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

[MisterTimC]

Aha! I found an old email in my Gmail, that led me back here. It took a total of 9 years, but we have the answer: My mysterious WhatIsIt is not MS, ALS, Transverse Myelitis, Claudication. The weird zapping in my head cleared up, so I think that was due to bad reaction to Cymbalta (my theory - which none of my doctors will comment on.) It turns out that my increasing muscle weakness is Post-Polio Syndrome. That nasty virus I had when I was 3? Yep, polio. Totally weird, but I'm learning to live with it.  

[MisterTimC]

Sometimes it kind of takes awhile for a question to gel out of a conversation with a Dr. Maybe this should have made sense to me earlier, but oh well, my brain does seem a bit foggy at times.

Dr. Neuro said that my brain MRI (1.5T w/out gad) showed two white spots, but that's normal for a 59 y.o. male. But, I've had two attacks of leg wobbliness in the last 15 months. The second event, which started about 3 months ago, and which seems to possibly be tapering off a little bit, has included brain events of zzapps, tinnitus and dizziness from eye tracking coordination problems.

One plus one might be two, but then again it might not. Right? Wrong? Don't know?
TimC

[MisterTimC]

OK. And even now, it's hard for this new Dr. to get the reports from the other clinic from 9 months ago; it would have been helpful if I had them.

Thanks, Lulu.

[Lulu54]

Be sure to get all those test copies - and keep them forever.  You never know if something will return down the road and often those tests are crucial but not kept.

best, Lulu

[MisterTimC]

Well, it's been an interesting week. Neuro app't on Monday, Physical Therapy on Wed and Neuro again today (Friday) for the nerve conduction study. The results of the nerve study were normal.

Overall, I've slowly been feeling better after a not-so-good several days last weekend and before. So at this point he's not seeing definite signs that point him in any particular. He said that they could do a DNA test to see if I've got a congenital reason for the ataxia, but that it's a really expensive test, so I don't think I want to go there. And I don't see how that would explain the rest of my stupid symptoms.

Since he said that my brain MRI looked normal, today I asked him. "What's the difference between a normal MRI for a 59 year old versus a 25 year old." He said that at 59 there is normally some brain shrinkage and some white spots. I asked him how many white spots, and he said I have two. We agreed that I would come back in a month unless I start feeling really worse, in which case, there might be something more interesting to test. But right now, there really isn't. Maybe this wave is receding and will never come back. I suppose I can hope.

I suppose I ought to get copies of those records. I could also get a CD with the brain MRI; I'm sure it would be definitely cool but I'm quite sure that I wouldn't have a clue of what I would be seeing.

So, since I'm feeling stronger, and walking a bit better the last few days, I'm fine with not having any dx right now. On the other hand, I know that when I feel lousy I sure wish I had a clue as to what was going on.

But oh well.

[drsdonthelp]

In the beginning we dread hearing those words.... " You have MS" sounds so scary at first,  but after years of no dx. and you already  know what it is, you don't care if they say"You have MS" At least its a name to your problem you have been dealing with for so long
Good luck to you,, I am a limbolander too !!
Pamela

[MisterTimC]

Good news, bad news, I don't which is which.

Last Monday the Rheumatologist was very nice and concerned, but she said that my symptoms were not in her area. But she knows my Neurologist and has worked with him on other interesting cases and requested a CPK and Vit D blood tests, because that would help him.

I went thru the list of symptoms with a Physical Therapist on Thursday and she said that she would give me exercises "like her MS patients." So it looks at least similar to MS to her.

On Saturday, I kind of over-did it and was really wiped out.

And today (Monday) I saw the Neuro for the second time. He said, "The MRI of my head looked normal, so you don't have MS."  And the Rheumies' blood tests were normal.

I told him that I really don't care what the diagnosis is, but going on and on without any diagnosis is a real drag. And he said that he understood that, but sometimes it takes awhile to figure these things out. I'll give him the benefit of the doubt as he's just getting started with me.

But the records from OHSU from last winter had not arrived yet even though the request went out two weeks ago. So he would send a second request. So then we went thru the list of symptoms again, and he requested a second EEG which will be on Friday.

So I'm still wandering around in limboland with a long list of symptoms that look and feel like MS.

Oh well.

[MisterTimC]

So, yeah, I had to leave the Friday morning Chamber of Commerce networking meeting because I couldn't stand up for more than 10 minutes. Dang! I'm probably leaving business behind, but I CAN"T STINKING STAND UP! And I'm so stinking afraid of bringing out the wheelchair. I use it to go do the shopping where I can be incognito and don't run into hardly anyone that I know , but I can't make myself use it at a business meeting.

I'm hoping that this episode will pass and I'll feel better and be able to get about my business. I don't know which way will be better for business, either on my feet with a cane (and leaving early) or staying longer at the meeting in my wheelchair without a real dx. "Hey, what's wrong with you?" Sometimes I want to scream. Limboland *****. Just calling it the way I see it. (It wasn't that long ago that I was refereeing soccer matches - oh, OK, maybe it was a while ago.)

