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
Hi MisterTim,
Welcome to the forum. This is a wonderful place to get input to what you are going through. We have all been there and always have questions and everyone here are more than willing to give advice. This is an amazing forum, and you will find a new family here. :)
I can't add to the wonderful advice everyone has already offered to you. I just want you to know that you are not alone in this journey, we have all been there or are there right now.
I know the feeling of wanting to cut your leg off lol. I said to myself one time that I was just going to ask to have my leg amputated to make the pain go away then I said well then it will move to the other leg, cut it off and then my arms and I would end up a torso with a head attached so I thought better of it lmao.
Anyway I hope you get in to see a neuro much sooner than February, that is entirely to long to wait. Hang out here with us and let us know wha is happening.
Take Care,
Paula
Welcome to the forum. This is a wonderful place to get input to what you are going through. We have all been there and always have questions and everyone here are more than willing to give advice. This is an amazing forum, and you will find a new family here. :)
I can't add to the wonderful advice everyone has already offered to you. I just want you to know that you are not alone in this journey, we have all been there or are there right now.
I know the feeling of wanting to cut your leg off lol. I said to myself one time that I was just going to ask to have my leg amputated to make the pain go away then I said well then it will move to the other leg, cut it off and then my arms and I would end up a torso with a head attached so I thought better of it lmao.
Anyway I hope you get in to see a neuro much sooner than February, that is entirely to long to wait. Hang out here with us and let us know wha is happening.
Take Care,
Paula
So sorry for what you've been through in the past couple of years Tim. I am pretty new to this forum as well and thought I was dx with MS in Feb 2010, but then a 2nd neuro said "possible MS " and the first one waffled....so I don't know what I am....but I do know that I'm treating at the advice of all docs. AND getting more tests done.
Have you had an MRI of your brain? MY primary care doc ordered that when he heard my symptoms - then I had it to take with me for my first neuro visit. One thing I have discovered through all of this is that we have to be our own advocates and ask for what we want and need ...and (hard part for me) NOT be timid about it.
Sounds like you are doing all that - but it would be nice if you could get into a neuro sooner than Feb!
I am loving this site as well - find the comments informative, uplifting and funny (thanks for the humor Tim)
Good luck to you!
Have you had an MRI of your brain? MY primary care doc ordered that when he heard my symptoms - then I had it to take with me for my first neuro visit. One thing I have discovered through all of this is that we have to be our own advocates and ask for what we want and need ...and (hard part for me) NOT be timid about it.
Sounds like you are doing all that - but it would be nice if you could get into a neuro sooner than Feb!
I am loving this site as well - find the comments informative, uplifting and funny (thanks for the humor Tim)
Good luck to you!
Hi MisterTimC!
Welcome to the forum and the crazy land of limbo!
I sooooooooooooo feel for you with the waiting thing.
I've been in limbo for months now and my symptoms tend to come and go in about 6 week spurts, so by the time i've gotten to see anyone who specializes in whatever it is that is going on, it has usually resolved! Try to push for sooner dates wherever possible and you are always within your rights to call for cancellations.
I wish you all the best of luck in your pursuits and look forward to more posts from you along the way....love the sense of humour!!
michelle
Welcome to the forum and the crazy land of limbo!
I sooooooooooooo feel for you with the waiting thing.
I've been in limbo for months now and my symptoms tend to come and go in about 6 week spurts, so by the time i've gotten to see anyone who specializes in whatever it is that is going on, it has usually resolved! Try to push for sooner dates wherever possible and you are always within your rights to call for cancellations.
I wish you all the best of luck in your pursuits and look forward to more posts from you along the way....love the sense of humour!!
michelle
Hi! I'm new here too, and just wanted to welcome you to the forum, newbie to newbie.
You've been through so much in the last couple years. I'm sorry for the reasons you're here, but so glad that you found us. The support here is just incredible.
I can't say much that Tonya, Sarah, Shelly, and Lulu haven't said, but might I add that I love your wicked sense of humor? I tend to use humor to cope, and my husband just shakes his head like "How can you joke about this?". I do take it seriously, but humor helps me put it in perspective.
Glad you joined us,
Melissa
You've been through so much in the last couple years. I'm sorry for the reasons you're here, but so glad that you found us. The support here is just incredible.
I can't say much that Tonya, Sarah, Shelly, and Lulu haven't said, but might I add that I love your wicked sense of humor? I tend to use humor to cope, and my husband just shakes his head like "How can you joke about this?". I do take it seriously, but humor helps me put it in perspective.
