Here is My Question:
I was diagnosed with Transverse Myelitis years ago (several lesions in cervical and thoracic cord; elevated CSF IgG, WBC, and protein but no oligoclonal bands. Brain MRI was normal. I had almost a full recovery.

For the past several weeks, my legs/feet have redeveloped a cold, burning sensation that can be pretty intense and often feel as if they are vibrating which I find very distracting. I am very fatigued as well and nap a lot. My reflexes are very brisk and I have ankle clonus. My PCP ordered a repeat MRI which shows 3 areas in the cord that appear to be where I had prior lesions without any enhancement. I have not had a repeat brain MRI since the initial event.

It will be weeks before I can get in with Neurology. I have been prescribed baclofen, but hesitate to take it because I am already so fatigued. Should I be concerned about MS at this point? Could the MRI have missed lesions given the lapse in time (almost 3 months) since my symptoms returned so consistently? I cannot think of a trigger for this, except I did get a flu shot in early October.

Answer:
Assuming the initial diagnosis of transverse myelitis is correct (and I do not see any evidence to the contrary), then it is likely that you are experiencing a recrudescence of symptoms due to the prior scarring from the initial injury. Once the injury occurs, the scars remain and can bring out symptoms from time to time. Baclofen can be used to help relax the muscle and can help with the clonus; however, that may not be worth the trade off with side effects as you point out (more fatigue).  

​The only way to answer the question about a brain MRI is to be evaluated in person and examined with the neurologist. (If your spinal fluid had an elevated IgG index rather than IgG, then it may be reasonable to repeat the brain MRI as the IgG index rather than IgG level can indicate a predisposition for recurrent inflammation in the central nervous system.)

The baclofen is unlikely to help much with the sensory disturbances you are experiencing; however, other symptomatic medications (such as gabapentin, elavil, etc) could help.  

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

Here is My Question:
Can MS Lesions Start in the Subcortical White Matter?

I had an MRI done and the report mentions numerous foci of T2 hyperintensities within the subcortical frontal lobes bilaterally. The differential diagnosis’ were migraines and vasculopathy as the lesions are not considered a classical presentation of MS. 

I do not suffer from headaches, and certainly do not get migraines. I also do not have risk factors for cerebral vasculitis. 

I do have symptoms of MS, as well as atrophy of the optic nerves confirmed via an OCT Scan. 

My question is, is it possible that MS demyelination can start in the subcortical white matter before damaging periventricular, juxtacortical and other areas that are so common for MS? 

Answer: This is an excellent question and one that many researchers have been trying to answer since high field MR imaging became available for research purposes 15 years ago. There are basically two issues to surmount:

1. The first issue is finding people with known susceptibility to MS, but without any areas of demyelination on imaging. These people then need to be monitored longitudinally for the onset of the disease, which is usually asymptomatic and only visualized by serial MR imaging. You need to find a group of patients with a relatively significant risk of MS, say 20 to 30 %, for this purpose. This should be possible in the future as several research groups hone in on MS risk factor identification.

2. The second issue is using an imaging technique that allows the researcher to visualize both the gray and white matter of the brain. The problem with standard MRI scanners used at present for most clinical purposes is their inability to visualize demyelination in large areas of the brain, particularly the cortex and gray matter. Therefore, you can only visualize what the technology allows you to see, which is demyelinating affecting the white matter tracks. High field imaging with 7 tesla magnetic fields allows us to visualize demyelination in the cortical surface as well as the subcortical white matter (this would include the periventricular white matter). There are suggestions from these studies that MS may begin in these cortical structures, or more precisely, may begin in areas adjacent to spinal fluid and meninges (such as periventricular white matter or the surface of the brainstem and spinal cord) but this is by no means confirmed. According to this hypothesis we would only see subcortical white matter involvement (as in your case) later in the disease, not early in the disease. 

From a practical point of view, T2 hyperintensities solely involving the subcortical white matter, especially in the frontal lobes, on standard imaging are simply not very specific. These “white spots” are seen in normal aging (people over 40),people with high blood pressure or diabetes or high cholesterol, people with migraine, people with depression and anxiety and the list goes on; there are those who believe that the presence of a central venule in the white spot increases the likelihood of MS, but this has also not been operationalized in a useful manner. This is why radiology reports call these white spots, “non-specific”; they simply do not aide us in the diagnosis of MS.

Revere (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 do not tolerate my Tysabri infusions well, I have been on it for 21 months. My neurologist has talked to me about switching to Ocrevus but I am not sure. I have only been on Tysabri, it took 6 months to get my MS under control and stop having relapses after starting it, so he does not want to put me on anything less potent. My main concern is the increased risk of cancer, specifically breast cancer which due to family history I am already in a high risk category. I also am concerned that in the time between stopping the Tysabri and starting the Ocrevus I may relapse. I should also mention I am JC virus negative at this time. 


Answer:
My usual preference is to continue with Tysabri unless one of the following occurs:

1. It is not working: This does not appear to be the case with you
2. It is too risky: Again, this doesn’t appear to be the case with you. Too risky would mean you are high titer positive for JC virus antibodies and on therapy for more than 2 year or you have a history of immunosuppression
3. It is not tolerated despite efforts to lessen side effects. You mention not being able to tolerate Tysabri but do not mention the specific problem(s) you are experiencing. Problems with infusions can often be handled with premedication and problems between infusion can often be handled by increasing the interval between infusions to 8 weeks. 

