Multiple Sclerosis Center - HealthCare Journey for Multiple Sclerosis

Can you have oligoclonal bands and elevated free kappa light chains in CSF but still not have Multiple Sclerosis?

6/20/2023

Here is My Question:
My spinal tap came back positive on my Kappa free light chain test and also positive on my oligoclonal banding test. Is there any chance that I could still not have MS?

Answer:
You can have oligoclonal bands and elevated free kappa light chains in CSF but still not have Multiple Sclerosis. The positive predictive value of a test usually depends on the pre-testing probability that a person has the disease in question. If your probability of MS (based on history, examination and MRI findings) is low prior to testing, then the test results are far less predictive of this diagnosis.

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

What is the cause of my white matter lesions and how are they determined to be “nonspecific”?

6/20/2023

Here is My Question:
I’m a 34 year old female. I have had extreme fatigue for 2 years (sometimes sleeping 18 hours in a day) and experience regular eye movement problems (daily for 1.5 years now.) My brain MRI from April found “minor scattered nonspecific FLAIR white matter hyperintensities.” I have never consumed alcohol or smoked, have only ever had low blood pressure, and have been vegetarian for 20+ years with no cholesterol problems.

I visited an ophthalmologist who said my optic nerve looks good but my eye problem is a hallmark symptom of MS (it gets worse in the heat) and suggested I see a neurologist. One last thing I’ll mention.. I had severe mono 20 years ago and was curious about my EBV antibodies. Over the last year my VCA igG AB climbed from 463 to 529 u/ml and NUC ag igG has been >600 u/ml. Sorry for the long message and the specificity to my situation.

Questions:
1) What else can I look into for the cause of my WMHs?
2) How are WMHs determined to be “nonspecific” or not?

Any advice would be very appreciated as I’ve been struggling to get appointments with specialty centers. Thanks very much.

Answer:
Very good questions. Let me break up my response into specific points

There are certain very specific symptoms of MS, particularly in a young adult. One is either double vision, transient blurring of vision with rapid eye movement, or difficulty with rapid visual tracking caused by an internuclear ophthalmoplegia, especially when the problem is bilateral (i.e. in both directions of gaze). Other causes of impaired eye movements are also common in MS and are more specific in young people. The fact that symptoms worsen in the heat is also suggestive of MS in your age group. It would help to know if the ophthalmologist detected any abnormalities of eye movements on your examination. If the ophthalmologist was not able to detect a specific problem with eye movements, you may benefit from seeing a neuro-ophthalmologist as well as a neurologist
We use specificity criteria to determine if white matter lesions (WMLs) on MR imaging support a diagnosis of MS. This includes their number, specific location, shape, border characteristics, lesion tissue characteristics using different imaging sequences, the presence or absence of enhancement and the proportion of lesions with a central venule. Non-specific WMLs do not meet the necessary specificity criteria, but it is important to note that non-specific WMLs also do not exclude the diagnosis of MS; it simply means that other criteria must be used to establish a diagnosis including your neurologic history, examination findings, and other testing (evoked potentials, spinal fluid analysis and other biomarkers).

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

Do my symptoms mean I will eventually have MS?

6/20/2023

Here is My Question:
My MRI report shows Encephalomalacia with gliosis also with ex-vacau dilatation in Right Parietal Region extending to peritrigonal region. I have symptoms like seizures, absence, numbness in body, tremors, drowsiness, dizziness, fatigue. Will all this lead to MS in future?

Answer:
Encephalomalacia simply means there is evidence that the tissue matrix and cells has been destroyed or damaged in an area of the brain. When this occurs adjacent spaces in the brain enlarge to fill the area once occupied by the tissue which has disappeared (this is the "ex-vacuo dilatation" mentioned in the report). Gliosis means scaring; on MR imaging this usually appears as a chronic white spot (called a FLAIR or T2 hyperintensity) usually adjacent to the area of encephalomalacia.

None of these terms are specific for any disease state. For instance, these findings can be seen after an injury occurring at birth, a prior infection, prior trauma, prior surgery, chronic multiple sclerosis, a stroke or any number of other conditions.

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

What is causing my tongue to burn, gum disease and nose bleeds?

6/20/2023

Here is My Question:
What could be causing my tongue to burn every time I eat and I also suffer from gum infections and just recently I keep having nose bleeds.

Answer:
Your symptom complex (burning tongue with eating, gum disease and nose bleeds) could be due to multiple different problems (medications, viral infections, systemic diseases) or vitamin deficiency, particularly vitamin C and B vitamins. You need to discuss the possible causes with your primary care doctor so you can initiate necessary testing and treatment.

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

Is it possible that shin splints and foot cramps were an early symptom of my MS?

6/20/2023

Here is My Question:
I have always suffered from shin splints - sometimes just from walking quickly, but definitely when running, so I just don't run for exercise. These splints make it difficult to lift the fronts of my feet until the pain passes. I have also often got cramps in my feet if I am in a certain position and they come on FAST. I was recently diagnosed with benign MS after suffering temporary (months long) blindness in half of my field of vision (both eyes) that began 18 months ago.

