Neuro threw me a MAJOR curve ball today

[doublevision1]

It all started out so well!  I met with his nurse so she could do the paperwork to renew my Copaxone for another year.  She reviewed my injection schedule and checked my injection sites.  She seemed impressed in that she wasn't able to feel any lumps anywhere, or see any marks, even where I injected the evening before.  Also was impressed that I hadn't missed a shot.  Like, REALLY impressed.  I guess to her I am a well-behaved compliant patient.

So then I meet with neuro, we go over my 48-hour episode of ON in Dec.  Told him my ophtha questioned the dx of ON.  Neuro however agrees it was ON; said I presented with typical symptoms; and that duration and degree of affect on vision falls on a very wide spectrum.  

Which led him to explain to me why last month he ordered labs to test me for NMO-IgG.  He said that due to the extent of my spinal cord involvement, minimal brain lesions (one on the brainstem, is this even considered still the brain, or is it top of c-spine?), and now having had ON, he suspected neuromyelitis optica (Devic's disease - I found that out later).  He simply called it 'another form of MS' and that he didn't have the results of my test back yet.  I was taken off guard, and since I knew nothing about it, couldn't form any intelligent questions, or any at all for that matter.  He just said he'd follow up when he got the test back.  Didn't offer any additional info; like I've said before, it's like pulling teeth UNLESS I am prepared with questions, and then he will be very open with info.  I didn't get any sense at all from him whether I'd be better off with RRMS or NMO.  He is so even-keeled and non-expressive.  I would never dare play poker with this guy!

So of course I start looking into my MS library and google and Medhelp.  I see it's been covered here in the past.  My books talk about the disease course being poor; no DMD's to treat it; is a demyelinating disease but diff mechanism than classic MS.  Also that it is very rare in North America and more common in Japan.  No Japanese blood in me, at least that I'm aware of, lol.  The symptoms are so similar; I need to look more carefully at how the diseases are distinguished clinically.  

I read that O-bands will eventually show in 90% with MS, but no O-bands for NMO.  My LP was neg for O-bands in Oct 2007, but high-ish in some proteins that pointed to MS, along with 2 attacks and the 2 lesions that got me my RRMS dx.

Oh, and I called the lab who told me my result for the NMO-IgG test:  9.7.   Ummmmmmmmmmmm, of course I have no idea what that means as I have no context.  Maybe any number over zero is a positive result?  I do know that if the test comes back positive, it's Devic's.  If it comes back neg, it doesn't rule out NMO.   Anyway the lab tech said she would mail out another copy to my neuro as he should have received it by now.

After soaking on this tonight I think I will fax him a letter tomorrow letting him know I know the above result and would like to discuss with him what this means; also I have a bunch of other questions now popping into my head.  Since my next scheduled appt isn't till July, I will request a phone discussion and hope he will agree.  Not very practical for me to make the 900km round trip again so soon, given I just returned from there.

I'm full of questions and yes, some anxiety.  On a positive note, I came home and ran 8km on my treadmill.  Not jogged, RAN.  Felt good to have done it, I must have been full of adrenaline as I never go that hard for that long.  I felt better mentally afterwards, and after a cold shower, better physically.

If any of you know anything about NMO/Devic's, or can suggest any questions I should be sure to include in my letter to my neuro, I'd really appreciate any input.  Thanks,

G'nite, all.

db

[doublevision1]

I enjoyed your rant.  Funny, I always hated math as I couldn't understand so much of it.  Now I am starting to see its appeal!  :)
Definite answers and absolute truth would be so nice right about now.

Thanks for the best wishes.  I found the Boston doc's business card today and it has his email address.  It really would be interesting to get his take on this, although might be tough for him to say much that is specific to me since he only saw me once, 7 months ago, and doesn't have my MRI's on file.  But I suppose it can't hurt to ask for an opinion or at least some advice on where to go from here if this DOES turn out to be NMO.

[opie74]

I wish that medacine was like mathematics.  I know that I am a nerd, but I love the definate answers in mathematics.  I guess that is why I majored in it, twice.  I hope that you get an answer soon.  I can't satand when they mention something to you and then say well, I will see you in 6 mo.  All the while you are left to stew and worry and wonder!  I guess that it is not their lives, and they just don't care that "wait and see" is a life sentence.  Oh well.... I do love absolute truth!  I wish that medacine was absolute....

Ok, I am done with my rant!  Seriously,  best wishes, and perhaps it is a good idea to call Boston.

