Here is My Question:
I have a new lesion that is listed as possible encepholomalacia in the thalamus that is new from last MRI 7 months ago. Is this from MS?

Answer:
This could be from MS or another process. Without knowing your case or seeing your images it is not possible to answer your question.

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

Here is My Question:
I’ve had numbness in my limbs for the last 6 years, but since last one month it has increased, and I've been using a walker since last one year. Please help & tell me any remedy.

​Answer:
It sounds like you need to see a neurologist to start.

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

Here is My Question:
When do I need to take action to come off Ocrevus if it’s not working and I’m deteriorating at much more aggressive rate since I’ve gone on Ocrevus. What are my next options then?

Answer:
When to stop Ocrevus depends on several factors including your age, disease type, disability level, prior treatments and complications while taking Ocrevus. You would benefit from an evaluation by an MS specialist to help you with this decision. If it helps, I typically encourage my patients to set specific goals before initiating a treatment. This makes it easier to determine when it is time to stop treatment or consider another treatment. Many of the options after treatment with Ocrevus include participation in various ongoing clinical trials. Your MS specialist can tell you how to find out about clinical trials in your area for patients with your disease characteristics.
Good luck

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

Here is My Question:
Can Kesimpta cause hair loss?

Answer:
Ofatumumab (Kesimpta) is not associated with hair loss.

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

Here is My Question:
How to decrease blood levels of JCV?

Answer:
I believe you are asking how to decrease your JCV index level ( a blood test to determine antibodies directed against the JC virus), if you are positive. There is no reliable method for decreasing your JCV index level. Several studies suggest that treatment with B cell and T cell depleting agents (e.g., rituximab, ocrelizumab, ofatumumab and alemtuzumab) can decrease the value of your JCV index and treatment with natalizumab and fingolimod can increase the value of your JCV index. The significance of these associations is unclear currently.

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

Here is My Question:
I have long standing Type 1 diabetes and MS. How to I determine the etiology of my foot cramps between MS vs periperal neuropathy? I have had foot cramping in years past, but it resolved- it is now more consistently present. I usually get routine MRI’s done year.y- which have shown no change. I am an RN and knowing how to differentiate the symptoms is important to me.

Answer:
PS Foot cramping is common in both diabetics and people with MS. See my last response

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 (again)- I just submitted a question regarding T1D and MS symptoms of foot cramping/numbness. I forgot to add that I have had T1D for 49 years- with reasonable glucose control- I wear a pump/cgm. The MS was formally diagnosed 10 years ago, but I may have actually had it starting since the age of 18. I am now almost 60. Only took Tecfidera briefly as it caused hypoglycemia. No changes on MRIs done yearly and to this point no severe disabling- only intermittent numbness/pain/fatigue.

I am wondering how best to have work up done to evaluate MS vs T1D neuropathy vs sacral lumbar issue...Thanks so much for your insights.

Answer:
It should be fairly easy to differentiate MS related sensory symptoms from diabetic neuropathy or lumbosacral polyradiculopathies (Lumbar canal stenosis, for instance). Remember, Multiple Sclerosis does not affect the peripheral nervous system which is the source of symptoms in people with either diabetic neuropathy or lumbosacral nerve root compression or injury. Peripheral nerve disease or injury can be evaluated with nerve conduction studies and electromyography, a procedure commonly performed by neurologists specializing in neuromuscular disease. The next step would be to see this type of specialist.

Good luck

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

Here is My Question:
I have MS and had fillers in my face 8 weeks ago. She hit a bone or nerve with one. Since then l have been on antibiotics for 3 weeks but my face is aching from eye to jaw. Also I have the cold/ burning down that side. I usually get symptoms on that side but only for a few days. This has now been 2 weeks and cold and wind make it so much worse.

Answer:
Hello
Your message does not specifically state a question. It sounds like you underwent minor plastic surgery ("Filler") and now have an infection with pain. Please contact the physician who performed the procedure on 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:
What are the possibilities and effectiveness for the new DMT “BTK inhibitors” being developed? Are there any studies that someone in San Diego might be able to sign up for? For those already on BCell depleters like Rituxan or Ocrevus, would they eventually be able to take a BTKi? How far off do you think we might be in seeing this drug come out?

