Newby in Limbo = Howdy

[MisterTimC]

Hello world!

I've been lurking for a few days, just reading, reading, reading. You all seem like a great bunch of people that I've already gotten to know. I must say, Q, (if I may be so informal on first introduction) you are simply amazing! Thank you for so much great info. The Health Pages are wonderful! I haven't finished reading all of them yet, but I'm sure I will before too long.

Introductions: 59 y.o. male, 5'5", 160#, (OK, slightly overweight for the past 10 years) former runner (at 120#), skier (nordic and alpine), bicycler, hiker, backpacker, rock climber, D league softball player (any position except first base, haha), rugby player (hook, wing and scrum half) very amateur musician (guitar and bass) and in my spare time I would try to make enough money by being a geek to keep all of that going. Was single until 32, but now after 27 years, and the flop of the economy, and my first bout with Whatever It Is, and my ADD finally drove her crazy and she sent me packing this year.

So yeah, there has been a lot of stress lately.

I am now in my second bout with Whatever It Is. My first bout started mid-Sept '09 and slowly cleared up around the beginning of March '10. I was feeling fairly well for a few months, so that's when she pushed the divorce thru. Then the current bout started mid-August '10 and it's now Oct, so I'm into this bout with Whatever It Is for about 3 months now.

My primary symptoms have been leg weakness in both legs, along with wobbliness, shakiness, and numbness that has been slowly creeping up my legs (now almost to the top of my thighs). And you know that weird feeling that there is something stuck on the bottom of my shoe, but when I stop to look, of course, there is nothing there.

I used to love to take adventuresome hikes in the mountains, but now walking is an adventure with nearly every step; sometimes the ground finds my foot in a different place than I expected, sometimes off a little bit this way or that or sooner or later than I expected. But no matter that, I can't walk very far any more, so what? I have adjusted  by using a cane to help me keep or catch my balance.

Besides that, I can't stand for more than a minute or two either; the problem with that is work, or standing in line at the grocery store. My work requires a lot of standing and walking from one desk to another. Sometimes I can sit down for a few minutes, which helps. And I brought in a tall stool for when I have to work at the server, but sometimes walking around at work is totally exhausting.

And one bad day will cause another bad day. But a restful day will usually bring a good day to follow that.

But perhaps the most annoying symptom is the jittery, quivering, tingling in my legs when I'm sitting or lying down. I swear sometimes I want to just cut them off. But somehow I think that wouldn't go very well, so I haven't done anything drastic, but sometimes it's enough to drive me absolutely crazy. Whoops, too late; went crazy long time ago.

I've been using at least one cane all of the time while fighting Whatever It Is, and sometimes I use a pair of crutches if I need to go very far, but there have been times when the fatigue in my legs has just totally overwhelmed me. I get to the point where my thigh muscles are just about totally useless.

And unfortunately, I have had to leave work unfinished a couple of times because I feel completely wasted from the bottom of my feet all the way up to my rib cage. Which then also affects my brain, which I need rather badly. I'd use three canes if it would help, but I finally gave in and got a used wheelchair. I hate the thing, but sometimes its the only way I can get around.

During my first bout, the neuro department at the nearby "health sciences university" took samples of EVERYTHING. They were able to rule out Lyme, West Nile and some other tests also said Negative, but mostly the results were... 'inconclusive'.

A couple of the tests of my CSF were a little out of range, but there were no O-bands (hmm... that reminds me of our current president, O-bam. Oh well, I'm sorry. I have a horrible sense of humor. I know... comedians out of work, and what am I doing here?) As I was saying, without the O-bands, the tests were... "inconclusive".

When this bout hit me, I called for an app't with the neuro where I had gone before, and the soonest they could get me in was ... drum roll ... February 2011 !! Hi-hat clank !! So, I'm checking with my PCP to see if he knows another way to get some neuro testing done in a timely manner.

Now, just for a little discussion... All of this trouble with Whatever It Is showed up while I was taking Cymbalta. Hmmm... makes me wonder. Two plus two makes, uh ... And now that I'm off of that darn drug (was that ever a battle!) I still have the dizziness, zzapping in my head and tinnitus, which wasn't there before.

I'm hoping that Whatever It Is will be temporary and will clear up in the next few months as my body repairs the damage that was done by that darn drug. But that's just my theory, so don't take any grains of salt with that.

So why did I start taking Cymbalta? I thought you'd never ask. In 2007, my ex was depressed, but convinced our psychologist that I was depressed. Not knowing any better, at the time, I went to the shrink who started me on Cymbalta because of my chronic back pain, which is due to degenerative arthritis in my spine.

So there's another clue in the mystery of Whatever It Is. Except that my spine MRIs have been... yep, "Inconclusive".

Hoping I haven't bored you all to tears,
TimC

[Quixotic1]

Your CSF is totally normal.  You had very few cells so they had to hunt a lot to find 100 cells to count.  The percentages are meaningless with so few cells in the fluid.  Myelin Basic Protein is near normal, but is not really standardized and doesn't tell us much.

Where is the IgG and albulmin synthesis numbers (about 4 of them) that make up the IgG index???  Could there be another page to the report??

Quix

[MisterTimC]

That posted kind of OK. This one was just a single line:

Component                        Your Value   Standard Range  Units
MYELIN BASIC PRO CSF       1.13               < 1.11            ng/mL

[MisterTimC]

DocQ: Bingo! You are so amazing! And I'm not going to apologize for making you blush. Yes, my first round of testing was done at OHSU last fall/winter. My PCP's referred me to the neuro that he would go to and happens to be Hillsboro; he prefers other doctors who listen and think. I've got a few more days to study for that app't.

Do you know of a good way to post the test results from the OHSU MyChart? I'll try a copy/paste and see if that posts OK.

Test: CELL COUNT DIFF, CSF

Component Your Value Standard Range Units
CSF WBC            < 1                     < 6                    /cu mm
CSF RBC             1610                (blank)                /cu mm
DIFFERENTIAL CSF 100             (blank)                (blank)
SEGMENTED
NEUTROPHIL(CSF) 60                  < 7                       %
LYMPHOCYTES(CSF) 30            40 - 80                   %
MONOCYTES(CSF) 4                  15 - 45                   %
EOSINOPHILS(CSF) 6                  (blank)                   %

When I look at this, I have no understanding of it, but it looks to me like my Segmented Neutrophil (CSF) is way out of range; mine is 60% when 'normal' is < 7%.

Also, my Lymphocytes(CSF) was at 30% when normal is 40 - 80%.
And my Monocytes(CSF) was 4% when normal is 15 - 45%.

[Quixotic1]

By the Way, your symptoms sre suggestive of a Transverse Myelitis.  Another entity that comes to mind is CIPD.  Would you be willing to print the entire results of your LP testing?

[Quixotic1]

Wll, Howdy right back!  I see the line-up for Last Comic Standing has swelled by one.  Welcome, neighbor.  We are only about 50 miles apart.  I want to give you a probing answer to What-Ever-It-Is that has befallen you, but it will have to wait until after my extended, put-off, dreaded, and completely undone taxes are sent in on Friday.  Why procrastinate when you can always do it tomorrow.

Welcome, I was flattered and blushed like a kid when I read your compliment.  Thank you.  I write those so people can get thorough answers and will understand it their docs start blowing smoke at them.  The HPs are sort of like my children.  And I didn't write all of them by any means.  The forum has many smart and excellent writers.

I'll be back periodically, when I tire of adding up sales tax on our case of receipts.  Before your next neuro visit be sure to read Lies My Neuro Told Me.  I think it is the best for helping someone to see if their neuro knows anything about MS or not.

I see you went to OHSU.  Did you like it there?  I have heard not much good.

I go to the Providence MS Center at Providence St. Vincents, on Barnes Road in Beaverton.  I think it's great, and actually closer to you than OHSU.

Quix

[MisterTimC]

Thank you all. It looks like I have my homework cut out for me. Start a journal, post my test results, and go get a new joke book. I will do that, except that tonight, I 'm tired and need to hit the hay.

But, one bit of great news: I went to see my PCP (the greatest PCP in the world, by the way) and he referred me to a neuro in the area that he really respects. I called and got an app't with him in one week! So I'll load up with everything I can to take with me to see him.

I'll read the Health Page on that subject and be back with questions. And, oh yeah, I need to post my test results.

OK, one story before I go to bed. This is true: I was in the waiting room at the BIG university neuro dep't for an app't last year. The guard nurse came out and bellowed (it is a big waiting room) TIMOTHY.

As I got up, I said, "What, are you mad at me?" To which everyone in the waiting room busted up. So I said, "Thank you very much, I'll be here all week."

G'nite everybody!
  TimC