Re: Restless legs/Tracie

[Guest guest]

,

Can you get a copy of those MRI's. I'd hand carry them to the MD and the Neurosurgeon.

This is bullshit- you're right. So, like , you're stuck with having to do 6 wks of PT, and as you said- then raise holyhell.

This whole system is ridiculous. Are you stuck with an HMO Medicare plan?

Vanderbilt needs to have someone screaming at them, and regardless of the fact you're overweight (hell, we all are thanks to the Years on prednisone.) you still need help.

You know me, I'm all for doing what we can to make our situation better, including diet and exercise. I know we have to start somewhere-- but until we have some control over the pain, the energy to diet or to exercise is a moot point.

So, here is what you'll do. You call and let those bozo's that didn't send the actual MRI films to the neurosurgeon know that you will be by to pick them up.

Call the neurosurgeons office and let them know that you will be in with them-- and expect to go over them with the surgeon. Don't be put off. Let them know that waiting another 6 wks to do this part is not acceptable. His office should have made sure that they had those films. How the hell can he be expected (or she) to make a decision about whether you need surgery or pt without seeing the films. Let them know that you don't feel like you've had a complete exam until you can go over these with the surgeon. And let them know that you're not taking their crap. They don't get to put you off- and if that means that you sit in the office until the surgeon sees you-- you'll do that.

It's way past time to start filing complaints with the Head of Vanderbilt, and let them know that if they want to try to put you off for another six weeks, you'll be consulting an attorney.

Dr. Prettypants and her beloved collegues are a disgrace to their professions.

ARRRRRRRAGGGGGGGGGGGHHHHHHHHhhhh

[Guest guest]

Well my dear friend Tracie, my neurosurgeon visit went pretty much like

any other visit at Vanderbilt. Of course the pain clinic forgot to send

my MRI films after I specifically called them to send them last Monday.

And the neurosurgeon says I'm not a canidate for surgery.. because (a)

I'm overweight ( I've not had physical therapy © my MRI report which

they did send showed only a slight bulging disc (d) which means the

discogram means shit in the hind sight of everything (sorry for the

profanity).. She did say for me to attempt physical therapy for 6 weeks,

with hydrotherapy 3times a week. For me to see a orthopedic doctor to

make sure I'm not having hip pain instead of nerve pain. hmm what else?

I think that pretty much covers it. I did have an event this morning

when I woke up, I jumped up and out of bed and down I went, if not for a

bedside table which I grasped to, I would have been down in the floor

yet once again. My R leg had gone totally dead, it didn't feel asleep,

I've had that to happen, nor did it feel numb which I had happen when my

blood sugars were out of control.. I had to keep pushing that issue.

So, she finally said she thought that was due to pressure on my sacral

nerve, and when I changed positions the pressure was relieved and after

a few minutes it did go away, what can I say, but possible.. but it all

can be bullshit too.. She had " NO " explaination for the weakness in my

legs, so I interjected " Neurosarcoidosis " she said possible shaking her

head, but that my neurologist would have to tell me that. I've seen this

same Neurologist for 3 years he hasn't told me much, I've been the one

telling him.. After all, during the first few years I had my own

specialist (Ish) which told me what to do, what to look for what to tell

my doctors, etc. My memory is so bad now, I don't remember a lot of

it..Soo my friend, I will do as the neurosurgeron says for 6 weeks,

before I start raising total hell..

Hugs,

>

> In a message dated 10/21/06 7:27:28 PM Pacific Daylight Time,

> topdat@... writes:

>

>

> > I actually thought it was restless leg syndrome, because there are

times I

> > can't keep my legs still, but they hurt.

>

> One of the things I was reading in the Parkinsons Report (my dad has

Park.)

> was that Vitamin B defiency is often a precursor for " restless legs "

(and other

> jerky sensations). since most all of our meds rob us of B's-- both the

> Folic Acid and a multiple Vit b complex would be a good investment.

>

> How do you know when you're getting enough B's? If you start having

that

> wonderful " body flush " -- from the Niacin-- then you're getting enough

B. If

> you're not there yet, take more.

>

> The other " up " side-- vitamin B's help with mood-- so the depression

issues

> can also be handled with this to some extent.

>

> Take care-- and I'm expecting a report after tomorrow's visit with

> neurosurgeon.