MRI's at the beginning of this detected two optic lesions, no spinal lesions. A few months ago, I had another MRI and two new lesions in different spots, had appeared. Is it possible that the shin splints and foot cramps were an early symptom of MS? I find it hard to believe that I ( a 57 year old woman) have had MS and didn't know it - especially given that MS symptoms usually start well before middle age. Perhaps these were early symptoms that I never investigated? Thank you.

Answer:
Chronic neuroinflammatory and degenerative conditions generally emerge over 3 phases:

A prodromal phase during which vague, potentially neurologic symptoms emerge. These symptoms can include bouts of fatigue, intermittent abnormal sensations, odd fleeting pains, muscle spasms or cramps and subtle alterations of cognitive function, to name just a few. Studies in people who experienced optic neuritis suggested years ago that a history of prior "vague neurological symptoms" was a risk factor for the subsequent development of MS (Remember, less than 50 % of people with optic neuritis develop MS). The problem is that these "vague neurological symptoms" are not specific for any particular disorder and often do not justify an extensive evaluation for cause.
An asymptomatic (or relatively asymptomatic) phase of the disease. This would apply to people with radiologically isolated demyelinating syndromes or clinically isolated syndromes . In fact, with current changes in diagnostic criteria this phase may even apply to some early relapsing MS cases
Full emergence of the disease as demonstrated by ongoing disease activity or worsening

Whenever we think in terms of these phases of MS disease process it is important to understand that there is significant overlap. These classifications help us understand the biology of the disease for research purposes and how to identify and intervene therapeutically as soon as possible.

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

research studies to restore function to paralyzed limbs

6/20/2023

Here is My Question:
I have female patient who has had MS complete paralysis for over 10 years now, is age 50 and is not sick nor has any chronic illnesses. Mentally stable, can move her head and shoulders, slightly able to move her chest forward,

Just want to ask if is there anything that could help her move her arms and legs again,

She’s bedridden and utilizing a wheelchair when going out of the house.

Answer:
To my knowledge, your patient would not be a candidate for any current research studies to restore function to paralyzed limbs. Mind controlled interfaces bypassing areas of injury in the spinal cord (so called digital bridges) to volitionally activate gait programs in the lower spinal cord are now possible following spinal cord injury. Other approaches including cybernetic frames to assist residual movement or mind-controlled robotic limbs are also possible.

The main problem with MS is the diffuse injury and damage to the nervous system; there is not a single injury at a spinal cord level in most cases of MS. This diffuse injury makes it difficult, though not impossible, to apply these techniques. In particular assisted activation of movement using attached frames is an area of research using MS patients.

If you find any research group interested in using MS patients for these applications, please let us know so we can post the information for our readers.

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

Are MS Services available remotely?

6/20/2023

Question:
Thank you for generously sharing so much information and knowledge on your website.

I experience oscillopsia/nystagmus (an ophthalmologist confirmed this but said my optic nerve is ok) and it gets much worse when I’m outside in the heat, taking hot showers, etc. This has been happening daily for around 2 years; sometimes it only happens a few times but other days it’s every time I move my head and eyes.
I have also been struggling with severe fatigue, sometimes sleeping for 18 hours in a day on weekends despite my best efforts.
Along with a lot of other tests I had my EBV antibodies checked (had severe mono in high school) and the VCA/igG levels were extremely high. They had increased when I was tested again last month (a year after the initial test.

Are there MS specialty services available remotely for situations like this one? Thank you so much for any information you’re willing/able to provide, and thank you for your time.

Answer:
Regarding telemedicine consultations, these are typically available at most tertiary care centers that have an MS specialist. However, the physician needs to have a medical license in the state in which the patient resides. And of course, the physician will need to have access to the MRI images to review them. Otherwise, the patient will need to travel with the imaging studies to the state where the MS center is located.

Benjamin Osborne, MD
Director, Neuromyelitis Optica (NMO), Neuro-Ophthalmology Clinics and MS/Neuro-immunology Fellowship Director
Associate Director of the NIH/Georgetown Neurology Residency Program
Medstar Georgetown University Hospital

Why does my vision get fuzzy when I get hot?

6/9/2023

Here is My Question:
Whenever it’s either hot outside, inside or heat from the shower or baths and I stand up my vision goes fuzzy and everything goes black and I can’t see or feel my body and I’ll fall and sometimes I’ll just pass out.

Answer:
Blurry vision induced by heat or high temperatures is a well described phenomenon in patients with MS who have had optic neuritis.

This is called Uhtoff phenomenon, named after the ophthalmologist who first described this.
It is not damaging your optic nerve fortunately but if you can cool your body down or avoid high temperatures you should be able to avoid these episodes from happening in the future.

Benjamin Osborne, MD
Director, Neuromyelitis Optica (NMO), Neuro-Ophthalmology Clinics and MS/Neuro-immunology Fellowship Director
Associate Director of the NIH/Georgetown Neurology Residency Program
Medstar Georgetown University Hospital
#multiplesclerosis #Uhtoff #MS #blurryvision