mail2

NMOtion Blog

Discussing NMO Research and Advocacy

What is the comparison of a mild attack and a severe attack?

Dr. Bruce Cree: I think we’ve probably all experienced this now. When we first were dealing with patients who had Devic’s or NMO, we used severe optic neuritis, severe acute transverse myelitis where there was loss of motor function and eventually loss of bowel and bladder. Now we realize there can be relapses, particularly in the setting of treatments that are not as severe as the attacks that we typically have associated with the disease. For example, a patient could have pain or loss of sensation in an area and then imaging of the spinal cord will reveal a contrast sensing lesion with Neuromyelitis Optica. So you may not have any motor impairment and normal bowel and bladder, just some changes in sensation and that can be a flare. We have seen with serial MRI, in one patient in particular, there can be evident inflammation in a setting even without any active symptoms. We are still in the process of learning more and more about the disease. If you have a new symptom that has come on that really lasts for more than a day and it’s something different from what you really experienced before, that type of thing, whether it be a sensory change motor weakness or change in bowel and bladder or change in vision, they need to be evaluated by your neurologist. If you are getting those sorts of things it’s probably feasible to consult with your neurologist, get examined.

Is there anyone working on a way to get back what has already been done? For instance, being blind in one eye?

Dr. Benjamin Greenberg: I think it’s being worked on potentially. There are multiple avenues. We talked about prevention. Once you are diagnosed with the disease, you undergo therapies. The overall flavor of your question is on regeneration from damage. The regeneration is going to take two flavors. One is research being done in cell based therapies, stem cell research. And the other avenue is molecule drugs that would promote repair. There is research being done on both. For example, if somebody’s optic nerve has the wires intact, but the insulation gone, so the myelin gone, this term is demyelinating. The wire is intact-there is actually tremendous hope. That is a great target for stem cell therapy. Between the optic nerve and the spinal cord, the optic nerve is a great place to go. It’s accessible, minimally invasive. What we are starting to do is imaging studies to separate out patients who have intact wires, but damaged insulation. They are going to be great candidates for these therapies versus ones that might need more extensive repair. On the small molecule side, there are a couple of acts moving to Phase 1 clinical trials where the actual drug helps grow new myelin. These are things that are really no longer scientific functions. We are partnering hard trying to get our patients ready and keep them ready, hard on the prevention side. We don’t want new damages for individuals talking about spinal cord issues. Same question about regeneration. We are talking with everyone to make sure you are exercising- make sure you are active, make sure there is nothing wrong with joints or muscles. When I go to repair a spinal cord, we have to have something to correct to. You have to do your part as much as possible to stay healthy while we are doing our part to get the therapies. That would be my approach.

Leave a Comment

  • Learn About
    Clinical Trials

    Learn how clinical trials work, whether or not you're eligible to participate, and the possible risks and benefits.

  • Advocate

    A disease is not rare if it affects you, so get the resources you need to join the community and get NMotion to solve NMO!

  • Give Blood

    If you know someone who has been diagnosed with NMO, please help us with blood samples and/or clinical data donations to our Biorepository.

The Power of Rare.

Power of Rare Book Cover

Victoria Jackson’s new book, THE POWER OF RARE: A Blueprint for a Medical Revolution, shares how a revolutionary model was created to speed discoveries that help empower patients and save lives.

No Thanks