Aa
Diagnosis (drum roll...)
I'm almost embarrassed to tell you this after all the limbo horror stories on this forum. I got the diagnosis of MS based on - get this - a careful history and physical/neuro exam, and an MRI with multiple old lesions (and nothing that lit up with Gd). Clear T-Spine MRI, clear C-Spine MRI, clear LP (nada)! Of course every mimic was ruled out.
This is what he told me today: "You've had MS. It's currently not active. Your spasms and weakness and urinary surprises are the sequellae and damage of previous attacks."
So what next? Well, we're dealing with the spasms with Soma and Acupuncture. The urinary surprises I've taken into my own hands since Quix wrote those excellent articles earlier this year. I'll be cracking nutshells soon enough! The weakness, well, I do the best I can with Yoga, and cycling on the flats. We'll discuss DMDs soon.
The old school guys rock!
Pressing On, (and integrating all this info)
Guitar_grrrl
This is what he told me today: "You've had MS. It's currently not active. Your spasms and weakness and urinary surprises are the sequellae and damage of previous attacks."
So what next? Well, we're dealing with the spasms with Soma and Acupuncture. The urinary surprises I've taken into my own hands since Quix wrote those excellent articles earlier this year. I'll be cracking nutshells soon enough! The weakness, well, I do the best I can with Yoga, and cycling on the flats. We'll discuss DMDs soon.
The old school guys rock!
Pressing On, (and integrating all this info)
Guitar_grrrl
Hi,
Sounds like you have a wonderful neurologist, a wonderful attitude. What an inspiration, your post makes me feel sunny. :-)
I hope it all works out for you, (at least you have a good neuro) that has to help.
Take care,
Udkas.
Sounds like you have a wonderful neurologist, a wonderful attitude. What an inspiration, your post makes me feel sunny. :-)
I hope it all works out for you, (at least you have a good neuro) that has to help.
Take care,
Udkas.
I'm sorry to hear that you have MS but glad that you now know how to proceed. I also was dx with very similar test results.
Take care,
ST
Take care,
ST
Your post made me want to do the Snoopy Dance, though it has been some years since I actually lifted off the ground, lol. I won't even say the usual I'm sorry it is MS, because it is what it is. We all just want a name to the madness in our bodies and a plan to move forward.
I am so glad that you have a solid neuro that understands and practices the basics. And that you understand that this is how it is best done. Thank you for that compliment.
And I am more than thrilled to hear that my sagas with bladder PT have helped someone, even just a little bit. That is "my" reason for being. :))
Your post is one we will all be able to point to as both a wonderful example of the diagnostic art and as a great way to approach a "life more bumpy." I agree, your attitude is an inspiration. But, having said that, you likely will have swings down and don't feel like you need to show a brave face here, if they happen.
Well, to the brood!
Quix
To all: Learning new things is definitely going to keep our diseased brains better. It's all about "neuroplasticity." Keep challenging ourselves with new stuff and enjoying our old stuff while not letting our other stuff fall out, lol.
I am so glad that you have a solid neuro that understands and practices the basics. And that you understand that this is how it is best done. Thank you for that compliment.
And I am more than thrilled to hear that my sagas with bladder PT have helped someone, even just a little bit. That is "my" reason for being. :))
Your post is one we will all be able to point to as both a wonderful example of the diagnostic art and as a great way to approach a "life more bumpy." I agree, your attitude is an inspiration. But, having said that, you likely will have swings down and don't feel like you need to show a brave face here, if they happen.
Well, to the brood!
Quix
To all: Learning new things is definitely going to keep our diseased brains better. It's all about "neuroplasticity." Keep challenging ourselves with new stuff and enjoying our old stuff while not letting our other stuff fall out, lol.
> Jen: I'm so glad you're taking up Bass! It's never too late!
I have to wonder if my brain has changed. I've always been interested in music - I played saxophone, clarinet, and bass clarinet in school. But after school, I just didn't care all that much, and stopped playing for years. Recently I became interested in - of all things - playing the washtub bass, and found that I actually have an ear and the rhythm for it.
So really, playing the stand-up bass is just a way for me to play with better musicians! Nobody's hiring washtub bass players. And the stretching of my brain is good for me - even though I don't learn as fast as I used to, I just keep pounding the information in until it sticks.
I have to wonder if my brain has changed. I've always been interested in music - I played saxophone, clarinet, and bass clarinet in school. But after school, I just didn't care all that much, and stopped playing for years. Recently I became interested in - of all things - playing the washtub bass, and found that I actually have an ear and the rhythm for it.
So really, playing the stand-up bass is just a way for me to play with better musicians! Nobody's hiring washtub bass players. And the stretching of my brain is good for me - even though I don't learn as fast as I used to, I just keep pounding the information in until it sticks.
Hi, All,
Thanks for the good thoughts and prayers. My heart goes out to you, too.
