Very confused - no lesions

[SunshineDaydreams]

I don't think I have MS. This isn't the first I've thought this - but I don't know what is going on - is this all in my mind??? Pun not intended.

I have had YEARS of severe pain in legs/feet - since 2004. It started with deep, deep cold pain down the middle of my thighs, then burning in my feet, then pain along the sides of my thighs to the slightest touch (I get this same pain on the top of my head from time to time), then muscle cramps. I get electric shocks from middle of my forehead down to my cheek, and from my stomach to shoulder. My neck and back are cramping now and fingers get that cold, deep pain. It keeps getting worse.

I limped on and off for years and now walk spastic with difficulty and some days cannot walk at all. I have a cane, walker, and two wheelchairs and have needed to use them all since 2012. I've had a black spot in my eye since my vision suddenly went black in that eye back in 2002. I have daily tremors. I have verbal paraphasia - cannot get the words I'm thinking to come out of my mouth pretty often, especially when tired - which is practically ALL the time.

I cannot remember something from one end of the house to the other. I was an editor for 8 years (very good speller) then suddenly couldn't spell back in 2004 - and still not so good. I typed 85 wpm - now test at 30wpm. I have an awful time counting things, and have to read and reread directions over and over until i'm so frustrated i give up. I really have to think which is left and which is right - and still get them wrong.

I have days when I get up and can walk across the room - normal - then collapse.

I have O-bands and high IgG on spinal - positive for MS neuro says. He dx me in June 2012. I was on copaxone until last month - no improvement, just steadily getting worse. He started me on Tecfidera this week and did another MRI.

I just got the results - NORMAL. I went to a specialist at Hopkins who found six tiny lesions in Oct 2012. I felt then that maybe they are right, maybe it is MS. My August 2013 MRI didn't even warrant a whole sheet of paper - it's 10 lines - Normal, Normal, Normal, Normal, Normal, Normal, Normal, Normal, Normal

This isn't MS is it? Can someone help me figure out what else it might be??

[wheeliegirl]

SOMETIMES LESIONS ARE SMALL AND DON'T SHOW ON THE MRI.
DID YOU HAVE A SECOND OPINION ON MS? WHEN IN DOUBT ITS CAN BE GOOD TO GET A SECOND OPINION . WERE YOUR MRI'S ALWAYS CLEAN? DID YOU NEURO MRI YOUR T-SPINE. LESIONS CAN ALSO BE FOUND THERE IN SOME PEOPLE. I KNOW MOST NEURO'S ROUTINELY WILL JUST MRI THE BRAIN % C-SPINE CHECKING FOR MS AND OTHER PROBLEMS.p

[22cyclist]

If Hopkins found 6 lesions, your LP showed bands and high IgG, you probably have MS. They are probably also accounting for your exacerbations in time and space. If both docs agree you have MS, you probably do, unfortunately. You can always go for a third opinion if you feel it is necessary. I hope the Tec will work better for you.

Take care
Lisa
Moderation Team

[MSer102]

Ditto on what's been said. If you have O bands - more in your spinal fluid than in you blood - there are only so many things they can be caused by. If you want to know what else besides MS causes O bands you can google them and ask your neurologist about them. So if you want to know what else you maybe could have based on your lumbar puncture, those are the possibilities.

It sounds like your MRI's showed lesions that suggested MS so you already have a history of that.

If all of the other things that can cause O bands and brain lesions and your symptoms were ruled out - you'll have to ask your neurologist how that was done - that leaves MS. If your MRI's and your history of symptoms and exacerbations fit the MS criteria then it's pretty darn likely that you have MS.

MS lesions can come and go, and some are too small to be picked up on an MRI. Some of my lesions - even big ones - have disappeared on my MRI's. If lesions don't show on one day's MRI it doesn't undo everything else and mean that you don't have MS.

