two days. Scariest thing ever. My doctor said this is common in MS. My questions are why is this common in MS? Why does this happen/what is going on in my body with the MS that would cause just one eye to loose sight (so weird), and is there anything I can do to prevent it from happening again??

Answer:
Losing vision in one eye can happen in MS due to a condition called optic neuritis.  The vision becomes blurry because of inflammation in the optic nerve (the optic nerve connects your eye to your brain).  With MS, the body's immune system can sometimes cause inappropriate inflammation and damage to the optic nerve leading to temporary vision loss. The immune system's attack on the optic nerve may flare up, and then the vision becomes blurry.  The vision returns back to normal (or almost back to normal)  when the inflammation resolves and the optic nerve has time to heal.  

Usually patients do not go completely blind but experience hazy or decreased vision associated with pain in the eye. 

The eye pain is typically worse with eye movements.  Usually the vision loss associated with optic neuritis will resolve after a few weeks but can improve more rapidly if treated with intravenous steroids.  

To prevent recurrent episodes of optic neuritis, patients with MS should be on some form of immunomodulatory therapy that is FDA approved for relapsing multiple sclerosis (for example, interferon therapy, glatiramer acetate, natalizumab, or one of the several pills now approved for MS). To figure out which medicaiton is best for you, consultation with your neurologist or an MS specialist is required.

Finally, not all forms of transient vision loss are due to multiple sclerosis.  If you or your neurologist are not sure what caused your vision loss, consider seeing a neuro-ophthalmologist for further evaluation."

Sincerely,

Benjamin Osborne, MD
Associate Professor
Departments of Neurology and Ophthalmology
Georgetown University Hospital

Here is My Question:
My GP prescribes 'Sifrol' for me. I have pain in my right leg and arm and hand and behind my eye. I know this is for restless leg syndrome but honesty I have nerve pain so how will this help me? I have taken it for one week now with no results. My problem is finding a MS Neurologist.

Answer:
This is an excellent question. We do not usually use a dopamine agonist like pramipexole (Sifrol is a brand) to treat neuropathic pain. You may want to suggest a trial of gabapentin or pregabalin to your general doctor. Good luck.

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

Question:
How can I deal with constant lightheadedness, periodic vertigo and the need to hold into objects to stay upright?

Answer:
The symptoms you describe may not be due to MS.  I would suggest that you bring up these complaints with you physician soon so she/he can examine you (including checking your vital signs in different positions:  laying down, sitting, and standing up) in order to discern what is the cause.  In the meantime, keep yourself hydrated.  Without knowing the cause of your symptoms, it is not possible to give specific recommendations.

A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center

Question:
Why did Biogen make Plegridy a subcutaneous shot instead of an IM one like Avonex? I'm switching from Tecfidera (which I took from 5/2014 to 5/2015) to Plegridy on June 12 because of my persistent low lymphocyte count, and I'm feeling very nervous about the possibility of injection-site reactions. I took Avonex for over 14 years (2000 to 2014), and never had an injection-site reaction. My neurologist didn't want me to go back on Avonex because I had 2 flare-ups within a 6-month period of time right before I switched to Tecfidera (however, from July of 1992 until October of 2013, I was relapse-free). I really wish Plegridy was an IM shot!

Answer:
My understanding is that Biogen elected to administer Plegridy subcutaneously based on market research suggesting that patients preferred subcutaneous injection. I personally disagree with this assessment. My experience has always been that patients prefer subcutaneous over intramuscular interferon shots only until they have experienced both forms of injection. With experience most patients learn that intramuscular injections are not as painful and do not create pain skin reactions as often. We are almost pre-programmed to think that a larger needle injected slightly deeper is more painful when this is not at all the case with interferons.

Whether Plegridy is the best choice for you now is a different question altogether. If you had two relapses on interferon beta 1a (Avonex) within 6 months of starting tecfidera, why would pegylated interferon beta 1a produce a better response? They bind to the same receptor and have the same mechanism of action. There is certainly no evidence that Plegridy is superior to Avonex. If would seem to me that you and your physician should be considering a non interferon choice at this point in time. After all, there are a lot of treatment choices available today.

Discuss this further with your MS specialist and good luck with whatever decisions you make together.

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

Question:
Thank you for reading my short medical history below. I am looking for advise on MS. I am a man - age 62. In August-2014 my MRI was clear (no lesions) but the MRI for my spinal cord showed two lesions. One lesion 1,2 cm long in Th9 vertebra, and one lesion in C2 vertebra. Oligoclonal bands (OCBs) were found in the cerebrospinal fluid (Oct-2014). No changes in both spinal cord and brain MRIs (6 months later – Feb-2015). A test on anti-AQP4 antibodies was negative.