Bio: Yes, playing is sometimes a challenge, especially when I play linked barre chords for more than say, 2 measures (ex:Bm to F#7) - my left hand cramps up. Playing tremolo with my right hand has gotten easier when I'm really shakey, though. I just try to relax and let it fly 8^O. The stuff I've been composing tends to keep the left hand moving up and down the fingerboard with minimal tension. I'm a big fan of alternate tunings for really interesting voicings and colors.
Jen: I'm so glad you're taking up Bass! It's never too late! I think the stretch for our brains when we learn music keeps us in shape for all kinds of intellectual endeavors. I get REALLY steamed when public schools drop their music and art programs - they're so essential to the whole child!
My family is obviously upset. They also know I'm pretty resourceful. I won't let MS take up too much of my day, even if I'm having a bad one. As I've said in the past, if anything makes me live "One Day at a Time", MS is one of them. The sun came up today, I got out of bed and went to work - it can't be all bad...
Thanks again,
Guitar_grrrl
Thanks for the good thoughts and prayers. My heart goes out to you, too.
Bio: Yes, playing is sometimes a challenge, especially when I play linked barre chords for more than say, 2 measures (ex:Bm to F#7) - my left hand cramps up. Playing tremolo with my right hand has gotten easier when I'm really shakey, though. I just try to relax and let it fly 8^O. The stuff I've been composing tends to keep the left hand moving up and down the fingerboard with minimal tension. I'm a big fan of alternate tunings for really interesting voicings and colors.
Jen: I'm so glad you're taking up Bass! It's never too late! I think the stretch for our brains when we learn music keeps us in shape for all kinds of intellectual endeavors. I get REALLY steamed when public schools drop their music and art programs - they're so essential to the whole child!
My family is obviously upset. They also know I'm pretty resourceful. I won't let MS take up too much of my day, even if I'm having a bad one. As I've said in the past, if anything makes me live "One Day at a Time", MS is one of them. The sun came up today, I got out of bed and went to work - it can't be all bad...
Thanks again,
Guitar_grrrl
So glad this neuro knows what he is looking at!
The inactivity I disagree with, though he said spoke about discussing DMDs so it appears you are in good hands w/this old school guy. Maybe he meant that nothing lit up w/the administration of contrast on your brain MRI...
You sound to be taking it in stride too and very positive! Yay! I'm so glad you know what you are battling and will now move into the next phase.
ttys,
shell
The inactivity I disagree with, though he said spoke about discussing DMDs so it appears you are in good hands w/this old school guy. Maybe he meant that nothing lit up w/the administration of contrast on your brain MRI...
You sound to be taking it in stride too and very positive! Yay! I'm so glad you know what you are battling and will now move into the next phase.
ttys,
shell
I know I sounded doom and gloom in a different post, but all this testing did show one thing. In the areas that were severely damaged from the compartment syndrome, over the course of a year my body grew new nerves around the damaged nerves. I have nerves that are not in the book because my body compensated for the damage. Plus, the damaged nerve itself is healing.
So if I can grow new nerves in the legs and repair the damaged ones, then I certainly can grow new nerves in the brain and repair other damaged areas, and so can you.
I just wish I knew how to control that consciously. Maybe if I sit and think "grow, grow, grow"...
So if I can grow new nerves in the legs and repair the damaged ones, then I certainly can grow new nerves in the brain and repair other damaged areas, and so can you.
I just wish I knew how to control that consciously. Maybe if I sit and think "grow, grow, grow"...
Hi, I don't believe we have met before. It's been a while since I have been on line. I was DXs 23 + years ago and am still hanging in there.. You are welcome to read my journals if you want... I don't want to take up your time with "my stuff"...(Here in forums)
I am so sorry you have MS, but it doesn't really change anything that you have been living with, except now it has a name and the great thing is there are now some treatments available, they didn't have much in the way of drug treatments back in the early Eighties...
The main thing is to remember MS doesn't define who you are, we all have to adjust to what ever life brings our way, I think of it has finding new ways to do old stuff. We learn to listen to what our body's are telling us, such as, rest when your tired, hold stress at bay as much as possible. Stress will do us in faster than almost any thing else, You aren't ALONE, in fact you are part of the Greatest Support Group, on line.
I'd be lost with out our group, even though lately I haven't been able to check in every often.
So, I am happy to meet you, my thoughts & Prayers are with you.
{{{{~!~}}}} on the winds from me to you
I am so sorry you have MS, but it doesn't really change anything that you have been living with, except now it has a name and the great thing is there are now some treatments available, they didn't have much in the way of drug treatments back in the early Eighties...
The main thing is to remember MS doesn't define who you are, we all have to adjust to what ever life brings our way, I think of it has finding new ways to do old stuff. We learn to listen to what our body's are telling us, such as, rest when your tired, hold stress at bay as much as possible. Stress will do us in faster than almost any thing else, You aren't ALONE, in fact you are part of the Greatest Support Group, on line.
I'd be lost with out our group, even though lately I haven't been able to check in every often.
So, I am happy to meet you, my thoughts & Prayers are with you.