Glad you joined us,
Melissa
Whatever IT is deserves a name.
You need to know Whatever IT is to get treatment, whatever that might be.
How frustrating for you to wait until February. Is this a special neurologist that there is such a lengthy wait to get in? If not, I would look into getting seen by someone else who can squeeze you in sooner. I know there is such a shortage of neuros, especially good ones. A long wait for a first appt. is unfortuantely not that unusual.
Shell mentions tests - be sure to gather up all your test results and keep copies. They come in handy, especially when you are switching doctors and have a lengthy time of working through the symptoms.
I'm sorry about the collapse of your relationship -that has to be extremely difficult and added to the stress.
If you read the HP's you will see the positive o-bands are not a requirement for MS dx. This is another one of Q's brilliant pieces.
You're so right - we are indeed fortunate to have her here among us, even though she is cursed with this MiSerable disease, herself. She is our ultimate expert here and holds this place together with her information and her wit. Keep reading her work and you will see why she is the best of the best.
While you're waiting for the next round of doctor appts, whenever that might be, be sure and stick around. Ask questions. Rant. Banter and joke. All are appropriate here.
Welcome to this special place.
be well,
Lulu
You need to know Whatever IT is to get treatment, whatever that might be.
How frustrating for you to wait until February. Is this a special neurologist that there is such a lengthy wait to get in? If not, I would look into getting seen by someone else who can squeeze you in sooner. I know there is such a shortage of neuros, especially good ones. A long wait for a first appt. is unfortuantely not that unusual.
Shell mentions tests - be sure to gather up all your test results and keep copies. They come in handy, especially when you are switching doctors and have a lengthy time of working through the symptoms.
I'm sorry about the collapse of your relationship -that has to be extremely difficult and added to the stress.
If you read the HP's you will see the positive o-bands are not a requirement for MS dx. This is another one of Q's brilliant pieces.
You're so right - we are indeed fortunate to have her here among us, even though she is cursed with this MiSerable disease, herself. She is our ultimate expert here and holds this place together with her information and her wit. Keep reading her work and you will see why she is the best of the best.
While you're waiting for the next round of doctor appts, whenever that might be, be sure and stick around. Ask questions. Rant. Banter and joke. All are appropriate here.
Welcome to this special place.
be well,
Lulu
Hi there,
Welcome. Well, you must be going insane w/all your bottled up energy. It's nice to read about your life before as you refer to as "whatever" entered the picture.
It's something we encourage people to describe to doctors. They simply need to know who you were before all this happened. I find so many similarities in your story, i.e., chalking your problems off to something you did, or took, etc. I swore myself if I just stopped smoking, got some rest, ate right, I'd be fine! I just knew I could fix it, hahah I couldn't of been more wrong. My monster took months to chill the heck out to a bearable level.
Feb is a long way off and your exactly on track w/what you are doing. You've given a chronology of events, your going to hit up your MD for a chance of being seen sooner and of course.....you joined us! Doc Q is wonderful isn't she. I know she and all of us appreciate your thoughts of our forum. We think we are special - you'll find a garden variety of characters and experiences and talents among us. So ask anything!
Do you have any copies of the testing run on you in the past? Especially the spinal tap? You mention on O-bands, but something was out of range, and I'm wondering what the protein said. Any imagine done of your CNS?
Thanks for joining us!
-Shelly
p.s. agree 1st base definitely rots -- 3rd base rules!
Welcome. Well, you must be going insane w/all your bottled up energy. It's nice to read about your life before as you refer to as "whatever" entered the picture.
It's something we encourage people to describe to doctors. They simply need to know who you were before all this happened. I find so many similarities in your story, i.e., chalking your problems off to something you did, or took, etc. I swore myself if I just stopped smoking, got some rest, ate right, I'd be fine! I just knew I could fix it, hahah I couldn't of been more wrong. My monster took months to chill the heck out to a bearable level.
Feb is a long way off and your exactly on track w/what you are doing. You've given a chronology of events, your going to hit up your MD for a chance of being seen sooner and of course.....you joined us! Doc Q is wonderful isn't she. I know she and all of us appreciate your thoughts of our forum. We think we are special - you'll find a garden variety of characters and experiences and talents among us. So ask anything!
Do you have any copies of the testing run on you in the past? Especially the spinal tap? You mention on O-bands, but something was out of range, and I'm wondering what the protein said. Any imagine done of your CNS?
Thanks for joining us!
-Shelly
p.s. agree 1st base definitely rots -- 3rd base rules!
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