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Welcome to the Virtual MS Center!

Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
CLICK HERE TO ASK YOUR QUESTION!

I'm having a lack of response to therapy and trying to figure out what to do next?

12/30/2021

0 Comments

 
Here is My Question:
I have had 2 rounds of Lemtrada.
I responded well after the first round. I have regressed 1 yr after round 2.
Loss of strength, foot drop, spasticity.
No new lesions shown in recent MRI but limp and discomfort are obvious.
We are discussing either a 3rd round of Lemtrada or a different DMD.
I have been on Avonex and Tecfidera previously.
We had thought Lemtrada would slow my progression but it has not.
Contemplating stem cell.

Answer:
There are many reasons for a lack of response to immunotherapy in MS, but a very common reason is lack of anticipated response. By this, we mean that the individual on therapy is either in a progressive phase of the disease or over the age of 55, an age generally associated with a diminished response to currently available DMTs.

HSCT is most effective and currently justified in ambulatory, relapsing MS patients under the age of 45 with evidence of activity (relapse or MRI) in the prior 2 years despite highly active DMTs.

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

If my ms is stable why has my walking deteriorated?

12/30/2021

0 Comments

 
Here is My Question:
If my MS is stable why has my walking deteriorated?

Answer:
​There are many reasons for people with MS to experience worsening ambulation that are not necessarily related to disease activity. Here are some common examples:
  1. Worsening spasticity due to colder weather, urinary retention, constipation or pain
  2. An undetected or chronic infection, usually of the urinary system
  3. Poor sleep with increased daytime fatigue
  4. A co-morbid condition medical condition (e.g. arthritis, spinal spondylosis or disc disease, diabetes, lung disease, heart disease, peripheral vascular disease)
  5. Peripheral vestibular dysfunction
  6. Medications
  7. Age related degeneration in the setting of prior damage to the nervous system from years of MS
Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
0 Comments

Can Kesimpta use cause hair loss?

12/30/2021

0 Comments

 
Here is My Question:
Can Kesimpta use cause hair loss?

​Answer:
Kesimpta is not reported to cause hair loss or expected to cause hair loss

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

What’s the latest on people with B cell depleters (rituxan) and COVID vaccines, and what about Evusheld?

12/30/2021

0 Comments

 
Here is My Question:
What’s the latest on people with B cell depleters (rituxan) and vaccines? I had th J&J shot and then a booster. Do I need a third? Also what’s the MS neurology opinion on Evushield or other monoclonals? Can we access? And if so what’s the timing recommended?

Answer:
People with MS who are receiving treatment with S1P modulators (Gilenya, Mayzent, Zeposia, Ponvory) and lymphocyte depleting agents (e.g. rituximab, Ocrevus, Kesimpta, Lemtrada and Mavenclad) may have an impaired antibody response to COVID19 vaccination. Whenever possible, vaccination should be completed prior to commencing therapy or after stopping the DMT for a time interval that is dependent of the specific therapy. You should never stop any of these DMTs, even briefly, without first discussing the safety and advisability of doing so with your MS specialist. Decisions regarding the timing of vaccination and altering treatment are highly complex and depend on your MS risk factors as well as your risk of severe COVID19 infection.

Per press release, AstraZeneca's Evusheld (tixagevimab co-packaged with cilgavimab) is a long-acting antibody (LAAB) combination with emergency use authorisation (EUA) in the US for the pre-exposure prophylaxis (prevention) of COVID-19. Availability is expected to be limited.

The Food and Drug Administration (FDA) granted the EUA for Evusheld for pre-exposure prophylaxis of COVID-19 in adults and adolescents (aged 12 and older who weigh 40kg or more) with moderate to severe immune compromise due to a medical condition or immunosuppressive medications and who may not mount an adequate immune response to COVID-19 vaccination, as well as those individuals for whom COVID-19 vaccination is not recommended. 

Stay tuned for more information.

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

Will Kegel exercises improve my bladder incontinence?

12/30/2021

0 Comments

 
Here is My Question:
Will Kegel exercises improve my bladder incontinence?

Answer:
Kegel or pelvic floor muscle exercises can help diminish urge incontinence by inhibiting bladder contractions. These exercises are a staple of treatment for those with neurogenic bladders, particularly younger individuals. Additional treatments are often required as well, including timed urination and defecation, eliminating constipation, limiting fluid intake during certain times of day and often the addition of appropriated dosed medications.

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

Can people with multiple sclerosis take collagen?

12/30/2021

0 Comments

 
Here is My Question:
Can MS patients take collagen?

Answer:
There is no know problem with MS patients taking collagen or amino acid supplements

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

Are there any cosmetic laser therapy procedures that should not be used on someone with MS due to their use of heat?

