Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I believe there is a blood test for to differentiate devics from MS also called..
Neuromyelitis optica (NMO) is a severe demyelinating disease defined principally by its tendency to selectively affect optic nerves and the spinal cord causing recurrent attacks of blindness and paralysis. Contemporary diagnostic criteria require absence of clinical disease outside the optic nerve or spinal cord. We have, however, frequently encountered patients with a well-established diagnosis of NMO in whom either asymptomatic or symptomatic brain lesions develop suggesting that the diagnostic criteria for NMO should be revised.
http://www.ncbi.nlm.nih.gov/pubmed/16533966?dopt=AbstractPlus
Google it to read more of it....
On an MRI devics lesions are larger than MS lesions
Why are you asking?
Lynn
I checked, I think you can go there. There is a woman with Devics who is very knowledge-able about Devics and the treatment for it. She just has an analytical mind, she really understands stuff more than most patients. She really does! Because Devics is so similar to MS and MS is so much more common she spent much time on MS boards.
She spent time here as Gracie53a.
But I notice her profile is no longer active, She spends time in PLM-Patients Like Me- and still does from what I can see. There her login is GraceM. I just did a search on Devics in PLM and she was still posting.
I believe she also started a Devics Support Foundation, with another Devics Patient. It was a full blown support FOUNDATION, not just a message board. You've got to find her. She will lead you in the right direction.
Here is a link to PLM Devics Community.
http://www.patientslikeme.com/devics/community
You'll have to join PLM, but I'm certain it will be well worth your time!
I hope you find the support you need to find for your Devics. But MS is a good place to spend time too!
Good Luck
Devics meds are stronger, more like what is used with advanced MS, so it was valuable time lost when they were being treated for MS.
Hugs,Owlxxx
My name is Grace. Devic's NMO is an extremely severe demyelinating disease. In the beginning, symptoms often resemble those of MS, thus many patients are misdiagnosed. Roughly 80-90 per cent of patients are relapsing, with the same number being women. The pathology of NMO is much different from that of MS.
Estimates say that within the first five years 50% of patients will already be permanently blind in at least one eye (Often bilaterally.) and paralyzed in at least one limb. (Often more.) Within that same time frame, stats say that as many as 33% of patients will pass during an acute attack as the result of brain stem involvement.
Unfortunately, due to its rarity, many neuros have still not heard of it let alone seen or treated a case. The majority of us end up at one of the larger teaching and researching facilities.
Another unfortunate circumstance, is that many of the supposedly reputable web medical sites still have misinformation posted. You will routinely read things such as: *A demyelinating disease similar to MS which caused paresthesia and occasional optic involvement which always resolves itself.* Nothing could be further from the truth. Also, the now know that a significant percentage of patients will in fact develop brain lesions, though not in a pattern consistent with MS.
Unlike MS, the relapsing NMO patient requires intense immunosuppression, but even then there is no guarantee that relapses will cease, the goal being to increase the amount of time between them and hopefully minimize their severity whenever they do occur. MS medications have not typically been shown to have efficacy for the disease, though some neuros still prescribe them. At our Advocacy site patients run the gamut. Some are minimally affected, others are partially or completely blind, others are already in chairs or beds, and we have more than a few who are currently vented.
It's important to find a neurologist who is current with the research both past and present.
Respectfully,
Grace (NMO+ since 2005)