Opie

[doublevision1]

Shelley, you're correct, I did see a neuro in Boston last summer who confirmed my MS diagnosis and agreed with my Copaxone treatment.  It did occur to me to try emailing him to see what light he might be able to shed on this most recent development, although without seeing me I doubt he can say too much.  Perhaps I should be reassured that he was in agreement with my dx, but then again, maybe they both were wrong (plus the two neuro's and two residents I saw in the hospital).  I've been thinking about what Ess said, and I want it to be a horse!!  But maybe it is a zebra...

[Fluffysmom]

Hey, I read your post this morning and googled myself silly trying to find out what your results meant.  I learned a lot about Devic's, and can understand why you couldn't concentrate at work.

The only reference I could find about what is positive vs. negative was from a study done in 2006 at the Allegheny MS Treatment Center in Pittsburgh.  Unforturnately, it was listed as a titer; considered positive by immunofluorescense with a titer of 1:120 or higher; less than that is considered negative.

I don't see how that translates to your results, so I didn't put it under your new thread.  I just wanted you to know that I was thinking about you and trying to dig up and answer, too.  

Take care,

Kathy

[doublevision1]

I've read all your comments, and started looking at some of those websites that some of you passed along.  The information on them is very useful.  Thanks so much for taking the time to read my post and do a little research on my behalf.  I am still trying to grasp that this is even a possibility.  I am starting to work on a letter to my neuro, and I'm taking Ess' advice to wait a bit till I'm sure I'm asking the right questions.  I will need to soak on this a bit and give it the weekend; will target to fax him a letter on Monday morning.

In the meantime, I called the clinic back as I needed them to fax a prescription to the local pharmacy.  Once that was done, I explained to the nurse (the one that was so friendly the other day, and SO impressed with my injection sites) my dilemma, that the doc had ordered bloodwork that I already had the results for, that the lab would be re-sending him the report, and that I would like to leave a msg for him to call me to discuss it.

She replied, in a sing-songy voice, that "we are just like ALL other doctor's offices, when tests come back normal, there is no need to follow up with you.  No news is good news!"    

The sing-songy voice and her flippancy touch a raw nerve, (no pun intended).  So I explained, that NO, in fact that is not OK with me, and that I expect to hear back about my test results, positive or negative.  She got her back up and said, if it's something he needs to follow up on with you, we'll let you know.   HE won't be calling if it's negative.  I replied I didn't care who from his office calls if it's negative, just that I want to know so that I can put it to rest.  She finally asked me what the test was for, and when I told her, she just said "Oh" and agreed to pass on the message.  She said he was on-call though this week and couldn't guarantee he could follow up this week.  I told her it was not urgent and I didn't need an answer this week, I'd just like to know one way or the other as soon as reasonably possible.  Her voice was getting thin and higher pitched and more patronizing, so I could tell she was annoyed with me, which only empowered me more.  After that conversation, I'm determined to put together a good letter to the doc.  

As I read through the literature, I am flip floppping in my mind.  I read one article and it sways me towards believing this is NMO, then I read others which sways me back to MS.  So much of what I've experienced is classic MS, but it's true I don't have brain lesions other than the one on the brainstem; and my neuropathic pain in my limbs plus the ON plus my previous bout with MS hug, can be a part of Devic's.  In the end, what will be will be, and I need to be patient otherwise I'll make myself nuts.   I will just have to put my energies into reseaching this thing further, and getting that letter sent off.

Needless to say it was very difficult for me to concentrate today.  I got a few things done at the office today but left 90 minutes early as my mind was just drifting and I didn't want to use my work computer to be googling about my health.  Also I'm also not feeling myself today, kind of drowsy, as my neuro upped my amitriptyline from 50mg to 75mg to see if this will help more with my neuropathic pain.  I hope I can shake this sleepiness as I want to try to get another run in tonight.  Gotta burn off some of this anxiety.

I'll keep you posted and again, can't thank you enough for your concern.  I do have a question for the MS'ers and limbolanders about the NMO-IgG test, but will post that separately.  

[biowham]

He should've spent more time explaining this to you and parsing the differences, his rationale, the related test results, etc. Not too cool.

That said, I'm still trying to wrap my mind around the fact that you can jog OR run, on anything, anywhere. I can't run anymore. I tried it, actually, with my Wii Fit--great therapy, by the way, if you have whatever I have OR if you have an autistic child--and I simply cannot run. I look like an idiot even trying.

Congrats on the running. He needs to get on the phone with you and answer your questions, stat.

Waddles

[Rena705]

Hey honey...I am absolutely STUNNED!!!   I am going to have to soak this in myself before I can really say anything...other than I can't believe that there is this drastic of a change in  your diagnosis and that he didn't explain that he was possibly looking for something other than MS!  The site that Sunny put up seems to explain the Devic's so that it is understandable but I think your idea to fax a letter to Dr. B. asking for a phone conference is a good place to start now that you have the results of your blood test.  Please let us know if you get any response from him and keep us informed as to what is going on...this is just a total shock to my systems....I can only imagine how you are feeling honey but please know my shoulder is here to lean on ok?