Answer:
BTK, which stands for Bruton Tyrosine Kinase, inhibitors are a promising new class of treatment capable of regulating B cells and microglial activity in the central nervous system without depleting or destroying these cells. There are many phase III studies underway for both relapsing MS, Secondary Progressive MS and Primary Progressive MS. Preliminary phase II studies in relapsing MS showed significant effects on MRI activity and no unusual or serious safety concerns. Phase II studies are required before moving on to phase III studies which determine the clinical effectiveness and  safety of a drug in a larger number of people with MS.
Tolebrutinib, a BTK inhibitor made by Sanofi, is furthest along in development with results possibly available in 2023. 

UCSD is recruiting relapsing patients for a trial of Evobrutinib (a BTK inhibitor made by Merck) and  progressive (both secondary and primary) patients for trials of Tolebrutinib.
If you go to the Clinicaltrials.gov web site you can look up any MS clinical trial and find out how to obtain information on possible participation and the location of study sites.

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

#multiplesclerosis
#BTKinhibitor
#DMT

Here is My Question:
I want to get a lip piercing but not sure if my skin will be able to handle it.

Answer:
I wish I could help you answer this question. I can tell you that MS will not affect the ability of your skin to repair itself after trauma, surgery, or piercing. However, certain treatments like recent or current corticosteroids or immunosuppressants can affect healing.

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

Here is My Question:
Hello, I just turned sixty and have had MS for 35 years or so took Avenox and stopped it for extreme flu like symptoms, then took Tecfidera for 8 months or so then stopped it for fear of PML. Just had an MRI that showed little activity (inflamation) is what one neurologist calls it. He wants to repeat MRI in 6 months and perhaps treat then if needed while another neurologist. I see occasionally says I should treat! My question is : How should one make a decision on either or? Thank you in advance for any input you may have have on this subject .

Answer:
Your decision hinges on what is being referred to as, "a little activity", on your MRI and over what time interval this "activity" occurred. MRI activity decreases with each decade, particularly in those with stable MS without progressive disease by the age of 60. 

You need to have an expert independently review your MRI scans to determine if there is really any ongoing MS activity. If there is doubt, then staying off treatment and repeating your MRI in 6 months is reasonable, particularly at the age of 60. 
​
You also need to have a full discussion of your concerns with your neurologist since they are the only ones capable of providing a fully informed opinion based on your history and examination. For instance, we have no information about your disease course, level of disability, risk factors for disease progression or other medical conditions. All these factors are important to treatment decisions. 

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

​#multiplesclerosis

Here is My Question:
What do you know about the EMBOLD A188 trial and it’s promise of demyelination? How far off might we be? Any chance to be included in the phase 3?

Answer:
EMBOLD is currently recruiting patients for the phase 2 portion of the study. UCSD is a clinical trial site for this study. Follow the link pasted below to learn more about the study and to contact Atara Biotherapeutics about a study site near your residence. If you live in San Diego County, UCSD is one of the study sites for the EMBOLD study. You need an appointment with either me or Dr Jennifer Graves to be evaluated for this study. The main entry criterion is progressive multiple sclerosis and age less than 61.

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'm seeking financial resources that could help with cost of building an entry ramp in BAY Area, CA​

Answer:
I would reach out to the National Multiple Sclerosis Society patient assistance program for starters. If you see an MS specialist at an academic center, reach out to their social worker for community assistance programs.

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 have MS and abnormally low iron levels

Answer:
Multiple Sclerosis and Iron levels are unrelated. Therefore, both may occur at the same time. 

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:
WBC count is 2300. Hip fracture 8 months ago resulted in 3 pins inserted in bone. I am very thin and my doctor said I might need them removed eventually because they cause pain in thin people. I am having MS symptoms - pseudo exacerbation. Could this be the cause?

Answer:
If I understand you correctly, you are experiencing pain at the hip fracture site and a pseudo exacerbation related to the pain. This is certainly possible since hip pain or any lower limb pain can dramatically increase spasticity and spasms and worsen mobility. If this is the case, see the orthopedic surgeon to determine the source of the pain.

