Here is My Question:
My friend has had MS since September 2016. He is complaining of dizziness, blurred vision, and fatigue. For the blurred vision, by evening his vision gets better.

His doctor prescribed Plegridy, one Pen (injection) in a month, in two intervals i.e. every 15 days. He got the injection today in his thigh, and after that he got a fever, took medicine for the fever, was ok after that, then suddenly he complained he cannot see, he has lost his vision. He cannot even read text messages, and also cannot recognize the person who is standing front of him.

I want to know, is this a normal side effect? Why has he lost his vision? For how long will this side effect occur? Will this happen the next time he gets an injection? Can he discontinue the injection once started? Please advise.

Answer:
Vision loss is not a known side effect of Plegridy. I strongly recommend your friend see an ophthalmologist as soon as possible to figure out why he or she lost his/her vision.

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:
Why did my doctor put me on Copaxone and not Tysabri? Is it because Tysabri is more for patients with sever MS? 

Answer:
It would be impossible for me to guess why your doctor prescribed Copaxone instead of Tysabri:

Glatiramer acetate (either Copaxone or Glatopa) is a reasonable option for someone with early relapsing MS with few risk factors for significant disease activity or disease worsening over the next 3 to 5 years and does not mind self injecting themselves 3 times a week.

Tysabri is a highly active disease modifying therapy appropriate for initial treatment of people with relapsing MS in whom the potential benefits of treatment outweigh the risk of PML and other potential complications. This is definitely true of people who are JC virus antibody negative and in certain people who are JC virus antibody positive who have significant risk factors for disease activity or disease worsening in the next 3-5 years.

When you asked whether Tysabri was for people with “severe” MS, this greatly depends on your definition of severe; for instance, if your definition of severe means that the person is already significantly disabled, then Tysabri may not be the most appropriate treatment at that point in time. People with severe disability (for instance, wheelchair bound) have often experienced MS for many years already, if not decades, and typically have a progressive form of the disease. Tysabri may not help this type of person with MS. On the other hand, people with risk factors that suggest they will experience significant worsening in the next 3 to 5 years if they are not treated more aggressively are ideal candidates for Tysabri, especially before they develop significant disability.

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:
Do you gain weight on Ocrevus? If so how long after the treatment?

Answer:
​Weight gain is not a reported side effect to Ocrevus.

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

Here is My Question:
Does Aubagio increase anger and mood swings? My wife was taking Rebif for 8 years and seemed irritable at times. Last year she stopped Rebif for about 12 months and was a joy to be with. Since beginning Aubagio 3 months ago she has returned to being extremely irritable, angry and moody. Please help me.

Answer:
Depression can be aggravated by interferon-beta (ie, Rebif) but this is not reported/suspected with Aubagio. There is an increased risk of depression in patients with MS in general which could also explain your observations. I would suggest that you both speak with your neurologist about the issue for potential causes and treatment if appropriate.

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

Here is My Question:
My husband has MS and is on Gilenya about 5 years and feels good. He has been in a wheelchair 8 years. The doctor saw lesions on the MRI wants him to switch to Ocrevus a new infusion. We are concerned about getting more lesions during the washout phase. This happened when he switched from Tysabri to Gilenya 5 years ago he washed out for 5 months and got real sick and 7 lesions. But the Gilenya was better. If there are no new lesions for 5 years but some new activity is on the MRI now should he switch to Ocrevis now or wait and see for a while? We understand no medicine is 100%. Does this mean the Gilenya has stopped working or is this to be expected?

Answer:
It can be very difficulty to interpret changes on MRI scan in people with longstanding MS and significant disability (for instance, being wheelchair bound).  If repeat MRIs are not obtained and analyzed correctly, neurologists and radiologists may mistakenly interpret scans as active when the scan is, in fact, stable and vise-versa.  Therefore, I find it very difficulty to answer this type of question without personally reviewing the MRI scans and knowing more about the person.

I agree with you on the wash out period. If you switch wait no more than a month between stopping Gilenya and starting Ocrelizumab 

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:
Can MS cause increased sex drive and increased vaginal sensitivity?

Answer:
MS can occasionally lead to disinhibited behavior (i.e. doing things that are out of character for a person and considered socially inappropriate by others), but I would not refer to this as, “increased sex drive.”

Women with MS can experience vaginal and clitoral sensitivity that is more often than not unpleasant; very very rarely, this can lead to spontaneous arousal and even orgasm.

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:
Why did my doctor put me on Copaxone and not Tysabri? Is it because Tysabri is more for patients with severe MS? 

Answer:
Treatment choices are made for a variety of reasons and are personalized to the patient. Tysbari can be used in patients with mild, moderate or severe MS based on their profile, their personal preference and risk factors. There are no ‘hard and fast rules’. We encourage everyone to discuss all treatment options with their providers.
 
Benjamin M. Greenberg, MD, MHS
Vice Chair of Translational Research and Strategic Initiatives
Cain Denius Scholar of Mobility Disorders
Distinguished Teaching Professor
Department of Neurology and Neurotherapeutics
Department of Pediatrics
UT Southwestern Medical Center
Dallas, Texas

Here is My Question:
http://www.thisisms.com/forum/coimbra-high-dose-vitamin-d-protocol-f57/topic27182.html

Please post regarding this Coimbra high dose Vitamin D protocol. 95% shut down activity seems really great. Why isn't this talked about more? Or is this another vein surgery gimmick?

Thank you so much for this website and the help you all provide.

Answer:
Recommendations for Vitamin D3 supplementation in MS patients will remain unchanged until further studies are completed. 