If you really can not tolerate Tysabri despite best efforts to lessen side effects (persistent side effects are very uncommon with this treatment), Ocrevus and Rituximab  are great options, if your MS Specialist believes you have a high risk of relapsing in the first 6 months after stopping Tysabri. If you are not in a high risk for relapse group, then Gilenya and tecfidera are also options.

The potential risk of breast cancer on Ocrevus can be mitigated by frequent breast cancer screening starting before you start treatment. We really do not  know at present how to interpret the higher risk of breast cancer observed in the Ocrevus clinical trials. It was unexpected and not observed previously with Rituximab treatment, a therapy very similar to Ocrevus and used since the mid 1990s. The FDA also did not determine that the risk of breast cancer was higher in  Ocrevus treated patients than in the general population, although it would take many more people on this treatment followed for a longer period to time to make this determination.

Please discuss these issues further with you MS Specialist and I am sure you can both make a comfortable decision that meets your needs and addresses your concerns.


Revere (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:
My mother got diagnosed with MS in 1995, she has progressive form of the disease. In 2004 she suffered 4D burns which caused her right leg to face a permanent contracture. She’s currently on two medications i.e Baclin and Citanew.

She’s completely bed ridden; can sit with assistance. Four years ago she started having problems with her short term memory. Psyiotherapy is conducted for the past 8 years. The issue right now is that she’s started developing problems with her speech i.e. she sounds gibberish sometimes although when she talks in a high pitch voice; it’s clear.

Her speech is the only thing that she can communicate with; we’re worried about how to prevent it from further deterioration. Also; someone suggested hal suit 6 might help her with a better life. We live in Pakistan; what do you think? Would purchasing hal suit for her be a better idea? Also; what can I do about her speech? Thank you. 

Answer:
She is not likely to benefit from a Hal suit or any exoskeleton for standing or walking with her severe contractures and long term immobility. When people are bedridden or immobile for a long period of time they develop severe osteoporosis and are at high risk of fractures with prolonged standing .

It is hard to recommend a solution for her speech; she will require an evaluation by a speech therapist to determine if the issue is due to impaired phonation or a central language difficulty.

Good luck

Revere (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:
My first brain MRI was on a 1.5 T scanner and showed two non-specific hyperintensities in the frontal lobe. There appear to be a few smaller foci scattered throughout the brain too it they were not reported on by the radiologist. 

One of my symptoms is transient shaking of both eyes and I believe this may be due to a lesion in the brainstem if I do have MS.

Do you find that 3-T scanners are much better at picking up lesions in the brain than 1.5T? I’ve heard they’re much better at picking up spinal lesions but how about the brain? I need to make a decision as to whether I should have an MRI that’s covered by insurance or pay out of pocket for a better scan. I can afford the out of pocket cost but it’s still a decent amount of money and I’m trying to decide if it’s really worth it. 

Answer:
A 3 Tesla scanner can provide higher resolution images with improved  signal to noise ratio, but the real question is whether improved imaging will alter your diagnosis and the management of your condition. The answer to this question is probably no without a better understanding of the pathophysiology of your visual problems.

If you are experiencing oscillopsia (jumpy or shaky vision) from impaired visual fixation you would benefit from seeing a neuro-otologist or neuro-opthalmologist who is an expert on eye movement disorders; they will be able to determine if additional studies (imaging or otherwise) are required.
Good luck

Revere (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:
Lumbar Puncture After CIS

I had an episode of what appears to be optic neuritis just over a year ago. I have a few brain lesions (small, non-specific) as well.

My neurologist is an MS Specialist and she’s really encouraging me to have a spinal tap. My question is: How likely is a spinal tap to be positive after a clinically isolated event? I do have symptoms dating back a few years but if they’re not due to MS and the optic neuritis was truly the first event is the lumbar puncture worth the risk this early on?

Answer:
The lumbar puncture can now assist in making the diagnosis of multiple sclerosis sooner.

It can be especially helpful if the MRI results were equivocal and the diagnosis is still unclear (90% of patients with multiple sclerosis will have oligoclonal bands in the spinal fluid).

So, if your spinal tap shows no oligoclonal bands it makes it less likely you are going to go on and develop MS; if however your spinal fluid does show oligoclonal bands, that is another piece of information supporting the diagnosis of MS.

The results of the spinal tap may aid you and your neurologist in making the decision as to whether you should start disease modifying therapy (DMT) for MS.

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

Here is My Question:
Does the RC virus mimic MS? I have not been diagnosed with MS but have a positive rcv result.
So can you have a positive result and not have MS or do I have MS with the virus? 

Answer:
I am not aware of any virus called the RC virus

If you are referring to the JC virus, almost all of us get exposed to this virus and it does not cause any specific illness in humans in its native form.

Revere (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'm on Copaxone and ever since I took a flu shot I have been sick cold-wise, do I need more antibiotics?

Answer:
“Colds” are almost always caused by viruses which do not respond to antibiotics. Just let your doctor know and he will give you instructions. Hope you feel better soon.

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