>

> Love ya,

> Tracie

>

[Guest guest]

,

I know your note was to Tracie, but I have to tell you how sorry I am that your visit was worthless. I can truly relate and I know just how you want to spew profanity. I feel so bad for you. I can only say that I hope the therapy helps.

Barb J.

Re: Restless legs/Tracie

Well my dear friend Tracie, my neurosurgeon visit went pretty much likeany other visit at Vanderbilt. Of course the pain clinic forgot to sendmy MRI films after I specifically called them to send them last Monday. And the neurosurgeon says I'm not a canidate for surgery.. because (a)I'm overweight ( I've not had physical therapy © my MRI report whichthey did send showed only a slight bulging disc (d) which means thediscogram means shit in the hind sight of everything (sorry for theprofanity).. She did say for me to attempt physical therapy for 6 weeks,with hydrotherapy 3times a week. For me to see a orthopedic doctor tomake sure I'm not having hip pain instead of nerve pain. hmm what else?I think that pretty much covers it. I did have an event this morningwhen I woke up, I jumped up and out of bed and down I went, if not for abedside table which I grasped to, I would have been down in

the flooryet once again. My R leg had gone totally dead, it didn't feel asleep,I've had that to happen, nor did it feel numb which I had happen when myblood sugars were out of control.. I had to keep pushing that issue. So, she finally said she thought that was due to pressure on my sacralnerve, and when I changed positions the pressure was relieved and aftera few minutes it did go away, what can I say, but possible.. but it allcan be bullshit too.. She had "NO" explaination for the weakness in mylegs, so I interjected "Neurosarcoidosis" she said possible shaking herhead, but that my neurologist would have to tell me that. I've seen thissame Neurologist for 3 years he hasn't told me much, I've been the onetelling him.. After all, during the first few years I had my ownspecialist (Ish) which told me what to do, what to look for what to tellmy doctors, etc. My memory is so bad now, I don't remember a

lot ofit..Soo my friend, I will do as the neurosurgeron says for 6 weeks,before I start raising total hell..Hugs,>> >>> > I actually thought it was restless leg syndrome, because there aretimes I> > can't keep my legs still, but they hurt.>> One of the things I was reading in the Parkinsons Report (my dad hasPark.)> was that Vitamin B defiency is often a precursor for "restless legs"(and other> jerky sensations). since most all of our meds rob us of B's-- both the> Folic Acid and a multiple Vit b complex would be a good investment.>> How do you know when you're getting enough B's? If you start havingthat> wonderful "body flush"-- from the Niacin-- then you're getting

enoughB. If> you're not there yet, take more.>> The other "up" side-- vitamin B's help with mood-- so the depressionissues> can also be handled with this to some extent.>> Take care-- and I'm expecting a report after tomorrow's visit with> neurosurgeon.>> Love ya,> Tracie>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 4PM

EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thanks Barb, that's one of the good things about this group, you are welcome to interject anytime you want to! That's why this is a support group.. if you know anything that someone isn't doing that could help or something they are doing that they shouldn't be doing, it never hurts to apply your opinion.

Hugs,

> >> > In a message dated 10/21/06 7:27:28 PM Pacific Daylight Time,> > topdat@ writes:> >> >> > > I actually thought it was restless leg syndrome, because there are> times I> > > can't keep my legs still, but they hurt.> >> > One of the things I was reading in the Parkinsons Report (my dad has> Park.)> > was that Vitamin B defiency is often a precursor for "restless legs"> (and other> > jerky sensations). since most all of our meds rob us of B's-- both the> > Folic Acid and a multiple Vit b complex would be a good investment.> >> > How do you know when you're getting enough B's? If you start having> that> > wonderful "body flush"-- from the Niacin-- then you're getting enough> B. If> > you're not there yet, take more.> >> > The other "up" side-- vitamin B's help with mood-- so the depression> issues> > can also be handled with this to some extent.> >> > Take care-- and I'm expecting a report after tomorrow's visit with> > neurosurgeon.> >> > Love ya,> > Tracie> >> > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST> OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST> SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST> > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