Generally, most MS specialists continue to recommend 2,000 IU to 10,000 IU daily in order to achieve a total 25 hydroxy (OH) Vitamin D level between 40 and 60 ng/ml (same as 100 to 150 nmoles/lt). It may be more beneficial to achieve higher levels but this is not yet proven.

It should be noted that Dr. Coimbra has published no studies on his high dose vitamin D protocol involving MS patients.

There are however, numerous Vitamin D studies underway in Europe and the United States, so stay tuned.

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 don’t know where to turn. Insurance has left me in a pickle. My MS DMT went out of network. There are only two doctors in my town - neither of which have their thumb on the pulse of MS. Trying to get an appointment at a group in the next town over. In the mean time - I feel like I am declining. Had steroids back at the beginning of November due to a loss of peripheral vision on the right side of my right eye. Not really documented by an ophthalmologist. He just looked and said your retina is fine. Go to your neurologist. Neurologist ordered 3 days IV steroids. Didn’t touch the vision issue at all.

Today it is worse. Now involves lower peripheral vision on right eye. I don’t know what to do. My optometrist has done a few OCTs and there is evidence of damage to both eyes. Currently taking Betaseron. Only for two months. Have tried copaxone and rebif.

• How often is too often for steroids? I’ve been diagnosed over 4 years. I’ve done acthar three times, third time didn’t work, and steroids twice.
• Is there a danger in not doing steroids for eye issues? Or is this just causing more damage?
• Do I need to be seeing an ophthalmologist?
• I am really interested in Lemtrada. I feel like I have no real clinical team anymore.
• Is there a particular med that is more beneficial for patients with eye issues?

SoconfusedandworriedinSC


Answer:
This is tough to answer as I do not feel comfortable giving medical advice on any particular patient without seeing him/her first.
​
However to answer some of the questions:

in general, steroids are not required for treating optic neuritis as they only speed up the time for recovery of the vision loss.  If the vision loss is going to recover, it will do so with or without the steroids (the steroids just hasten the speed of the recovery).

You clearly need to find a new neurologist who is specialized in MS and may need to expand the scope of where you can travel.  Lemtrada seems like a reasonable option to consider but you would need to discuss if you are an appropriate candidate with an MS specialist.

In the meantime, if you do feel like your vision loss is getting worse, I recommend you see an ophthalmologist again to make sure it is only the MS/optic neuritis affecting your vision and not some other treatable condition that is being missed.

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:
What's the best medication for nerve pain and one with less side effects? I have tried Lyrica, Neurotin, Cymbalta and am tapering off Amitriptyline due to weight gain.

Answer:
There are many approaches to the management of chronic neuropathic pain (nerve pain) but none of them involve only the use of drugs which, as you’ve found, are at best partially effective.

I find that a combination of mindfulness training, gradually increasing activity, judicious use of pharmacological agents and perhaps medical marijuana, if available to you, are particularly effective. 

Pharmacological agents include those you mentioned and additional medications all well known to neurologists and pain specialists. While you search with your neurologist or pain specialist for a medication that helps take the edge off the pain, also start looking into the other therapies I mentioned. There are even mindfulness training classes on line.

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:
Are T-1 Hypointensities Specific for MS?

I’m currently going through the diagnostic process and had my second MRI on a 3-T machine. This set of scans showed more lesions than the first but none were enhancing or specific.

Out of 12 lesions that I found on my scans (report didn’t quantify them) I do have three lesions that show as hyperintense in T2 and FLAIR and hypointense on T1. They’re clear as day but the report didn’t mention any hypointensities outside of the automated Neuroquant/Lesionquant software used so they weren’t included in the impression. 

If these are indeed black holes (and they’re so obvious I don’t see how they’re not!), does this make it more likely to be MS? I can’t find a lot of information about other causes of black holes outside of multiple sclerosis. 

Answer:
The simple answer is to your question is no.

"Black Holes” are circumscribed dark (i.e. dark gray to black) areas within the white matter of the brain that usually correspond with a white area on FLAIR imaging. If the image that shows the “black hole” is obtained with a standard 2D T1 weighted image, it means that the underlying tissue matrix is severely disrupted as long as this region did not form as a gadolinium enhancing lesion in the prior 6 months. This is because new lesions that are enhancing often appear initially as a “black holes” in the scans without contrast but this dark area will resolve in most (> 60 %) within 6 months. A repeat scan 6 months or more later will then show  only a white spot on the FLAIR image with normal appearing brain on the 2D T1 weighted image.

Now this issue gets more complex with the 3D T1 weighted structural images that are used to measure brain volumes with NeuroQuant, LesionQuant and other image analysis programs. These 3D T1 weighted imaging sequences with names like MPRAGE and SPGR show many of the MS related white spots on FLAIR images as dark areas, even when they are not, “Black Holes”. This becomes more noticeable at higher MRI field strengths like 3 tesla (3T). Physicians and Radiologists not completely familiar with this phenomenon sometimes misidentify "black holes” using these 3D T1 weighted images that are not really present on standard 2D T1 weighted images

Hope this helps.

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 was recently diagnosed with MS. The plan was to apply to nursing program this March. Now that I'm newly diagnosed do you think it's still a good idea to still apply?

Answer:
Discuss this with your neurologist.  Quickly getting on an appropriate disease modifying therapy can help keep the disease in check so you can pursue your career goals.  

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

MS could produce similar symptoms (called paresthesias or sensory illusions).  Other conditions could theoretically cause these symptoms as well (peripheral polyneuropathy, plexopathies, etc).  A neurologist can help differentiate Among the possibilities.
ASN

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On Jan 26, 2018, at 3:01 PM, Chris Granfield <[email protected]> wrote: