Follow-up Neuro appt

My follow-up neurologist appointment is tomorrow, in which I will (finally!) get the results of the variety of tests I've had over the last 2 months. As I understand it, all of the tests were to see if i have something-other-than-MS and thus if they all come back negative it doesn't mean I have MS, just that I don't have something-other-than-MS. So unless I do have something-other-than-MS, tomorrow I'll be no closer to finding out what is going on, and that's a hard pill to swallow. I don't even know what questions to ask, apart from "what's the next step?" "Will I need a spinal tap?" "Will I need a spinal MRI?" or "Will I have to just wait and see if I develop any more symptoms?"

I keep going over everything, trying to figure out my chances. I keep getting the urge to call up and cancel the appointment because I don't want it on my mind anymore, and I am terrified (more than I am terrified of having MS) that he won't be able to tell me anything about what's been going on, that I'll be made to feel like it's all in my head again. I don't think my neurologist would do that. Still, I don't like this limboland place at all! I know I have it a lot better than other people, though. My symptoms, while alarming at first, are not debilitating or unpleasant.

I wrote up a timeline of my symptoms.

Timeline

UK
28 October 2007: Wrote in diary that I had been really tired/had full body pain since I heard the news about my grandmother passing away 10 days previous.
1 November 2007: Woke up with double vision that lasted about an hour and a half. Terrifying at first. Continued every morning but gradually lessened in severity and time. Dizzy and "felt wrong" during the daytimes.
4 November 2007: Went to doctor, given examination ("nothing seems wrong") and told to make appt to see optometrist.
6 November 2007: Went to optometrist, had field test which was fine. Examined again, nothing seems wrong. Referred to ophthalmologist in Eye Pavilion
1 December 2007: Double vision gone.
15 January 2008: Appt with eye doctor in Eye Pavilion. Examined - nothing wrong (of course, 2 months later!)
Sometime January 2008: Had MRI done
Sometime February 2008: Given results of MRI (Normal). Told double vision probably migraine related. Sceptical but went off pill because it makes my migraines worse. Used to have a migraine every month - now they have all but stopped completely (only 1in 9 months).

AUSTRALIA
12 August 2008: Arrived back in Australia (flew to Sydney from LA)
13 August 2008: Awoke with headache and pain behind right eye.
14-20 August 2008: Vision faded to grey. Noticed phosphenes. Thought perhaps was different kind of migraine aura.
22 August 2008: Saw family doctor. Told it was maybe a stress headache (she suggested antidepressants for anxiety. I said not experiencing anxiety) but referred to ophthalmologist.
23 August 2008: Had shivery/fevery night. Noticed middle toes were numb on right foot when lying down and when I woke up. Gradually got worse (buzziness and numbness) then better over next month.
26 August 2008: Saw ophthalmologist. Said had all the signs of optic neuritis. Field test showed reduced visual acuity in right eye. Organised semi-urgent MRI. Doc brought up possibility of MS for the first time but said not to worry yet.
28 August 2008: MRI scan done.
29 August 2008: Given results of scan. No lesions. Optic nerve inflammation possible but not really obvious. Ophthalmologist seemed relieved, told me probably not MS.
3 September 2008: Neurologist appt. Neurological examination normal, none of the bedside exam signs of MS. Wanted more tests done as previous neurological event concerned him.
5 September 2008: SSEP test (arms and legs)
10 September 2008: Audio and Visual Evoked Potentials Tests
? September 2008: Chest X-ray & Blood Test for MS mimics etc.
13 September 2008: Called neuro's office to report continuing toe numbness (improving).
20-21 September 2008: Optic neuritis headache - however no worsening of vision. Didn't report.
30 September 2008: Toe numbness almost completely gone.
3 October 2008: Rest Ceretec test
10 October 2008: Stress Ceretec test (aborted due to machine breakdown)
17 October 2008: Stress Ceretec test
28 October 2008: Follow-up neurology appointment. Vision somewhat improved but no noticeable improvement for several weeks.

[JonM]

Sometimes the tests will come back negative and later, maybe years later MS will be DXd with recurrance.  Don't panic one way or the other.  As you said your symptoms are mild and improving.

I realize limboland is terrifying and I was there once for several months.  I was DXd pretty easily.  

Many Neurologist will take a wait and see approach early on, figuring you will call if these come back or new symtoms (symptoms) present.  I know of a person who had her first "flare" twenty years ago and had her second 6 months ago. Thats a long-time of not worrying, so if you end up that way, relax and forget about all this.

Good Luck
Jon

[JulesL5S1]

Definitely keep the appt.  It is just as important to rule things out as to rule things in.  And you will have excellent base line tests that may be of value later.  Good Luck.  

[novakf]

Thanks for the reassurance, Jon. If nothing else I figure this will put me on the straight and narrow in terms of looking after myself - getting exercise and eating well in the hopes that I can avoid full-blown MS or at least slow its onset.

All the best,
F.

[sllowe]

Hi there, a belated welcome to you.

Do let us know how you made out at the appt.  I found your explanation of the testing very well said,  "... to see if i have something-other-than-MS and thus if they all come back negative it doesn't mean I have MS, just that I don't have something-other-than-MS."

