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Tue Apr 16, 2013, 04:15 PM

Only MS, NMO came back negative!

I know there is a 30% false negative on that test but I'm still so very relieved! MS isn't the greatest disease to have but it's better than NMO so today I am very relieved.

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Arrow 16 replies Author Time Post
Reply Only MS, NMO came back negative! (Original post)
LiberalLoner Apr 2013 OP
Downwinder Apr 2013 #1
LiberalLoner Apr 2013 #2
Downwinder Apr 2013 #3
LiberalLoner Apr 2013 #4
Downwinder Apr 2013 #5
LiberalLoner Apr 2013 #6
LiberalLoner Apr 2013 #7
Downwinder Apr 2013 #9
LiberalLoner Apr 2013 #10
tavalon Jun 2013 #14
Downwinder Jun 2013 #15
Downwinder Apr 2013 #8
LiberalLoner Apr 2013 #11
ProfessorGAC Jun 2013 #16
Warpy Apr 2013 #12
LiberalLoner Apr 2013 #13

Response to LiberalLoner (Original post)

Tue Apr 16, 2013, 05:04 PM

1. Don't know much about NMO. Any word on your treatment?

National MS Society has cards that say, "I'm not drunk, I have MS."

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Response to Downwinder (Reply #1)

Tue Apr 16, 2013, 05:15 PM

2. I want an orange tshirt that says that!

Treatment will have to wait until doc comes back, she is away right now. I am leaning towards Copaxone.

NMO is like MS only more severe and usually fatal within a decade.

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Response to LiberalLoner (Reply #2)

Tue Apr 16, 2013, 05:29 PM

3. They say with MS you should attain 75% of expected

lifetime. If that is true, I'm working on someone else's time now.

The quicker you get on a maintenance therapy the less damage is done. Some of it takes a long time to repair.

You are R&R, are you not.

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Response to Downwinder (Reply #3)

Tue Apr 16, 2013, 05:57 PM

4. I'm sorry you have this too.

I hope you are doing okay!

I do seem to be RR, still in middle of diagnosis. The neuros say I have for sure a CNS demylenating illness with one large, bad spinal lesion stretching over several vertabrae and two small lesions in the brain and some signs of mild ON. But they were not sure which disease, which is why they did the NMO test and a bunch of other tests. I do have oligoclonal bands in spinal tap. So at least to me it sure looks like a bad form of MS.

I want to take DMDs pronto because I have had 3 attacks now in 3 months and want to slow this stuff down. Bought a walker, if I get any worse will need to use it. Getting by for now, just very stiff and limpy and have clumsy hands, weak legs, headaches, bad bad fatigue, twitching, jerking like seizures, muscle cramps, seem to be overly emotional lately, cry too easily.


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Response to LiberalLoner (Reply #4)

Tue Apr 16, 2013, 06:41 PM

5. Gift of my government. Multiple lesions, both hemispheres.

I got down to where I could not walk, talk or see. Vision came back, my gait is not quite right but I can do four miles and skated in a 5K, speech is a problem (temporary registers got hosed), as long as I don't get too hot or flustered I do well. I choreograph everything and pre-plan talking points. I don't do well with off the cuff conservations. Other than fatigue and the afore mentioned intoxication, everybody's symptoms seem to be different. Some of them can be quite interesting. For a while hot and cold got switched. With the optic neuritis my vision broke up like a satellite digital signal in a thunderstorm. I could not see the Walmart sign painted on the side of the building. When the speech came back I could rattle off the words to songs and all the stuff I memorized in grade school but I could not string three words together in a conversation. It has been an interesting trip.
I asked my Neurologist about a You are the long term study on Ribif. He said, "You are the long term study."

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Response to Downwinder (Reply #5)

Tue Apr 16, 2013, 07:54 PM

6. Wow....you really got it bad...did you ever have really bad lower back pain,

With bruising showing up a day or two later, with all the usual ms symptoms?

I have had enough problems with remembering what word I want, that I have pretty much stopped socializing.

I don't much mind most of the symptoms but the lower back pain that comes sometimes during a bad spell hurts so darn bad it makes me sweat.

