lilc
06-11-2005, 01:30 PM
1. Since I know that my tingling arms are not a result of any sort of spinal compression, I'm wondering if there is medication that can make it go away or do I just have to live with it until it (hopefully) goes away on it's own? 3 months now, I am getting very cranky about it...
2. Are difficulty focusing my eyes and excessive watering worth mentioning to the neurologist?
3. I've finally reached a point in my life where my ability to earn a living depends on my mind and not my back. The notion of "cognitive difficulty" is very frightening to me. I've always considered myself to be articulate and capable of conveying my thoughts clearly when speaking. Yet lately I find myself stalling out, unable to get the words in my mind out of my mouth. My greatest fear is that I may lose the ability to think analytically. What sorts of experiences have others had?
Thank you all, again. My next appt. is this coming Thursday, will report!
2. Are difficulty focusing my eyes and excessive watering worth mentioning to the neurologist?
3. I've finally reached a point in my life where my ability to earn a living depends on my mind and not my back. The notion of "cognitive difficulty" is very frightening to me. I've always considered myself to be articulate and capable of conveying my thoughts clearly when speaking. Yet lately I find myself stalling out, unable to get the words in my mind out of my mouth. My greatest fear is that I may lose the ability to think analytically. What sorts of experiences have others had?
Thank you all, again. My next appt. is this coming Thursday, will report!
Sponsor
KelliD
06-11-2005, 08:14 PM
Hi Lilc! Talk to your neuro about ALL of these issues. Never leave any stone unturned. Have you seen a neuro-opthalmologist? Might be worth discussing, given the issues with your eyes. Re: cognitive function..I have experienced exactly what you describe. It is doubly troubling because I work as a radio announcer for a living and when the words won't come it's hard to recover in a light-hearted way for the listeners. I asked my Neuro what could be done. He said you just take a breath, then start over. There's SO much they don't know about MS. I wish it were a tangible adversary - I'd feel so much better if I could physically knock it on its rear-end. Ha! ha! 1. Since I know that my tingling arms are not a result of any sort of spinal compression, I'm wondering if there is medication that can make it go away or do I just have to live with it until it (hopefully) goes away on it's own? 3 months now, I am getting very cranky about it...
2. Are difficulty focusing my eyes and excessive watering worth mentioning to the neurologist?
3. I've finally reached a point in my life where my ability to earn a living depends on my mind and not my back. The notion of "cognitive difficulty" is very frightening to me. I've always considered myself to be articulate and capable of conveying my thoughts clearly when speaking. Yet lately I find myself stalling out, unable to get the words in my mind out of my mouth. My greatest fear is that I may lose the ability to think analytically. What sorts of experiences have others had?
Thank you all, again. My next appt. is this coming Thursday, will report!
2. Are difficulty focusing my eyes and excessive watering worth mentioning to the neurologist?
3. I've finally reached a point in my life where my ability to earn a living depends on my mind and not my back. The notion of "cognitive difficulty" is very frightening to me. I've always considered myself to be articulate and capable of conveying my thoughts clearly when speaking. Yet lately I find myself stalling out, unable to get the words in my mind out of my mouth. My greatest fear is that I may lose the ability to think analytically. What sorts of experiences have others had?
Thank you all, again. My next appt. is this coming Thursday, will report!
lilc
06-11-2005, 10:13 PM
Kelli, I almost cried when I read your response. I started doing radio announcing about 3 years ago, it is the thing I love to do more than anything else. I'm pretty sure I was born to do it - my last name is Rock! [I'm sitting here for a long time, thinking about how much I want to say.] I was a DJ for a small, struggling station. I'm a white girl who plays Black Gospel, and I seem to have a gift for it. The station is not on the air right now, and I miss it so much. But lately I've been wondering if I could do it again given the chance. Please, please, please keep on working. I was always very critical of my shows. Everyone told me they didn't notice my screw-ups, I just kept going or started over, it is LIVE, after all!
I can't thank you enough for being here. I haven't told anyone how bad the last couple of weeks have been. A couple of people know I'm going through tests regarding L'Hermittes, but I can't tell them that I sometimes lose my right arm for a while, or that the tingle is constant now, or how painful it is to lift my arms, etc. OK, no boo-hooing! Just thanks. I'm keeping you in my prayers.
I can't thank you enough for being here. I haven't told anyone how bad the last couple of weeks have been. A couple of people know I'm going through tests regarding L'Hermittes, but I can't tell them that I sometimes lose my right arm for a while, or that the tingle is constant now, or how painful it is to lift my arms, etc. OK, no boo-hooing! Just thanks. I'm keeping you in my prayers.
KelliD
06-12-2005, 02:38 AM
Hey Lilc! For real? You're in radio!!? I work for a contemporary Christian station and love it. The management has been soooooo understanding of the MS issues and each staffer has logged onto a site where I directed them to learn more about this unseen thief. What a blessing!
Anyway....I want to encourage you NOT to give up your dreams! MS may slow us down, but it can't steal what is in our hearts!!