You understanding of this phase will help you with your patience.  There are so many mimics and it takes time to rule them all out.  In the meantime, I hope you find comfort here with us.

Please let us know how your appt. went and I hope you get some symptom relief soon.

Looking forward to seeing you around,
-Shell

[novakf]

Thanks Shell and Jules,

Appt went pretty much as I had expected. It's a wait-and-see approach for the next few years, I'll have another MRI in 4 months and once a year after that for a couple of years. My B12 was borderline, and a ceretec cerebral perfusion study showed possible vascular disease although the neurologist didn't feel it was significant. I guess I'll just have to take his word on that!

[novakf]

I had my follow-up (6 monthly) MRI last week plus an additional C-spine MRI.

I saw the neurologist today, not expecting a diagnosis, expecting a "come back if you have any more problems, but you're okay for now".

But I have 3 lesions on my spine as well as the optic neuritis, so he gave me a diagnosis. I knew it as soon as I saw the spinal MRI slides up on the lightbox, because I could see them lit up like xmas trees in the cross-section.

Have been acting a bit weird since then. The trip home seemed interminable. Not really sure where I will land. I'm on the waiting list for a cancellation appt in the next few weeks to which I can invite my partner and parents for a chat. Until then I have some time to come to terms. Really respect my neuro and feel I am in good hands.

Wanted to post about it because I am now officially one of those freaks with a normal brain MRI (apart from the ON) and a diagnosis of MS.

[sllowe]

Hey there!

Thanks for coming back!  I wonder why the heck they didn't run the c-spine before? No matter now - as long as it was done.  I'm glad this didn't take so long for you.  Your Dr. sounds good and confident.  

Will you stay with us? I'm glad your loved ones will be there with you when your options are discussed - so very important for all to be aware.  

So, what's this weirdness you are feeling? You sad? Mad? Just unsure?  Spill it! lol...

Here to help, and look forward to chatting,
Shell

[novakf]

Thanks for replying again Shell :)

I guess because the original MRI was ordered by the ophthalmologist who referred me to the neuro rather than the neuro himself? And he pretty much bombarded me with the other tests and probably didn't want to send me back to the MRI scanner just yet. I'm not sure but I think it was just skipped over.

I feel weird I guess because of so many months of pent up anxiety and going over and over everything (which is just part of my personality, even though on another level I am quite easygoing and philosophical). Part of me already *knew* I had MS. Even though my symptoms were not severe, they were scary (particularly the double vision) and I kept weighing up the odds and finding it more and more likely. So now I have a positive diagnosis, I am partly relieved and partly surprised at how much more definite this makes it. I was a little ball of stress all the way home until I got home and could release it all. Plus the whole telling people thing is so overwhelming. Helping my partner understand it, and my parents, and others. It is surprising how much you have to look after other people more than yourself, especially if you've been semi-prepared for the outcome, and they pretty much thought you were all clear.

I will stick around, although I am slightly uncomfortable about the very public nature of this community! I don't like the fact that you can't delete posts of such a personal nature and that they turn up so high in google searches. But I just have to think of it like maybe I will help someone else in my situation. :)

[Quixotic1]

Well, welcome to the club!  I'm sorry that this is what it is, but glad you know and can begin moving forward.  I really do hope that you can stay with us.  You might consider rejoining under a name that does not resemble your own, (if this one does).  I have been posting quite personal stuff about myself (some 5400 posts so far) and have not had a single incident when it seemed I was "outed."

Also, p;ease add your post to the Diagnosed thread at the top of the page.

We recently had a long discussion of the various emotional responses to getting a diagnosis.  I'll see if I or someone else can bump it up for you.  The change-over from not know to a definite Dx is strange.  And it is strange to tell your family.  I understand how you must feel.

I'm glad you came back and told us.  Anytime you really want a post deleted you can ask one of the Community Leaders to do it.  We have been asking for an edit/delete feature.

Quix

[Fluffysmom]

Hi, congratulations on getting out of limboland, although adjusting to your diagnosis will probably be a rough ride at times.  I hope you will stick around and let us know how you're doing, what it's like.

I may make it out of limboland myself someday...

I have 1456 posts, 9 journal entries, 99 photos (some with me in them), and 237 notes.  You can tell I'm not a real private person.

There are ways to be more private; you can private message with people, you can make journal entries that you choose who is able to see them, I think you can do that with photos, too.  You talk about your partner instead of giving their name; choose what information you want to share.

If you need to totally unload, pour out your heart, and later decide you don't want all that out there for the world to see, one of the Community Leaders will be glad to delete your post.

I accidentally (wasn't thinking) started a discussion about a controversial subject.  When I realized it, I apologized and requested that the thread created by my post be deleted, and it was shortly thereafter.

Thank you for sharing your news with us.

Take care,

Kathy

[Lulu54]

Kathy,
Thanks so much for posting the followup even though your heart really isn't into it right now.  The reality really stinks - I'm sorry you've joined us among the ranks of the diagnosed.  It will keep sneaking up and smacking you with the dose of reality for quite a while, but I promise it does get better after the initial jolt.

Your message of not giving up is an important one - and even more so because of your clean brain.  I hope you will continue to share your journey with everyone here.

My best,
Lulu/Laura