So I have an app't with a Rheumatologist tomorrow. I suppose I'll go down the list of symptoms, and yes, I have prepared my summarized list of symptoms. And I'll ask, what do you think could be going on?  And she'll say, "Let's get all of your records, and see what else we need to test."

TimC

[MisterTimC]

... feeling like poop - with no dx. I know many people have been there. It would be nice if they could figure out something. It's not like I've got tons of anxiety about this, I'm not really afraid of any dx - other than no dx. I'm hoping they find something relatively simple - but this waiting is frustrating. Oh, well. I guess there's not much I can do about that tonight. So I better get to bed. Maybe I won't have to leave the networking meeting tomorrow morning early because I can't stand up.

Hang on!

[MisterTimC]

Got the brain MRI done today. The followup app't with the neuro is in 10 days. I have an app't with a Rheumatologist on Nov 1. It's been a wild ride; still dizzy, wobbly and feel like poop.

Hanging on,
TimC

[MisterTimC]

So last night, I was reading thru more of the Health Pages and came to, "What I want my family and friends to know"

http://www.medhelp.org/user_journals/show/5699/MS-challenge-for-life-

It's an absolute "Must Read" if you have any family or friends who don't understand what you're going thru.
  TimC

[Quixotic1]

Tim, the version at my med school was:

Common things are common.

Q

[essdipity]

Yes, we've had so many ducks and zebras here, not to mention other critters, that we could start a zoo.

Good luck,
ess

[MisterTimC]

So I went to my PCP this morning because I had scratched open a mole on my back and I just couldn't see what was going on. He said that it was fine and then asked me about my other app'ts.

I told him the neuro had requested the MRI (which I hope will happen soon) and that my spine Dr. had referred me to a rheumatologist to see what she thinks. My PCP then said something which is very familiar to all residents of this forum; and I quote, "There are two old sayings. One is 'If it looks like a duck, walks like a duck, and quacks like a duck, it's probably a duck.' The other saying is: "If you hear hoof beats, think horses, not zebras.' They're looking for zebras."

Hmmmm....

As stated elsewhere, it's great to have a great PCP on your team.

TimC

[Quixotic1]

Thanks, Tim.  Actually most of us on this forum feel that it is rare there is a "Best" answer and that our best information comes from the accumulated answers of many members.  No "has" to chose though anyone "can" chose.

We really try to keep the spirit of competition out of the forum.

I'm glad you like the Health Pages.  I am very proud of them.  They have been a collective effort.

I have to say that I am impressed at your neuro who didn't dismiss you while you were feeling okay, but homed in on your past episodes.  That is great news.  You may have skipped directly to a great neurologist.  What luck!

Quix

[MisterTimC]

What? Medhelp says I'm supposed to pick a best answer? Yeah, right. I appreciate everyone's greeting and responses. Although, it is true that DocQ provided some very valuable information, so I guess she gets my vote. I think she gets everyone's vote.

As for my app'ts this last week, CT of my kidneys revealed a benign cyst that gets no respect. When I went to my first app't with the new neuro the old body was feeling OK, but he was concerned about the past symptoms and ataxia. So he's requesting all my results from OHSU from last winter and has requested a brain MRI which will hopefully be scheduled this week. It was a short 'consultation' app't so not much time for questions, but there will be a followup so I hope we'll make some progress on figuring out what's wrong.

Meanwhile, I'm still working on reading more of those Health Pages == Good stuff!
  TimC

[Quixotic1]

http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879

Quix

[MisterTimC]

The online OHSU MyChart has the results split up into various groups. Is this the batch you're looking for?

Component                         Your Value  Standard Range   Units
OLIGOCLONAL BANDS SF   Negative
IGG SERUM-OLI                   962           768 - 1632           mg/dL
IGG CSF - OLI                      3.2             < 6.1                  mg/dL
ALBUMIN, SERUM-OLI         4840          3500 - 5200         mg/dL
ALBUMIN, CSF-OLI               30             < 36                   mg/dL
ALBUMIN INDEX-OLI             6.2            < 9.1                  ratio
IGG INDEX-OLI                     0.54           0.28 - 0.66          ratio
CSF/IGG ALBUMIN RATIO    0.11           0.09 - 0.25          ratio
IGG SYN RATE                   < 0.0          < 8.1                   mg/d

Thank you for looking at my numbers; I find it helps reduce my stress level to have someone who is knowledgeable say "CSF is totally normal". All of this looks pretty normal to me, too.

I looked for "Lies My Neuro Told Me" and didn't find it, but I found the articles on Conversion Disorder to be enlightening.

Thanks again, now get back to those dreaded taxes. (I've had a CPA do mine for years; such a wonderful stress relief!)
  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