My neurologist's opinion is that I have MS but without clear diagnosis (PPMS, PRMS etc). I have started therapy with 20 mg Copaxone injections as of Jan-2015 (3 times per week), following my neurologist advise.

Clinical condition: Walking difficulties as of September 2014, fatigue and sometimes sleepy for some seconds (watching TV). Very often numbness on left hand. Left foot slight drop after walking for 1Km distance. The foot drop symptom after long walking (more than one Kilometer) was present even 3-4 years ago. I have never had any visual disturbance (diplopia) or relapse experience up to now. Testing of VEP (Visual Evoked Potential) in June 2015 showed a slight signal delay (0.3 degrees) in both eyes. I am not sure its a NMO indication. but the doctor who made the VEP exam told me it is possibly not.

I would appreciate your advise on the following questions:

Do I have to do more medical tests or another MRI (one year after the first one) is enough?

I am not sure I am following the right medication treatment since Copaxone is provided to patients with specific MS category and I do not have any clear MS category diagnosis yet. Thanks in advance for your help.

Answer:
This diagnosis of MS is a clinical one (no one test can definitively render a diagnosis), which can lead to some ambiguous cases from time to time.  A critical component for a diagnosis is that reasonable alternative diagnoses (i.e., mimickers) have been ruled out.  The AQP4 antibody was a reasonable test, and is typically run on the blood (however, there are cases where the blood test is negative, but he spinal fluid test is positive).  Other things that likely require consideration is for your physician to check a vitamin B12 level (with homocysteine and methylmalonic acid), HIV, ANA, SS-A/B, ACE, and a copper level.  I suspect that some (or all) of these may have been checked as well.  Based on the other results of your spinal fluid and your clinical presentation, your neurologist may have looked into causes of myelitis (inflammation of the spinal cord which can be confused with MS).   Whenever I come across a possible MS diagnosis (but the brain MRI is completely normal), I think it is very important to screen for mimickers as MS nearly always affects the brain.  With that said, individuals with PPMS tend to have very little evidence (but some) on the brain scan with more notable findings on spinal cord imaging.

Copaxone is probably the safest medication we have for MS, so if your neurologist feels confident that he/she has ruled out reasonable mimicking diagnoses, then that may be a reasonable approach to treatment.  Keep in mind that the disease modifying therapies are all 1) partially effective, and 2) take time to exert a beneficial effect on the inflammatory changes of MS.  In the case of Copaxone, it may take a little while longer to take hold.  As you just started this medication 5 months ago, I would advise patience at this point, and discuss with your neurologist appropriate goals for the therapy.

A. Scott Nielsen, MD MMSc
Virginia Mason Multiple Sclerosis Center

Question:
My doctor said I need to exercise more and I've tried but I'm too tired!  I don't understand how exercising is going to help.

Answer:
Your doctor is right.  Exercise is important!  Here is a blog I wrote that might help http://www.healthcarejourney.com/q--a-for-virtual-ms-center/do-you-need-to-exercise-if-you-have-multiple-sclerosis

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

I've been on Tysabri for more than 3 years. I really want plastic surgery but i would need my neurologist's permission!! I would be very disappointed if he said no, what do any of you think about this?

Someone previously asked this question and here is the answer READ MORE

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:
After visiting my GP he suggested to maybe think about using Avonex. My MS is inactive but he said this would slow things down as I have nerve pain and after activity things get worse. He said this medicine works before it gets bad or active. He was talking about injections once a week. Any advice on this?

Answer:
Avonex, similar to the other disease modifying therapies, have been shown to do 3 main things:  1) cut down on the frequency of MS relapses, 2) cut down the number of new lesions on the MRI scans, and 3) reduce the accumulation of disability in the short term (and likely long term).  Based on your question, I have reservations about the use of Avonex (or any disease modifying therapy) to help your "nerve pain" that gets worse after activity.  It sounds to me that you are experiencing the fluctuating symptoms of MS that occur due to old MS scars/damage.  In that case, use of symptomatic (rather then disease modifying) therapies are in order.

For MS to truly be "inactive", we look for no clinical relapses, new MRI activity, or accumulated disability over time.  To answer this question, it requires the expert care of an MS specialist.  I would encourage you to see one of these specialists to answer your question regarding a need to use Avonex (or similar therapy) versus symptomatic management.

Here is a link to help you find an MS specialist/MS team in your area http://www.healthcarejourney.com/just-been-diagnosed-with-ms.html

A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center