I also get myoclonic jerks when I lie down at night. Makes it really hard to get to sleep and it kind of hurts, like a shock I guess. I don't like that symptom much.

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Response to LiberalLoner (Reply #6)

Tue Apr 16, 2013, 07:56 PM

7. Oh when you say gift of govt, you mean Gulf War or....?

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Response to LiberalLoner (Reply #7)

Tue Apr 16, 2013, 09:20 PM

9. Nevada Atomic Bomb tests.

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Response to Downwinder (Reply #9)

Tue Apr 16, 2013, 10:09 PM

10. Yikes. Hence your user name....

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Response to Downwinder (Reply #9)

Wed Jun 5, 2013, 11:12 AM

14. Everytime I see your handle,

I think about my mother being pregnant with me and then we stayed for 6 months after I was born, in Beatty, Nevada. I think they had finished the testing by 1963, but I wonder what after effects might have lingered and whether the multiple autoimmune screw ups I have might somehow be linked to that. Certainly would be hard to prove.

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Response to tavalon (Reply #14)

Wed Jun 5, 2013, 02:30 PM

15. Most everything is about cancer.

To have cancer be a problem you also have to have an autoimmune failure.

My brother brought a Geiger counter home for the summer. He went out prospecting and I sat in the Lab and assayed his finds. No uranium but every thing was hot. He later lived and died in Kauai. Never smoked but developed lung cancer. I on the other hand have been smoking two packs a day for fifty four years and my lungs show up clean.

There was Netherlands study which showed a reduced rate of cancer in MS patients and I have been unable to find any incidents of AIDS with MS.

Carole Gallagher's AMERICAN GROUND ZERO THE SECRET NUCLEAR WAR is a good read.

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Response to LiberalLoner (Reply #6)

Tue Apr 16, 2013, 08:22 PM

8. They have medications for the muscle spasms.

Mine have been minor and I have corrected them by forcing my thoughts to the top of my brain (sounds strange but worked). Massages helped. I don't have any spinal lesions. Have had shooting pains in my toes but they have not lasted long. Cramps have been a problem, especially if I let them go too long

People claim that cannabis is good for the pains and spasticity, I didn't like it because it put me back in the fog I was trying to escape.

I have learned to control my emotions by just freezing everything, sort of like freezing when a bee is buzzing around (I am allergic).

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Response to Downwinder (Reply #8)

Tue Apr 16, 2013, 10:14 PM

11. Oh....my brain lesions are minor but my thoracic spine is awful.

I have spasms too, which generally don't bug me because they just come and go, but the seizure jerks I hate. My whole body spasms just like epilepsy and I get a shock like painful feeling. It's very brief but I find it very unpleasant. I am hoping to be prescribed Neurontin or some other anti seizure medicine if I ever get back in to see the doctor.

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Response to Downwinder (Reply #3)

Thu Jun 6, 2013, 03:55 PM

16. Just Curious

Where did the 75% number come from. I've been active in NMSS since i contracted it 19 years ago, and i've never heard that.

I've peer reviewed the data analysis of some treatment studies so i've been plugged into the clinical side for quite some time.

That's not a number i've ever heard used.
GAC

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Response to LiberalLoner (Original post)

Wed Apr 17, 2013, 11:24 AM

12. They're a lot better at MS than they used to be, that's for sure

I worked with RNs who had it and they coped with a tough, physically demanding job with the rest of us.

The trick is to beat back flareups when they happen and increase the periods of remission between them.

The best thing about a shitty diagnosis is also finding out it can be treated.

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Response to Warpy (Reply #12)

Wed Apr 17, 2013, 01:56 PM

13. One of my problems is that I now have permanent disability from multiple attacks of

Transverse myelitis. I am getting an attack now every 4 weeks or so, and with each week long attack I accumulate more weakness in my legs, numbness, spasms, problems walking and balancing, etc.

I no longer have any times where I am back to my old self.

MS as you know has a big range from almost 100% fine to bedridden and quadrapeligic like Annette Funicello was before she died.

My Aunt, a nurse, was shocked that I bought a walker and use it because she has fellow nurses who walk normally, run marathons, have years between flares and no symptoms between flares.

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