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:
RRMS diagnosed age 14 immediately following onset. Treated with Rituxan x 3.5 yrs, full health, then switched to Ocrevus age 18 yrs in 8/21. Soon began chronic infections for months, advanced severe bacterial and COVID pneumonia. Now completing IVIG and recovering. 1) How now to manage MS? 2) lower dose/Rituxan/Kemsimpta, other DMT? 3) can I consider no DMT for at least a period of time to restore my immune system? 4) any suggested dietary plan- Best Bet? Thank you!

Answer:
Not knowing the details of your case, let me provide some information so you can ask your neurologist (MS specialist) some important questions.

1. You are very young and already immunosuppressed. But because you are young, your immune system will be restored over time. After prolonged repeated rituximab and ocrelizumab treatments, this repletion of your immune system can take several years. 
   Your physicians can monitor your B cell subsets to determine when they are repleted. It will be important to know when central memory B cells and Plasmablasts begin to return. ARUP (a commercial lab) has a nice B cell subset analysis panel that can be used for this purpose
2. Ask your physicians to consider continued immunoglobulin replacement therapy until your IgG levels remain normal; 
3. One option for treatment that may help control viral infections and benefit your MS is  Beta-Interferon. There are many brands available including long acting Pegylated Interferon. These are all administered by subcutaneous injection. The Beta Interferons are still quite useful treatments for MS but may cause flu like side effects when started. The side effects can usually be controlled with acetaminophen and ibuprofen. If you do start a Beta Interferon therapy, make sure your physicians monitor you closely with repeated MRI scans beginning 3 and 9 months after starting treatment. If your MRI scans are stable at 9 months, you can lengthen the interval between scans.
4. Most of the other treatment options may lower lymphocyte counts to an unacceptable level, which is to be avoided in your immunosuppressed state. You can reconsider these options with your physicians after your B cells subsets and immunoglobulin levels are both repleted.

Good luck . See what your doctors think and work with them to find a good solution.

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:
I'm taking Tecfidera and have no issues so far but I'm expecting supply disruption that can take up to 1 week, now my question is am I going to experience any issues when I get on the tablets again? Thank you

Answer:
It is possible that some of the initial side-effects you experienced when first starting Tecfidera may reappear after restarting Tecfidera a week later, but these should be minimal and resolve quickly if you are not having problems now.

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 chronic inactive lesions still cause problems and can these problems get worse? My balance is getting worse as are my eyes. Thanks

Answer:
There is no sure way at present to differentiate chronic inactive from chronic active MS lesions during life with a tissue biopsy. These terms are pathological descriptions without a definite correlate on MR imaging. That said, there are many ways for MS to progressively worsen in those individuals who do not appear to show any changes on MR imaging over many years.  Examples of ways in which MS can worsen over time despite no change on standard MR imaging of the brain or spinal cord include the following:

1. Progressive demyelination and axonal injury in the spinal cord. The spinal cord, particularly the thoracic spinal cord, is difficult to image and detect enlarging or new lesions during the progressive phase. Accurate measurements can usually detect atrophy of sections of the spinal cord, but this is not done in standard practice.
2. The demyelination is occurring in the cerebral cortex. Demyelination in the cortex is not visible at all with standard imaging techniques
3. The worsening is due to progressive axonal transaction or energy failure in chronic lesions on MR imaging. This often takes years to become visible
4. The worsening is due to widespread synaptic or axonal injury in gray matter or white matter networks that appear normal on MRI
5. The worsening could be due to the normal aging process superimposed on prior damage from MS. Remember, our brains normally atrophy at a rate of 0.1 to 0.2 percent per year in health individuals. If there is already damage from years of MS, this further rate of "normal" age related atrophy will become more apparent because of exceeding the threshold of neurological reserve.

I'm sure I could think of other reasons, but these are the most important. Some people take an over-the-counter supplement, Alpha lipoic acid (600 mg twice a day), to help prevent further injury and deterioration from inflammatory stress in the nervous system. There are some very preliminary studies suggesting this may be helpful.

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:
I stopped using Butrans patches for scoliosis pain 3 weeks ago. My leg strength and mobility have really deteriorated. Will this pass? Is there a connection?
Thanks.

Answer:
You should direct this question to your neurologist. He will know the strength of your prior Butrans patch, other medications that may be contributing to your sense of weakness and the reason you needed such a strong narcotic for pain. This will go a long way to answering your question. 

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