Lots of Hugs,
Rena

[doublevision1]

Thank you everyone for your advice and kind words.  I have to rush off to work right now, but will come back later and re-read your posts more thoroughly.  I am really appreciative of your replies.

[Sunnytoday]

Doublevision,
I had done some research on Devic's a while back. While it is a serious diagnosis, there is still hope. So hang in there! Here are some links that I really want you to check out, ok?

First, is this link that defines Devic's from the National Institute of Neurological Disorders and Strokes (I like getting my info from them, as I trust them)

http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm

Next, is the link to their center that handles studies on rare neurological disease, which happens to include Devic's. They say "If you qualify for a study, then study-related evaluation, treatment and, in some cases, transportation to NIH are provided without cost to you or your health plan." Often times they will use the latest treatment avaliable. So here is that link.

http://patientinfo.ninds.nih.gov/

Here's hoping that you will be ok
~Sunnytoday~

.

[Lulu54]

DV- don't overlook using the labstestsonline.org people.  You can email a question to their experts and they will get back to you with solid answers about test results and what they mean.

I'm pretty stunned to read this from you - I was sure you were dealing with RRMS just like so many of us here.

Keep us informed,
L

[saveone]

Hey, I am sorry for this kink in your chain.  I imagine it feels much like starting over in terms of looking for dx.  I do not know much of anything regarding Devic's.  I googled somethings and found a chart with reference values of IgG.  I have no clue if this will help.

I really didn't have time to read this.  I have an appt with doc in an hour.

http:// www.

xs4all.nl/~ednieuw/

IgGsubclasses/subkl3.htm

terry

[sllowe]

Guuurl, oh, my!

Well, of course I'm not familiar with it, but know you will dig up the info. Is this something you can bring up to the Drs in Boston too? You went there for secondary info on treatment didn't you?

Just a thought....

It's probably a long shot you've got this - just my gut speaking,
ttys,
Shell

[PastorDan]

My experience has been that, if you work at it a little, the labs will often give you more information than will the docs.  Call them back and ask if they can tell you how your score compares with "normal range" numbers.  They might even be able to say if it should always be zero, etc., or a threshold above which it would be positive.

[essdipity]

Wow, I can see why you were floored. I know nothing about NMO, but I'm sure that by this time you've found everything relevant on the web. Does it present with a relapsing-remitting pattern?

Still, I'm betting you have MS. It's the horse, in your situation, not the zebra. Also, how would all your arm and hand problems figure into an NMO diagnosis? That sure sounds like MS, as does your disease course.

Can you possibly email your neuro? If so, you could put together a succinct and very cogent list of questions and comments, and it would be super simple for him to respond. But I suggest you wait till you're sure you have the right questions, since you don't want to keep asking. And can you move up your next neuro appointment? You do have a new issue, at least a potential one.

You comment that your neuro is usually a clam when it comes to info, yet he did share some that was very startling. You're always so prepared and logical, and I can see why you'd be knocked for a loop by something you couldn't prepare for. But hang in there--things will be back on an even keel for you soon. Meanwhile, indulge your proactive self with research on NMO.

ess

[shoshin]

I'm sorry to hear about this unsettling development and it is a little disconcerting that your neuro ordered this test without telling you.

I did have this test and the result was "negative" and the reference range was also given as "negative" so I suspect a number is not a good thing.

I don't know that much about it, but I got the impression that it tends to have a worse prognosis than MS, but it can be variable.

I hope you are able to talk to your neuro and get some answers and context.

sho

[rendean]

Hi,
So sorry to hear about your neuro visit and the lack of information. I think the faxed letter is an excellent idea. Since I research medical information for my job, I went to my usual source, PubMed. This site offers abstracts to scientific articles published. Some, but not many, will grant you access to the full article but as I said they are scientific articles and are written in their jargon. I did find one entitled  A serum autoantibody marker of neuromyelitis optica: distinction from multiple sclerosis. You can just type it into the search bar at the top of the page. On the right side of the page, after you locate an abstract of interest, are suggestions for similar articles. I don't know if this helpful or harmful because these articles are not necessarily standards of care and one cannot take any one article as THE word on a particular subject. These abstracts also do not offer medical advice or treatment. Just thought it might give you a place to start with questions for your neuro if you've already done the google thing and didn't find enough info. Remember as you read, ANYONE can get a study or opinion published and PubMed is just a gateway to these publications. Also, did you look at emedicine.com?

Good luck!
Rendean