New & NMO patient #? Explanation

[whajj]

Hello. My name is Wendy.
Let me first say that I know this is not an NMO forum which I'm sure I'll hear that. However, due to the lack of U.S. NMO forums and since I can't read the languages of the forums that do exist, I find myself here. I'm sure that it also seems pointless to even discuss NMO due to life expectancy, treatment and so on and so forth but I saw some NMO patients post here too. Perhaps I should start my own forum as well but being as my eyesight is now becoming an issue, my main concern wouldn't be how to maintain my own forum.

So if no one minds me not making comparisons and just listening and you just might after I tell you about a bit about me, then I'd like to be a fly on the wall at most.

I was diagnosed with NMO August of last year.
I am 37 years of age now.
Ironically enough, I grew up in a family with 5 MS patients. All different types of MS.
Most of us all see the same neurologist. I like many people have a love/hate relationship with my neurologist. She really is the best for me.
So, naturally it would seem to be that we all have something in common and since I grew up around MS, I would know a lot about that but the tears on my sister's ( MS patient/nurse)
face when the words NMO came out of my doc's mouth, I was clueless.
Well, a year later and Rituxan treatments and a hit of steroids here and there and I get worse everyday.

I have a very supportive husband and a joyful 5 year old. They are something special.
A year ago, I don't think I would have ever seen this coming.
I cope just fine and hope that there would be something pop up.
I wish this was a forum for both as I am envious of all the info provided for MS and am appreciative to pass it on for my family discussions for them.
Sorry about the book but I don't like walking uninvited into someone's house without explaining myself.
Cheers!

[Seasha]

Hi Wendy! Even if this is a MS forum, you are most welcome to be here and join in. Like you mentioned, we have had some discussion about NMO under our Related Disorder forum http://www.msworld.org/forum/forumdi...evic-s-Disease

I just did a little online searching and came up with another forum that you might be interested in! It's called Patients Like Me. Once there, on the left hand side there's a box to type in your condition and it will direct you to others with NMO. It seems like there are quite a few others who might understand better what you are going through. Regardless, you are still welcomed here as well!

I am sorry you have this, but you sound like you have an upbeat attitude. I'm so glad you have a supportive husband too.

I wish you wellness

[whajj]

Hi Wendy! Even if this is a MS forum, you are most welcome to be here and join in. Like you mentioned, we have had some discussion about NMO under our Related Disorder forum http://www.msworld.org/forum/forumdi...evic-s-Disease

I just did a little online searching and came up with another forum that you might be interested in! It's called Patients Like Me. Once there, on the left hand side there's a box to type in your condition and it will direct you to others with NMO. It seems like there are quite a few others who might understand better what you are going through. Regardless, you are still welcomed here as well!

I am sorry you have this, but you sound like you have an upbeat attitude. I'm so glad you have a supportive husband too.

I wish you wellness

Thanks! Any information is good information. :@)

[jreagan70]

The Guthy-Jackson Charitable Foundation (www.guthyjacksonfoundation.org) has what is probably the most comprehensive website anywhere in the world about NMO. It's the group that does the most fundraising for NMO research, and they have annual gatherings of patients and NMO experts.

The Foundation has a patient community called Spectrum. You can join it here: http://spectrum.guthyjacksonfoundation.org/. It used to be more active, but might still be beneficial for you.

It's fine to be on an MS forum if you want support for dealing with a chronic disease. But I agree with you that it's pointless to discuss characteristics, symptoms, diagnosis or treatment of NMO.

There's already far too much misinformation about MS on MS forums for there to be much reliable information about NMO on MS forums. When it comes to NMO, almost nobody on MS forums knows what they're talking about. So even when discussing symptoms in general, the discussions will start to skew toward MS. If you're absolutely convinced that your knowledge of NMO is 100% rock solid, that might not bother you or mislead you. But otherwise you'll have to be careful about what you read.

Threads about NMO on MS forums are affected by well-meaning people offering what they think they know about NMO but is totally wrong. And the advice isn't good, either -- things like, "You shouldn't take so many steroids. They're bad for you." And, "There's a test for NMO that will tell you whether you have it or not." And, "The VEP is an optic neuritis test. You should get one." So it's better for everyone not to go down that path.

So please do try the Spectrum community at the Guthy-Jackson Foundation site. You can talk with people who actually have NMO, and you can get up to date on the latest research. Best wishes.

[Grace53a]

Excellent post jreagan, and you are spot on. While the symptoms of NMO and MS are similar in the beginning of the disease course, the two diseases diverge widely with the passage of time. In addition, the treatment of the two diseases differs greatly and there is often a marked difference in the treatments and medications used for symptom management.

Whajj, in regards to NMO forums---there are now many of them out there, and some of them are excellent. Dr. Michael Levy who heads the Neuromyelitis Optica Clinic at Johns Hopkins, has a Facebook group called the Johns Hopkins NMO Clinic Group. Members post queries which are subsequently answered by Dr. Levy or his NMO Clinical Research Nurse, Maureen Mealy. He is one of the foremost NMO clinicians and researchers in the nation and is well respected internationally as well. There are also several other NMO groups at Facebook that are very good, though they tend to become very technical and are fast moving.

The Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research is an excellent resource for NMO patients. They have one of the most comprehensive collections of NMO scholarly research literature on the web. NMO is still a rare disease, and familiarizing yourself with the scientific literature is the best way to learn about your condition, and will enable you to become a proactive patient. While anecdotal information from other patients can be helpful, it should never be taken as fact. As jreagan pointed out, there is a lot of misinformation being bandied about by well meaning people.

Incidentally, the NMO Diagnostic Criteria has very recently been revisited and revised by The International Panel for NMO Diagnosis (IPND). It not only expands the core criteria and addresses the issue of NMO brain lesions in more depth, but makes the requirements for seronegative NMO much more stringent.

I wish you luck in your NMO journey.

Grace (NMO+ since 2005)