Sometimes when I am on the air, it's as if my mind and mouth fall out of sync with each other...and trying to spit out the words that my brain struggles to motivate my tongue to speak is sometimes like looking directly at a clock and STILL not being able to say what time it is. Does that make sense? Has your Neuro said what he or she may suggest doing for such a flare-up?
Anyway....I want to encourage you NOT to give up your dreams! MS may slow us down, but it can't steal what is in our hearts!!
Sometimes when I am on the air, it's as if my mind and mouth fall out of sync with each other...and trying to spit out the words that my brain struggles to motivate my tongue to speak is sometimes like looking directly at a clock and STILL not being able to say what time it is. Does that make sense? Has your Neuro said what he or she may suggest doing for such a flare-up?
lilc
06-12-2005, 12:00 PM
Kelli, God is GOOD!!! :bouncing: When the station is back on the air, there is no amount of fear that can keep me away from it, this desire of my heart is just too strong. I travel a lot, what market are you in? I'd love to be able to "look you up" on the air!
My next neuro appt is this Thursday, I think I need to write down all the things I need to discuss with her so that I don't forget something. I'll certainly keep you posted!
Oh, and the clock analogy makes perfect sense, so frustrating...
My next neuro appt is this Thursday, I think I need to write down all the things I need to discuss with her so that I don't forget something. I'll certainly keep you posted!
Oh, and the clock analogy makes perfect sense, so frustrating...
KelliD
06-12-2005, 12:53 PM
Hey Lilc...I'm in the Indianapolis market - WGNR. Where are you?
Are you happy with your neuro? Do you feel like she truly listens, takes your concerns seriously and addresses them appropriately?
I am pleased with my neurologist. He is very up front about the fact that so little is known about the brain and CNS, but very encouraging at the same time by reminding me that the medical community has made great strides in researching and treating MS. He is optimistic that we will see much better treatment within the next 5 to 10 years..and is hopeful that a cure isn't far behind. I'm ready!!!
Are you happy with your neuro? Do you feel like she truly listens, takes your concerns seriously and addresses them appropriately?
I am pleased with my neurologist. He is very up front about the fact that so little is known about the brain and CNS, but very encouraging at the same time by reminding me that the medical community has made great strides in researching and treating MS. He is optimistic that we will see much better treatment within the next 5 to 10 years..and is hopeful that a cure isn't far behind. I'm ready!!!
lilc
06-12-2005, 01:22 PM
Kelli - I am in Phoenix, KIDR. (Ironic - I lived 40+ years in Minnesota, finally got to move to the climate I love, now the heat is unbearable!) My situation is kinda funny, I LIVE in Phoenix, I WORK in Washington, DC. Doing consulting for a very small firm (my best friend and me, basically) and we are trying to grow the business to a point where we don't have to work 7 days a week, 18 hours a day. Yes, I like my neuro so far. She suggested I might want to get a regular job to cut down on stress! Problem is I wouldn't be able to afford her if I got a "regular job" right now, so I try to manage the stress.
It is a blessing, however, that I spend most of my time in an area with so very much, very good medical care - Phoenix is terrible. I'm doing all of my medical stuff in DC/Virginia. I've been happy with the tests she has ordered, we have discussed medication and she let's me make decisions. And she chuckles at my jokes - this scores big points with me! I have to be able to laugh...
I really feel for the folks who have dismissive neuros, as if they didn't already feel crazy enough. Mine is young, perhaps she hasn't had time to become arrogant, but whatever the reason she makes me feel respected. Sounds like you have that, too. I'm guessing the better neuros recognize they are always learning and consider us (patients) to be tools in that process.
It is a blessing, however, that I spend most of my time in an area with so very much, very good medical care - Phoenix is terrible. I'm doing all of my medical stuff in DC/Virginia. I've been happy with the tests she has ordered, we have discussed medication and she let's me make decisions. And she chuckles at my jokes - this scores big points with me! I have to be able to laugh...
I really feel for the folks who have dismissive neuros, as if they didn't already feel crazy enough. Mine is young, perhaps she hasn't had time to become arrogant, but whatever the reason she makes me feel respected. Sounds like you have that, too. I'm guessing the better neuros recognize they are always learning and consider us (patients) to be tools in that process.
KelliD
06-12-2005, 01:43 PM
Lilc - I used to vacation in Minnesota and always said if I could make a decent living there(the north woods), I'd move in a heartbeat! BEAUTIFUL state!!!
Do your long work hours and travel affect the MS? The more tired I am, the more I am likely to slur my words, or not be able to form them altogether.
I was supposed to travel to Africa through my job this fall, but after looking into the specs on the trip, we all mutually decided that equatorial Africa might be the best idea for someone dx'd with MS. I travel here at home..but only in short hops. It seems like when I get tired these days, it takes several days to overcome it.
Do your long work hours and travel affect the MS? The more tired I am, the more I am likely to slur my words, or not be able to form them altogether.
I was supposed to travel to Africa through my job this fall, but after looking into the specs on the trip, we all mutually decided that equatorial Africa might be the best idea for someone dx'd with MS. I travel here at home..but only in short hops. It seems like when I get tired these days, it takes several days to overcome it.
