Aa
Newby in Limbo = Howdy
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
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
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.
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.
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
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
... 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!
Hang on!
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
Hanging on,
TimC
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
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