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Severe pain in legs and CD's of MRI's??
A quick question...I am having pain in my legs like you would not believe!!! It is excrutiating at night and I am having trouble sleeping. It is not a stabbing pain it is more like an ache that doesn't really throb...do you with MS get pain like this? It is really bad when I am lying down and I haven't found anything that helps it!
Just wondering how many of you have actual copies of your MRI's of your brain, pelvis, spine etc.? I am going to go down to the hospital tomorrow and get a copy of my brain MRI....they are charging $30.00 for it but I am getting closer and closer to the feeling that I am going to have to find a new neuro! I don't know that it will make things move any faster but I am getting to the point where I want a copy of EVERYTHING medical if it applies to me! Any thoughts or ideas on what you can get from these doctors?
Rena
Just wondering how many of you have actual copies of your MRI's of your brain, pelvis, spine etc.? I am going to go down to the hospital tomorrow and get a copy of my brain MRI....they are charging $30.00 for it but I am getting closer and closer to the feeling that I am going to have to find a new neuro! I don't know that it will make things move any faster but I am getting to the point where I want a copy of EVERYTHING medical if it applies to me! Any thoughts or ideas on what you can get from these doctors?
Rena
This is an old post. If you would like to start a new post to ask questions you are welcome to.
Alex
Alex
Sorry Rena, about the pain. Pain is a terrible thing. My pain got so bad when I was on the gabapentin, it seemed whenever I upped the dose, the pain increased. One of the reasons my gp took me off it. Somewhere I read that it can lose it's efficacy, but, I don't remember where. Surprise!!! (my bf is surprised whenever I CAN remember stuff, yet he still expects me to. LOL)
I have recently begun to get excruciating pain in my hips and around my knees, specially my right one. But it's not constant. It comes in waves. Kind of like the pain in my jaw. (though that is pretty much constant, just varies.) Like a big nasty spasm.
I get pains in my upper arm, between the tricep and the shoulder muscles, like they don't like one another. Same as in my ribs. Moderate exercise helps, I think.
Keeps things moving, anyways, lol.
I too was a contributing member of society, well, my household, at least. lol Then my brain didn't like me, I had to go off work, I thought for a cpl weeks, to sort it out. They told me two weeks later, when I went to ask to come back to work, that they couldn't take me back without a doctor's note telling them what had happened, and that it wouldn't happen again. I got progressively worse over a few months. I went from jogging to work every day, with my supplies and snacks and water on my back every morning, doing a busy physical job every day, to staggering like a drunk, w a cane, trying to walk a block.
One day, a lady on a wheeled chair, disabled, motored her chair across the road, to make sure I was okay, as I leaned against a tree to recoup, after having walked two blocks. I was sooo embarassed, but, I laughed like hell later. LOL
It has now been almost four years. I have no diagnosis yet. Other than 'Somatization Disorder' Pfffffft. I have had one major episode, I mostly recovered from it, then last summer sometime, things got a little worse again, and, though I haven't gotten bad enough to use my cane again (I used it for almost a year), I have moments where I cannot walk. Scariest is when my brain is stupid. It was yesterday. Thankfully the only one who witnessed my silliness was the bf. LOL And HE expects it. lol
I know I'm not able to go back to my job, I haven't the strength/stamina, but, I keep myself going with the ladies from the gym. I do get a small disability from work, helps me to pay the bills. I would love to be doing something more productive than I now am, but, I'm doing all I can. So, I don't feel guilty. Not about that, anyways, lol.
Worst thing is people keep saying things like, 'you look better, when do you go back to work?' I just say, 'I don't know'.
And you're STILL a contributing member of society. Just differently. I use in here as an example. So, there, too!!! LOL
Erica
I have recently begun to get excruciating pain in my hips and around my knees, specially my right one. But it's not constant. It comes in waves. Kind of like the pain in my jaw. (though that is pretty much constant, just varies.) Like a big nasty spasm.
I get pains in my upper arm, between the tricep and the shoulder muscles, like they don't like one another. Same as in my ribs. Moderate exercise helps, I think.
Keeps things moving, anyways, lol.
I too was a contributing member of society, well, my household, at least. lol Then my brain didn't like me, I had to go off work, I thought for a cpl weeks, to sort it out. They told me two weeks later, when I went to ask to come back to work, that they couldn't take me back without a doctor's note telling them what had happened, and that it wouldn't happen again. I got progressively worse over a few months. I went from jogging to work every day, with my supplies and snacks and water on my back every morning, doing a busy physical job every day, to staggering like a drunk, w a cane, trying to walk a block.