12/13/2021

0 Comments

 
Here is My Question:
Are there any Cosmetic laser therapy procedures that should not be used on someone with MS due to their use of heat?

Answer:

Not that we are aware of at this time.

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

Am I increasing my risk of skin cancer by exposing myself to laser hair removal?

12/13/2021

0 Comments

 
Here is My Question:
I have been on fingolimod for 3 years and I know there is a risk of having skin cancer as a side effect. My question is that I am thinking of getting facial hair removal that uses/sprays laser to my face. The question is am l increasing the risk of skin cancer by exposing my skin to laser; also I live in a very sunny place. So exposure to both will or will not cause or contribute to skin cancer, l do not know. What is your advice?

Answer:
There is no data available that could answer your question. The risk of skin cancers is higher with many of the immunotherapies used for treatment of inflammatory diseases. I have no knowledge of hair removal procedures contributing to this risk in any manner. The risks are very low to begin with and totally eclipsed by the risk of excessive sun exposure.

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

Are black holes associated with neurological issues other than MS?

12/13/2021

0 Comments

 
Here is My Question:
Hi, I was diagnosed with MS in 2018. I had a negative spinal tap so it was a long road of ruling out other possibilities. About every 3-4 months I ended up having a hug episode of denial were I have to do a bunch of research and review my MRIs over and over and try to explain away my symptoms. It is excruciating. I finally told my neuro the other day and she is going to test me for MOG as one last rule out. After looking into it, I read that it is mostly associated with optic neuritis and transverse myelitis but I’ve had neither.

I do have 2 spinal cord lesions and several periventricular lesions, cortical lesions, and lesions in and around the corpus callosum. No intratentorial lesions or cerebellar lesions. I don’t have mobility issues so I think that’s my biggest thing. I also don’t have the usual relapses or suddenly having to go to the hospital and have never had enhancing lesions. I also have black holes on T1 for pretty much all of my brain lesions. I have some mild atrophy too. I have cognitive issues causing me to be on disability and a terrible MS hug pain unless I take trileptal. I have mild nystagmus and a significant tremor. I also have some occasional incontinence. Very bad cold intolerance. And other things. My MS specialist says mine is mold and definitely not primary progressive.

Anyway, what would the differentials for those findings be? Are black holes associated with other neurological issues? Are black holes and white matter lesions like this ever a normal finding? Have you ever seen people not have usual relapses but just have accumulating slow progression in symptoms and no walking issues? Have you ever had an MS patient never have enhancing lesions or optic neuritis?

I’m just looking for differentials to consider if any to discuss with my doctor and wondering if these are ever “normal” to see on an MRI.

P.S. I’m a Nurse Practitioner

Answer:
You raise some very good questions about MS diagnostic criteria. Let me touch on a couple of points and show you where many physicians make mistakes in the interpretation of diagnostic data.
  1. The concept of "black holes" emerged as a description of an MRI lesion appearance observed in some MS patients using a 2D (2-dimensional) spin-echo sequence. This was a common imaging sequence used for years on all MRI scanners with imaging usually done before and after the administration of contrast (gadolinium). Several years later it was discovered that if an MS lesion appeared persistently (> 6 months) black on this sequence, the area showed evidence of persistent scaring and tissue destruction when looked at under a microscope. More recently 2D spin-echo sequences have been supplanted by 3D gradient echo images which provide improved tissue resolution with faster imaging time (translation: the radiologists can scan more people and make more money ). Unfortunately, many if not all MS lesions tend to look black on the newer 3D gradient echo images, even though this "black" appearance does not necessarily indicate permanent tissue damage. Many neurologists and radiologists do not understand this problem and refer to these lesions as "black holes", which is clearly a misuse of the term. If you look at your MRI scans or the report, they should list the T1 imaging sequence used. If it is one of the 3D T1 gradient echo images, the two most common are called SPGR and MPRAGE. 
  2. Spinal fluid does not have to be abnormal or show the presence of oligoclonal bands for a diagnosis of MS. If this was the case, everyone would have their spinal fluid analyzed to make a diagnosis of MS. In fact, a study in 2017 suggested that spinal fluid oligoclonal bands are mostly observed in people with MS who display Type I pathology, whereas those with Type II or III pathology more commonly do not have CSF oligoclonal bands. The pathology type refers to different mechanisms of injury observed on microscopic analysis of MS brain tissue.
  3. lastly, typical MS appearing lesions in the spinal cord, especially when multiple, tend to be very specific for MS when other diagnostic possibilities are eliminated.
Remember, it is generally a good thing not to have typical relapses and typical disease progression with MS. Many patients with more subtle "silent" symptoms do very well over time with a remarkably benign course.

I hope this information helps.

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

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