{{{{~!~}}}} on the winds from me to you
How you were diagnosed, is how it is usually done by Neuro's that really know their stuff. He looked carefully at the evidence, the lack of evidence in other disorders and put the puzzle piece where it fit the best.
I am always sorry to hear of someone else being diagnosed, but for the most part sweetheart, so many of us get along just fine, with some bumps in the road.
I really feel that they are getting closer and closer in the medical world to understanding more and more about MS and the clear cut signs that one is afflicted with it. There may be a couple of puzzle pieces missing, but I have always heard that if it walks like a duck, quacks like a duck, swims like a duck....it IS a duck.
I love your positive attitiude. It's contagious. Be prepared for the down days that will ultimately come and remember that's when this Forum gathers together at their strongest; to help those in need. The greatest MS Forum on the Internet, bar none.
Best Wishes and Lots of prayers. Keep smiling. It's contagious, dearheart.
Heather
I am always sorry to hear of someone else being diagnosed, but for the most part sweetheart, so many of us get along just fine, with some bumps in the road.
I really feel that they are getting closer and closer in the medical world to understanding more and more about MS and the clear cut signs that one is afflicted with it. There may be a couple of puzzle pieces missing, but I have always heard that if it walks like a duck, quacks like a duck, swims like a duck....it IS a duck.
I love your positive attitiude. It's contagious. Be prepared for the down days that will ultimately come and remember that's when this Forum gathers together at their strongest; to help those in need. The greatest MS Forum on the Internet, bar none.
Best Wishes and Lots of prayers. Keep smiling. It's contagious, dearheart.
Heather
>>The old school guys rock!
indeed they do!!!
happy for you! you and your neuro are an inspiration to the forum and others. talent, education, wisdom & common sense, who would have thunk in this day and age, especially in the field of neuros.
great climb & enjoy the view...best of luck with the lifestyle management options.
Cheers to your health & Rock-On
indeed they do!!!
happy for you! you and your neuro are an inspiration to the forum and others. talent, education, wisdom & common sense, who would have thunk in this day and age, especially in the field of neuros.
great climb & enjoy the view...best of luck with the lifestyle management options.
Cheers to your health & Rock-On
I have been learning to play the upright bass, and I do have some problems with my right index being weak - but I've also realized that part of it is because I'm just learning. The finger would respond more quickly if I didn't have neurological damage, but it would also respond more quickly if I knew what I was doing! I figure I'm training the brain to grow new nerves to that finger, and I'm building muscle, which requires nerves to fire, so it's all good.
I almost hate to say this, but I'm so relieved because your last post that mentioned upper motor neuron diseases had me worried. Bladder stuff doesn't usually show up early in those, so this sounds so much more right (and, for what it's worth, better!).
Love your neuro. Bless the man.
I'm wondering how any of this has affected your fingerwork. Have you noticed any difference? I find that I can still type, but when I try to play the piano, I flub where I used not to flub, ever.
Again, what a great neuro, and glad you can pack up your guitar and leave limboland.
Bio
Love your neuro. Bless the man.
I'm wondering how any of this has affected your fingerwork. Have you noticed any difference? I find that I can still type, but when I try to play the piano, I flub where I used not to flub, ever.
Again, what a great neuro, and glad you can pack up your guitar and leave limboland.
Bio
Hi GiGi, Well you made it to the top of the mountain - how does the view look now? This has been quite the climb for you and it does my heart good to hear of another neuro like mine who has the kahunnas to call it MS and not drag this on and on.
I am of course sorry you have MS, but at least now your enemy has a name and you can fight the informed battle rather than tilting at windmills in the dark.
Acupuncture? I love it. I've been going for a couple months now and would love to compare notes with you some time. Massage, yoga and tai chi are great tools too. I'm glad to hear a DMD is going to fit into the picture. You sure don't want this to raise up and cause more permanent damage if you can possibly halt it.
Wishing you well,
Lulu
I am of course sorry you have MS, but at least now your enemy has a name and you can fight the informed battle rather than tilting at windmills in the dark.
Acupuncture? I love it. I've been going for a couple months now and would love to compare notes with you some time. Massage, yoga and tai chi are great tools too. I'm glad to hear a DMD is going to fit into the picture. You sure don't want this to raise up and cause more permanent damage if you can possibly halt it.
Wishing you well,
Lulu
Congrats on the diagnosis. Sorry that it's MS but glad you got a dx. My neuro is also old school guy and I received my dx with a very similar workup and results.
Welcome to the other side. I haven't been dx long (4/13/09) so can't offer a whole lot except support.
Ren
Welcome to the other side. I haven't been dx long (4/13/09) so can't offer a whole lot except support.
Ren
Wow! I'm sorry that you have the MS diagnosis, but how nice to know that there are doctors out there who appear to have good sense. I'm glad that you can now proceed with the DMDs. It sounds like you are dealing with your symptoms well. Please take care of yourself while you process all this info.
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