One day, a lady on a wheeled chair, disabled, motored her chair across the road, to make sure I was okay, as I leaned against a tree to recoup, after having walked two blocks. I was sooo embarassed, but, I laughed like hell later. LOL
It has now been almost four years. I have no diagnosis yet. Other than 'Somatization Disorder' Pfffffft. I have had one major episode, I mostly recovered from it, then last summer sometime, things got a little worse again, and, though I haven't gotten bad enough to use my cane again (I used it for almost a year), I have moments where I cannot walk. Scariest is when my brain is stupid. It was yesterday. Thankfully the only one who witnessed my silliness was the bf. LOL And HE expects it. lol
I know I'm not able to go back to my job, I haven't the strength/stamina, but, I keep myself going with the ladies from the gym. I do get a small disability from work, helps me to pay the bills. I would love to be doing something more productive than I now am, but, I'm doing all I can. So, I don't feel guilty. Not about that, anyways, lol.
Worst thing is people keep saying things like, 'you look better, when do you go back to work?' I just say, 'I don't know'.
And you're STILL a contributing member of society. Just differently. I use in here as an example. So, there, too!!! LOL
Erica
Oh shoot, I forgot to say that I've never paid anything for copies of my Mri's.
J Fizz
J Fizz
My Dearest Rena
Darn legs can be a pain in the $#@ can't they? I have same problem, its far worse in the evening and when lying down. You did give me a little laugh with the blubbering idiot and falling over, sounds just like I would describe myself!!
I'm in a negative zone too right now. I'm hangin' with ya girlfriend. Sounds like a fun time with your Mom. :))
Sorry I dont 'have any advice on the legs, nothing seems to help mine. :(
hang in there dear,
Jazzy fizzle
Darn legs can be a pain in the $#@ can't they? I have same problem, its far worse in the evening and when lying down. You did give me a little laugh with the blubbering idiot and falling over, sounds just like I would describe myself!!
I'm in a negative zone too right now. I'm hangin' with ya girlfriend. Sounds like a fun time with your Mom. :))
Sorry I dont 'have any advice on the legs, nothing seems to help mine. :(
hang in there dear,
Jazzy fizzle
Hi All...back from taking Mom to the Casino and I am proud to say I am 50 cents ahead!! We had a pretty good time, Mom lost all her money though, had to buy her milk and groceries till we can get her to the bank...not a problem but it was pretty funny! We are all limited by ourselves to $40.00 each and once that's gone we go home!
I am SOOOOO tired and my legs are killing me though and I did have a bit of a breakdown on the way home from Mom's...I haven't driven my Mustang since last year and it was a beautiful spring like day and song came on the radio that I used to blast in my car and sing to the top of my lungs...well I can't do that anymore and we are seriously thinking of selling my car. My dr. very seriously doesn't think that I am going to improve any time soon. She is concerned with dealing with the pain right now and said that if dealing with pain means that I have trouble with balance or speech, that may be something I have to live with...I am SO CONFUSED!!!
Last year I was a contributing member of society...now I am stuck in my house, walking with a cane, talking like a blubbering idiot and falling over regularly! What the He** is that I ask you??? I am trying to keep a positive attitude but I am feeling VERY negative right now...I guess whatever happens, happens right?
Rena
I am SOOOOO tired and my legs are killing me though and I did have a bit of a breakdown on the way home from Mom's...I haven't driven my Mustang since last year and it was a beautiful spring like day and song came on the radio that I used to blast in my car and sing to the top of my lungs...well I can't do that anymore and we are seriously thinking of selling my car. My dr. very seriously doesn't think that I am going to improve any time soon. She is concerned with dealing with the pain right now and said that if dealing with pain means that I have trouble with balance or speech, that may be something I have to live with...I am SO CONFUSED!!!
Last year I was a contributing member of society...now I am stuck in my house, walking with a cane, talking like a blubbering idiot and falling over regularly! What the He** is that I ask you??? I am trying to keep a positive attitude but I am feeling VERY negative right now...I guess whatever happens, happens right?
Rena
I really appreciate all of your responses and MCBCON...you had lots to say worthwhile honey!
I had my appointment with my dr. and she is going to change my meds a little...I explained that the pain was unbearable and I can't even sleep due to it. I have to have a tooth pulled next Tuesday...I can't wait anymore to have it done. The dr. said to wait to change my meds after that happens. Guess I will be in this horrible pain until then eh?
After the tooth extraction she said to drop the Neurontin completely and increase the Lyrica and keep taking the Tegretol to ensure no seizures. I asked her about that sister drug to Tegretol and she had never heard of it but she said she will look into it. I also asked her about the possibility of Fibroneuralgia and she says she will send me to a Rheumatologist at my request of course because like my Mom says...who is the doctor anyway?