,I loved Tracie's reply to you about this. I agree with her wholeheartedly. You're being treated poorly. Some doctors just don't have a clue about sarcoid. Throw in some extra weight and that's the first thing some focus on even though we have been or are on steroids! The wt thing is a prejudice some people can't get past and so their treatment of their pts is lacking. BLAME the pt. Yes, that's the answer since goofus doesn't know what to do. Sorry but that's what some MD's do! It feels like we're betwix and between...we've overwt b/c of steroids, we are exercise intolerant for reasons other than the wt (like not enough O2 diffusion, pain, etc.), so exercise and wt loss becomes a real difficult issue. I will be thinking of you. You have a right as a pt to expect good medical care. It sounds like you are being messed with.Blessings,Becky wrote: Thanks Barb, that's one of the good things about this group, you are welcome to interject anytime you want to! That's why this is a support group.. if you know anything that someone isn't doing that could help or something they are doing that they shouldn't be doing, it never hurts to apply your opinion. Hugs, > >> > In a message dated 10/21/06 7:27:28 PM Pacific Daylight Time,> > topdat@ writes:> >> >> > > I actually

thought it was restless leg syndrome, because there are> times I> > > can't keep my legs still, but they hurt.> >> > One of the things I was reading in the Parkinsons Report (my dad has> Park.)> > was that Vitamin B defiency is often a precursor for "restless legs"> (and other> > jerky sensations). since most all of our meds rob us of B's-- both the> > Folic Acid and a multiple Vit b complex would be a good investment.> >> > How do you know when you're getting enough B's? If you start having> that> > wonderful "body flush"-- from the Niacin-- then you're getting enough> B. If> > you're not there yet, take more.> >> > The other "up" side-- vitamin B's help with mood-- so the depression> issues> > can also be handled with this to some extent.> >> > Take care-- and I'm expecting a

report after tomorrow's visit with> > neurosurgeon.> >> > Love ya,> > Tracie> >> > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST> OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST> SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST> > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

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Well Tracie and Becky, I totally agree with both of you, but I do know that being overweight does add added pressure to your back, that's a no brainer, I am overweight, I would love to get it off, but haven't been able too, being confined in my home, and in the w/c when I leave my home. I have agreed to 6 weeks of therapy, which I think is reasonable since I've not done it.. Can I do it. ..I really don't think so, but I will give it a try. The water therapy may help, we'll see, can't hurt. And maybe I'll lose a few pounds in the process. Tracie, I don't drive any more, one reason is the teenager has my car, but the other reason I can't get my MRI films, is I ride the public transportation van's that Tenncare pays for, they are happy to take me to the doctor, if I need to go to the grocery store, and trips like that.. But Dr Pretty Pants has sent me to a Pain Clinic clear on the other side of Nashville, which is actually a 2 hour ride for me, which a two way trip is 4 hours, I don't think they would allow this even if I wanted to.. I just don't feel like I can do this right now, especially since its gotten colder, and I don't do well in the cold...Of course, if may not be that cold to you Northern's, but I'm freezing.. lol At the end of the 6 weeks period, and I can't walk due to inflammation of my lower spine, I will be like a bear, when I return on my visit.. I do see the pain clinic before that time and I will not leave that building untill I have those babies in my hands, screw their mailing system. As we all know we get shoved off to the side like we are second rate citizens.. Who's to say the next neurosurgeon won't say the very same thing. Once I get those films, its very possible that I can get a second opinion, and probably will. If not, I may at least go talk to a chiropractor... which was another suggestion ...

Thanks guys, we are alot like family, and I love how you are ready to fight for me.. That's true family style.

Love you both,

> > >> > > In a message dated 10/21/06 7:27:28 PM Pacific Daylight Time,> > > topdat@ writes:> > >> > >> > > > I actually thought it was restless leg syndrome, because there are> > times I> > > > can't keep my legs still, but they hurt.> > >> > > One of the things I was reading in the Parkinsons Report (my dad has> > Park.)> > > was that Vitamin B defiency is often a precursor for "restless legs"> > (and other> > > jerky sensations). since most all of our meds rob us of B's-- both the> > > Folic Acid and a multiple Vit b complex would be a good investment.> > >> > > How do you know when you're getting enough B's? If you start having> > that> > > wonderful "body flush"-- from the Niacin-- then you're getting enough> > B. If> > > you're not there yet, take more.> > >> > > The other "up" side-- vitamin B's help with mood-- so the depression> > issues> > > can also be handled with this to some extent.> > >> > > Take care-- and I'm expecting a report after tomorrow's visit with> > > neurosurgeon.> > >> > > Love ya,> > > Tracie> > >> > > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> > > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST> > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST> > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST> > > > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > > > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > >

[Guest guest]

, I have a friend (a nurse that I used to work with) that has scleroderma. She does water therapy when she can and she said it's helpful. Her feet have lumps on them and make it hard for her to walk. Lately, she has not been able to go to water therapy b/c of pain issues. She has gained about 50 pounds (she was on pred and is now on remicade I think). Since she now lives across the state I only communicate with her via email or phone. Anyway, you're right about wt causing problems but when it's steroid induced it is so difficult to get off if not impossible. Tracie has said something that I keep tucked away in my head: use whatever we can to get some exercise (I particularly loved the spaghetti as a wt)...it made me want to do something even if that meant doing a little at a time. It will at least give me something in the way of exercise. Of course, when I'm having a really bad day, I don't do anything except curl up on the couch and watch "Bagger Vance"

(inspirational) or other movies like that. Sometimes I am just too tired to do anything. But this group has given me hope and support. There's nothing better than that combined with my faith. I very much believe that I was pointed in this direction by my higher power. Anyway, you are right: get your films so matter what. And we are family even if we've never laid eyes upon each other. There's a connection that holds us together and it was meant to be b/c of our disease. So seeing the glass half full (hard for me to do sometimes) is knowing that there is something positive coming out of a very negative situation: meeting great folks who care and are willing to share with others. Thank you for who you are and what you do to help others.Much Love,Becky wrote: Well Tracie and Becky, I totally agree with both of you, but I do know that being overweight does add added pressure to your back, that's a no brainer, I am overweight, I would love to get it off, but haven't been able too, being confined in my home, and in the w/c when I leave my home. I have agreed to 6 weeks of therapy, which I think is reasonable since I've not done it.. Can I do it. ..I really don't think so, but I will give it a try. The water therapy may help, we'll see, can't hurt. And maybe I'll lose a few pounds in the process. Tracie, I don't drive any more, one reason is the teenager has my car, but the other reason I can't get my MRI films, is I ride

the public transportation van's that Tenncare pays for, they are happy to take me to the doctor, if I need to go to the grocery store, and trips like that.. But Dr Pretty Pants has sent me to a Pain Clinic clear on the other side of Nashville, which is actually a 2 hour ride for me, which a two way trip is 4 hours, I don't think they would allow this even if I wanted to.. I just don't feel like I can do this right now, especially since its gotten colder, and I don't do well in the cold...Of course, if may not be that cold to you Northern's, but I'm freezing.. lol At the end of the 6 weeks period, and I can't walk due to inflammation of my lower spine, I will be like a bear, when I return on my visit.. I do see the pain clinic before that time and I will not leave that building untill I have those babies in my hands, screw their mailing system. As we all know we get shoved off to the side like we are second rate citizens.. Who's to say the next neurosurgeon won't

say the very same thing. Once I get those films, its very possible that I can get a second opinion, and probably will. If not, I may at least go talk to a chiropractor... which was another suggestion ... Thanks guys, we are alot like family, and I love how you are ready to fight for me.. That's true family style. Love you both, > > >> > > In a message dated 10/21/06 7:27:28 PM Pacific Daylight Time,> > > topdat@ writes:> > >> > >> > > > I actually thought it was restless leg syndrome, because there are> > times I> > > > can't keep my legs still, but they hurt.> > >> > > One of the things I was reading in the Parkinsons Report (my dad has> > Park.)> > > was that Vitamin B defiency is often a precursor for "restless legs"> > (and other> > > jerky sensations). since most all of our meds rob us of B's-- both the> > > Folic Acid and a multiple Vit b complex would be a good investment.> > >> > > How do you know when you're getting enough B's? If you start having> >

that> > > wonderful "body flush"-- from the Niacin-- then you're getting enough> > B. If> > > you're not there yet, take more.> > >> > > The other "up" side-- vitamin B's help with mood-- so the depression> > issues> > > can also be handled with this to some extent.> > >> > > Take care-- and I'm expecting a report after tomorrow's visit with> > > neurosurgeon.> > >> > > Love ya,> > > Tracie> > >> > > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> > > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST> > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST> > SUNDAY 4PM

EST. 3PM CENTRAL. 1PM PST> > > > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > > > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > >