Question:
I just turned 68. I wrote you before telling you someone told me that at a certain age, I would no longer have to take a drug for my MS. You told me you could not recommend that since no study had been done on people my age. So I went back to my neuro who is originally from Cleveland Clinic because the Aubagio gave me very high blood pressure. I had an aneurysm last July and was in hospital for 2 months, so was very frightened of high blood pressure.

I have been on Rebif, Gilenya, and Copaxone. Copaxone is the only one that didn't give me any side effects except for lump and redness at injection site. Now my neuro wants me to consider Lemtrada. I have read about that and it scares me to death. The cancer part really frightens me. I'm thinking of taking nothing but I am just in a turmoil trying to decide what I should do. Some people don't take anything. Would it really be wrong of me to not take something for my MS?

I'm going to have an MRI done and thought, if that hasn't changed, why take anything? I'm not expecting you to tell me what to do. That wouldn't be fair, but I would love a good honest opinion. Since I stopped Aubagio, I mainly have only noticed my balance has gotten a little worse. I have been off of it for almost 2 months now. I also read that it has to be removed from your body. How do they do that? Is it with steroids? That's what they gave me but didn't explain why. Thank you so much for listening to me. I'm just desperate to make a decision and hopefully the right one.

Answer:
It is difficult to advise you given my lack of information about your disease course. I can tell you that Alisdair Coles wrote a paper in 2006 called, “The window of therapeutic opportunity in MS; evidence from monoclonal antibody therapy”. In the paper he showed how Lemtrada (called Campath at the time) worked miraculously in early relapsing MS, especially early in the course, but did not prevent disease progression at all in secondary progressive MS. Most people who are 68 years old with MS have secondary progressive type. You need to have a heart to heart talk with your neurologist and have him or her explain why they think you have active relapsing MS. If he or she is able to provide you with convincing evidence that you have active relapsing MS, then Alemtuzumab (Lemtrada) may be an option for you. Hope this helps.

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

Question:
Hi! I struggle throughout the day just to get around my house with a walker. I can barely walk, but I push through the best I can. Late at night, after 11pm, I can move about SO much easier with my walker. It's a noticeable shift in how my MS is affecting me. This "relief" comes at the worst possible time because I try to get a decent amount of sleep. Sometimes it's so tempting to stay up to enjoy my body's attempt at letting me walk again. Why do you think this shift might occur at night? Thank you for your time!

Answer:
You are not alone. Other MS patients have described a similar experience to me. One patient even provided me with videotaped evidence of her experience since I couldn’t believe she could walk at all when I would see her in my afternoon clinics in Boston; this was a patient who got around in an electric wheelchair during the day but found herself able to walk remarkably well during the middle of the night.

​This experience is related to the normal circadian rhythm in your body temperature. The lowest body temperatures are between 10 pm and 6 am every day and this is why your mobility and walking is better in the middle of night. Electrical conduction in the nervous system falters when your body temperature rises even 0.5 degrees in the afternoon. This experience of MS symptoms emerging in the afternoon  when your body temperature is at its highest is just more dramatic in some patients than others.

This is reason cooling vests, collars and hats are so popular with MS patients.

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

Question:
Is disjointed movement associated with MS? For a while I have noticed that if I turn over when sleeping, my head will do a side to side jerky movement. Recently when I wake up my arms, shoulder and head are jerky in movement. I can't find any information about this or anything similar online.

Answer:
Tremors, the jerky movements you describe, do no occur during sleep but often emerge on awakening. When you role over you are transiently wakening up. A tremor is simply an oscillating movement and very common in MS.

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

Here is My Question:
Stiffness with MS, especially legs and arms...Is this common and what is the reason? 

Answer:
Stiffness, muscle spasms, and tightness (i.e., spasticity) is not uncommon in MS.  This is especially true when there is a significant burden of disease in the spinal cord.  The spinal cord carries axons that provide an inhibitory (relaxing) signal to the motor neuron that then goes to the muscle.  When the inhibitory signal is affected, the motor neuron is left unchecked which can manifest as muscle tightness.

A simple treatment includes stretching.  Other medical options can include baclofen, tizanidine, klonopin, etc.  These medicines, if used, need to occur under the direction of your physician.

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

Here is My Question:
I have 2 sons. Lately, when I try to son 1's name I say son 2's name or vice versa. It only happens when I'm not specifically thinking about saying the correct name. It's super frustrating. Could this be related to RRMS? Only episode I have had is ON in Nov 2015 and am on Extavia. Thanks so much.

Answer:
Mistaking and interchanging children's names is fairly common (and not specific for MS).  You appear to have been recently diagnosed with RRMS and are still in the adjustment period for receiving the diagnosis and processing it.  During that period, you may find it more difficult to concentrate.  I would suggest mentioning this to your neurologist who can determine if there are other cognitive difficulties present (to suggest that this could be MS related).  MS can cause cognitive dysfunction, which typically includes inattentiveness, slowed information processing speed, word-finding difficulties, etc.  However, depression/anxiety (which can co-occur with a new diagnosis of MS) can also produce cognitive disturbance.  Once again, your MS specialist should be able to help with this as well.

Hope this helps.

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

Here is My Question:
Can you take Protandim and Tecfidera together??

Answer:
We know of no known drug interactions with Tecfidera. Both Protandim and Tecfidera activate the nrf2 anti-oxidant pathway. We do not know at present if it is safe to combine these agents.

You can read more about Protandim by typing "Protandim" in the search box at the top right of this page.

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

​Question:
I'm having a really hard time with carrying on conversations. I forget things, I miss details, I have to ask people to repeat things, and it is really embarrassing. I read your page on cognition and memory, but do you have any more tips?

Answer:

Did you catch that?
Sometimes you think you heard correctly, sometimes you know you didn’t catch the detail.
 
Sometimes you didn’t even know there was a conversation happening, until later, when someone says “I told you that”.
 
You are embarrassed to say “Can you say that again?”
 
Here are some thoughts (tips) to help smooth conversations out.
 
Always make sure you are looking at the person you are talking to. 
Make eye contact. 
Tell the person you are talking with to turn and look at you. 
It is easier to understand a talking face than the back of someone’s head.
 
Then… try not to say “Can you say that again?”  Think…repeat back what you thought you heard, and let a conversation begin until you are sure you know what you need to know.
 
Question…It shows the person you are talking to that you are engaged.   
Person 1: “I went to the beach last weekend.”
Person 2:  “Oh, you went to the beach last weekend?  What did you do?”
 
Repeat as much as you heard…it shows the person you are talking to that you are listening.
Person 1: “I am going to the pet store to buy cat food, fish food, and a dog toy.”
Person 2:  “You going to the hardware store and you are buying cat food, a dog toy… and what else?
 
Repeat to verify…it shows the person you are talking to that is important to you that you get the details correct.
Person 1: “It is going to be windy tonight, I think we should shut the windows and bring the grill to the garage.
Person 2: “I heard you say because it is going to be windy we should shut the windows and you are going to take the grill to the garage.”
 
Lori Ann Kostich M.S. CCC-SLP, MSCS
Multiple Sclerosis Certified Specialist
Mount Sinai Rehabilitation Hospital
Mandell Center for Multiple Sclerosis

#memory #multiplesclerosis #cognition