Hopkins is already an excellent second opinion. That makes 2 doctors who diagnosed you with MS. You can get more opinions but you will have to get 3 more that say you don't have MS to over rule the 2 that say you do. That might be hard to do because your lumbar puncture and MRI's and history seem to point so strongly to MS.

If you want to know if you have something else in addition to MS, that would be a good question to ask your neurologists and your PCP - and maybe any other specialists you've seen over the years.

[SunshineDaydreams]

Thank you all - I see my PCP in two weeks and she has been with me since 1987 - so I think I can talk this all over with her.

WheelieGirl - I did not have a Tspine MRI, but, did have the Igg-NMO test that was negative. 22Cyclist - I was hoping to hear from you (thank you) - is a negative IgG-NMO definitive? I have to wonder about this given the hiccups, vomiting, and massive lower extremity damage.

My PCP will order the T-spine MRI if you all think that is warranted (yes, I trust many of you more than the Drs)

Thank you again

[misslux]

Do you have a history of relapses? Did Johns Hopkins say remitting relapsing MS or primary progressive. If the latter, then your meds wouldn't have helped.

I second that Hopkins is an excellent second opinion.

[MSer102]

The NMO-IgG test has a false negative rate of about 30%. That's fairly high so a negative test doesn't rule out NMO. The hiccups and vomiting aren't uncommon in NMO. The diagnostic criteria for NMO require long spinal cord lesions so you should have C spine and T spine MRI's. I'm kind of surprised that you haven't already had them if you have "massive lower extremity damage".

The very best place to get correct information about NMO is the Guthy-Jackson Charitable Foundation: http://www.guthyjacksonfoundation.org/. There's a button at the top right side of their home page for the online community/forum called Spectrum. You can ask questions of the members there and get help from people who actually have NMO and know what they're talking about. When my neurologist thought I might have NMO I looked for information and found out that MS forums are TERRIBLE places to ask about NMO. There's waaaay too much misinformation about NMO in MS forums. So I think you should stick to the Guthy-Jackson website and the Spectrum forum.

And I think you should definitely contact your neurologist at Hopkins and ask about the possibility of you having NMO and why you were diagnosed with MS and not NMO.

[Swammack]

No lesions does not mean no MS!

You do not need to have lesions to have MS! This is the easiest way to diagnose but as my dr explained they aren't required! I see one of the top specialist in Boston and she has argued with other neros who don't know as much about it.

[Grace53a]

Hi SunshineDaydreams,

I am an NMO patient diagnosed in 2005 via the NMO IgG test. Below is the revised diagnostic criteria:

The two absolute (must have) criteria for full blown NMO are:

Myelitis (TM/LETM) and Optic Neuritis

Two of three supportive criteria are also needed. They are:

MRI evidence of a contiguous spinal cord lesion 3 or more segments in length

Onset brain MRI nondiagnostic for multiple sclerosis, or

NMO-IgG seropositivity. CNS involvement beyond the optic nerves and spinal cord is compatible with NMO.

There are also limited forms of the disease, that are *either* relapsing ON *or* relapsing TM/LETM but *not both*.

As mentioned above by another poster, there is a chance of registering a false or treatment masked negative. That being said, a seropositive NMO IgG test result is highly indicative/predictive of relapsing disease.

Johns Hopkins is an excellent facility and if there had been any hint of the possibility of NMO they would have been investigating further.

Grace

[Thinkimjob]

Whatever you've got, it doesn't sound too good. May as well be MS.
Is there any useful treatment for NMO? Is there any useful treatment for MS? (Rhetorical question.)
Good luck.

[22cyclist]

Sunshine it sounds like you have gotten some great advice. I would definitely ask for a T-Spine MRI too. I hope things get better for you!

Take care
Lisa

[nosrepmodnar]

I will jump on the spinal MRI bandwagon, my walking problems occurred after lesions appeared there.
As for ineffective treatments, the MS drugs will not heal lesions that are already there, their purpose is to prevent new ones, at least that's what I have always been told.

Good luck.