Well, the good news and the bad news.....

As many of you now know, I was a wreck a few days ago...please see
http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=105&topic_id=88678&mesg_id=88678
if you want the story.

Anyhow, here's the good news: My husband still has a "temporary" job in another area of this company and is up for a permanent job! Now that is the good news. We are signing up for COBRA in the meantime, so it will be okay w/ health insurance.

Now for the bad news. I don't have MS. Okay, that must sound like good news...but it isn't. Went to the neurologist on Thursday and things aren't lookin' good. I have "abnormal white matter" as evidenced by the cranial MRI, but it is not specific to MS and more work-up must be done. I am concerned because as crazy as it may sound I was hoping for MS diagnosis because I know from researching this disease, most people don't end up in a wheelchair...it's more of a "flare-up" type disease. So now I am really in for it. When I went to the neuro, I didn't do too well with the reflex, walking (my gait is WAY off) and it appears that I may have optic nerve damage. Neuro stood about 6 feet away and held up a number of finger in each hand. I really had to concentrate to determine how many fingers he was holding up....BAD!

Long story short...Neuro has ordered a VER (Visual Evoked Response ...they are testing my optic nerves to check damage) and an SSEP (Somatic Sensory Evoked Potential)....attach electrodes to my feet, legs, abdomen etc...and then the tech "shocks" me to see how my nerves are responding.....sounds fun, eh?

The slower the response, the more likely I have neurological damage. So we will see. Right now, I have a definite loss of equilibrium, numbness from my knees down...definitely weakness (can't get off the floor alone)...reminds me of that commercial "I'm falling, and I can't get up." Shit, I feel about 100 years old. My mother is 89 and is in BETTER health than me!

All you guys here at DU have been great. I sincerely mean that. If I wasn't able to post and read your responses, it would be a lot worse, believe me.

Ya know, I have always been an EXCELLENT typist and an EXCELLENT speller, but my cognitive abilities are a little awry right now, so bear with me.

At least I haven't done the ol' "loose" thing, when one means to say "lose"....LOL!

better. I also hope that your husband gets that permanent job. Bless you.

I'm very sorry and I hope that the VER goes well... not really knowing what I mean by that. I know what you mean by wishing that there was something "determinate" there. Good luck.

Anyways, keep us updated and I'll be thinking about you!

Rebecca

Do the docs have any ideas?

Sending lots of love through the wire...

Mentioned Lupus....but that's it. <he hasn't seen the blood work-up yet> and that is why he didn't want to comment.

What sites have you visited re: MS

I ask because I was diagnosed last Oct with MS (I was "lucky" in that it occured after a second flare-up and an MRI) My diagnosis came in the form of a brief 5-minute follow up appt for the MRI (i felt relieved then scared, fearing that it was ALS still) The doctor assured me it was MS based on the MRI.

The reason I mention this is that it makes me want to ask my neuro more and more questions about it.

The site I go to regularly for updates in the National MS Society site-- www.nmss.org It's been helpful as have been the message boards one can link to from it.

What I've found is: 1) Many neuros aren't God. They are fallible
2) Symptoms differ from individual to individual 3) Being dx'ed w/ MS can be a lengthy process.

The optical neuritis sounds MS-like as well.

I'm by no means an expert, and am stumbling (at times literally) through this whole thing as well.

I totally am w/ you on the dx being a "good thing"-- I was relieved to have a name and a means of attack (however, limited)

Best to you and yours-- I pray that you get a complete answer ASAP--that is 90% of the battle.

I am "too old" for MS. I am 55 and he told me that after seeing the MRI and my age...he thinks it's something else....maybe Lupus?

is someone I trust. Yes, I have been to the sites you mentioned before seeing my Neuro, but the MRI indicated abnormalities that WERE NOT specific to MS. My neuro was quite sure that it wasn't an indication of MS. Said my age alone (55) didn't suggest MS, along wit the MRI.

So I wait.

There is a strong history of lymphoma in my immediate family. I just hope it's not CNS Lymphoma. (no cure).

will soon improve. Thinking positive thoughts for you!

That's great news about the possibility for a permanent job and that you have insurance.

Keeping my fingers crossed for you.


Cher

As I type.

dajabr

I'll send you white light if it helps.

~sending positive cyber-vibes~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We're with you. :loveya:

I truly appreciate all the caring from you folks.

It's just a "waiting game" now..and I am cool..just need a "double valium smoothie" and I will be fine!

n/t

Perhaps it isn't MS, but although people usually get it at a younger age, that's not always the case. I know a woman who was diagnosed with it in her forties, I think late forties but I'm not sure.

I've had those evoked potentials tests. I hope you have a high tolerance for pain because I felt like I was in a torture chamber during that test. Those electric shocks really hurt! I had the test on vision, hearing, hands and feet and it took hours and hours. I don't know if things have changed or not, but when I had it, they stuck some of the electrodes on my head (as in on my hair) with real goopy stuff. I had to pick up something at the supermarket on the way home looking like shit and it was real fun washing that stuff out of my hair. I'm not trying to scare you, I just thought this info might help you brace yourself for the tests.

I hope they find out what's wrong with you, and that it isn't anything too bad. I'll be thinking of you, and let us know how it turns out.

Great news about your husband; at least that's working out.

A definitive diagnosis is a must but lots of problems can be managed medically and there are ways to re-route different brain functions to another section of the brain now.

I am continuing to send you vibes. Be well, friend!

a migraine workup and it was only yicky in that I knew I wasn't the one making my toe and thumb jump....shivering.

Best of luck in getting through, and I am hoping for the best possible outcome for you.

Laura

a migraine workup and it was only yicky in that I knew I wasn't the one making my toe and thumb jump....shivering.

Best of luck in getting through, and I am hoping for the best possible outcome for you.

Laura