KelliD
06-12-2005, 01:44 PM
I MEANT to say equatorial Africa might NOT be the best idea....Lilc - I used to vacation in Minnesota and always said if I could make a decent living there(the north woods), I'd move in a heartbeat! BEAUTIFUL state!!!
Do your long work hours and travel affect the MS? The more tired I am, the more I am likely to slur my words, or not be able to form them altogether.
I was supposed to travel to Africa through my job this fall, but after looking into the specs on the trip, we all mutually decided that equatorial Africa might be the best idea for someone dx'd with MS. I travel here at home..but only in short hops. It seems like when I get tired these days, it takes several days to overcome it.
Do your long work hours and travel affect the MS? The more tired I am, the more I am likely to slur my words, or not be able to form them altogether.
I was supposed to travel to Africa through my job this fall, but after looking into the specs on the trip, we all mutually decided that equatorial Africa might be the best idea for someone dx'd with MS. I travel here at home..but only in short hops. It seems like when I get tired these days, it takes several days to overcome it.
lilc
06-13-2005, 01:57 PM
Kelli, I'm still working on getting a definite dx. This is all pretty new to me. Much has changed since I saw neuro 6 weeks ago. At that time we were trying to figure out L'Hermittes with other minor symptoms. Since then I've had brain MRI w & w/o contrast, and I have the copies to bring to my appt Thursday. There are 3 white spots on the "T2flair/90" slice that has that "dog-bone" or "X" shape prominently featured - but I'm not a neurologist...More significant to me is that my symptoms have dramatically worsened (before I had the MRI).
I'm trying to be careful to not induce symptoms by reading about them and wondering if I have them, rather I have researched only those things that are truly bothering me.
On Thursday I am having EEG and EMG, and of course will discuss the MRI. It is possible I do not have MS. It seems pretty clear, however, that I'm having CNS problems that at least mimic MS. And yes, long hours and cross-country "red-eye" flights have been increasingly rough the past couple of months! (I hate meetings the first day back in DC, I can barely talk at all...)
I want to be very clear in that I admire and respect all of you who HAVE been dx'd and have been dealing with these symptoms for any amount of time. I'm kinda old to be suddenly hit with this stuff - it started 2 weeks before my 48th birthday - and I will not pretend I have any personal insight into anything beyond the few symptoms I'm having. They are just scary to me, and it helps immensely to know I am not the only one with these (rather strange!) problems!
Whatever the outcome, whenever I get it, I will share, as I cannot express my gratitude enough.
Oh, and I'm glad you chose to pass on equatorial Africa! Do a Boundary Waters trip instead!
I'm trying to be careful to not induce symptoms by reading about them and wondering if I have them, rather I have researched only those things that are truly bothering me.
On Thursday I am having EEG and EMG, and of course will discuss the MRI. It is possible I do not have MS. It seems pretty clear, however, that I'm having CNS problems that at least mimic MS. And yes, long hours and cross-country "red-eye" flights have been increasingly rough the past couple of months! (I hate meetings the first day back in DC, I can barely talk at all...)
I want to be very clear in that I admire and respect all of you who HAVE been dx'd and have been dealing with these symptoms for any amount of time. I'm kinda old to be suddenly hit with this stuff - it started 2 weeks before my 48th birthday - and I will not pretend I have any personal insight into anything beyond the few symptoms I'm having. They are just scary to me, and it helps immensely to know I am not the only one with these (rather strange!) problems!
Whatever the outcome, whenever I get it, I will share, as I cannot express my gratitude enough.
Oh, and I'm glad you chose to pass on equatorial Africa! Do a Boundary Waters trip instead!
Lisa_P
06-13-2005, 02:18 PM
The notion of "cognitive difficulty" is very frightening to me. I've always considered myself to be articulate and capable of conveying my thoughts clearly when speaking. Yet lately I find myself stalling out, unable to get the words in my mind out of my mouth. My greatest fear is that I may lose the ability to think analytically.
You stated this quite eloquently. I have always been a writer. I worked with an arts center for a while and the grantwriter nicknamed me "the wordsmith" because of my phraseology, my abilities to just have the right word on the "tip of my tongue." It's just abhorrent to reconcile the fact of my cognitive "inefficiencies" with that person I knew as ME. I rarely even read nowadays. Forget the unrelenting fatigue or the stubling or any other physical manifestation, it is THIS loss of my SELF that has been the worst.
You stated this quite eloquently. I have always been a writer. I worked with an arts center for a while and the grantwriter nicknamed me "the wordsmith" because of my phraseology, my abilities to just have the right word on the "tip of my tongue." It's just abhorrent to reconcile the fact of my cognitive "inefficiencies" with that person I knew as ME. I rarely even read nowadays. Forget the unrelenting fatigue or the stubling or any other physical manifestation, it is THIS loss of my SELF that has been the worst.
lilc
06-13-2005, 02:29 PM
Thank you, I am grateful that I can take as long as I need when WRITING! It just isn't as much fun as it used to be. Do you have any "good spells"?
Lisa_P
06-13-2005, 02:35 PM
I can't really remember "good spells." Every now and then I'll get a spurt of inspiration and part of a poem will be written down. But usually... no.