I am really tired and in a lot of pain tonight so I will get back at ya tomorrow some time. My Mom is staying over tonight and we promised to take her to the casino tomorrow for a while...I HATE the casino but at 80 years old...if she wants to go...we take her!
Lots of Hugs,
Rena
I had my appointment with my dr. and she is going to change my meds a little...I explained that the pain was unbearable and I can't even sleep due to it. I have to have a tooth pulled next Tuesday...I can't wait anymore to have it done. The dr. said to wait to change my meds after that happens. Guess I will be in this horrible pain until then eh?
After the tooth extraction she said to drop the Neurontin completely and increase the Lyrica and keep taking the Tegretol to ensure no seizures. I asked her about that sister drug to Tegretol and she had never heard of it but she said she will look into it. I also asked her about the possibility of Fibroneuralgia and she says she will send me to a Rheumatologist at my request of course because like my Mom says...who is the doctor anyway?
I am really tired and in a lot of pain tonight so I will get back at ya tomorrow some time. My Mom is staying over tonight and we promised to take her to the casino tomorrow for a while...I HATE the casino but at 80 years old...if she wants to go...we take her!
Lots of Hugs,
Rena
I CAN RELATE TO THE BONE STABBING PAIN,I GET IT WHILE AT REST.SOME NIGHTS ARE UNBEARABLE.I ACN'T SAY IF ITS THE MS OR ARACHNOIDITIS,BUT I CAN SAY ITS RELENTLESS AND CAN SEND YA THROUGH THE ROOF.
I'M ON NEURONTIN 300MGS TWICE A DAY,BACLOFEN 20 MGS 3 TIMES A DAY ,OXYCODENE 3 TIMES A DAY,VALIUM 2 TIMES A DAY AND ATIVAN AT NIGHT, WITH THIS MEDICINE ARSONAL ITS STILL NOT ENOUGH AT TIMES.
I HAVE FOUND SOME NIGHTS TAKING THE PRESURE OFF THE SPINE,AS IN A PILLOW UNDER THE KNEES,A RECLINER CAN RELEIVE SOME OF IT AND SOME TIMES A MOIST TOWEL PUT IN THE MICROWAVE AND SLIGHTLY HEATED CAN PROVIDE SOME RELEIF.
I HOPE YOU GET SOME ANSWERS AT YOUR GP'S OFFICE.
RENA,I HAVE COPIES OF EVERY TEST I HAVE HAD DONE,I HAVE COPIES OF PAST DR. NOTES FROM DRS I NO LONGER SEE ANYMORE.
ITS ALWAYS BEST TO ALWAYS HAVE COPIES OF ALL TEST AND BLOOD WORK,MY NEURO NOW JUST HANDS ME COPIES OF THE TEST.
T-LYNN
I'M ON NEURONTIN 300MGS TWICE A DAY,BACLOFEN 20 MGS 3 TIMES A DAY ,OXYCODENE 3 TIMES A DAY,VALIUM 2 TIMES A DAY AND ATIVAN AT NIGHT, WITH THIS MEDICINE ARSONAL ITS STILL NOT ENOUGH AT TIMES.
I HAVE FOUND SOME NIGHTS TAKING THE PRESURE OFF THE SPINE,AS IN A PILLOW UNDER THE KNEES,A RECLINER CAN RELEIVE SOME OF IT AND SOME TIMES A MOIST TOWEL PUT IN THE MICROWAVE AND SLIGHTLY HEATED CAN PROVIDE SOME RELEIF.
I HOPE YOU GET SOME ANSWERS AT YOUR GP'S OFFICE.
RENA,I HAVE COPIES OF EVERY TEST I HAVE HAD DONE,I HAVE COPIES OF PAST DR. NOTES FROM DRS I NO LONGER SEE ANYMORE.
ITS ALWAYS BEST TO ALWAYS HAVE COPIES OF ALL TEST AND BLOOD WORK,MY NEURO NOW JUST HANDS ME COPIES OF THE TEST.
T-LYNN
My leg pain is also unbearable at times, especially at night. It's a burning, achy, jumpy pain. I take 150 mg of Lyrica, 10 mg baclofen and 5-10 mg vicodan about 30 min-1hr before bedtime. I also take a moist heating pad (corn or rice bag works well) to bed with me and keep it near or on my legs. The warmth replaces the ache with a more pleasant sensation.
Hope this helps and good luck with your docs. I'm still in limboland, seeing a university specialist soon.
BRENDA55
Hope this helps and good luck with your docs. I'm still in limboland, seeing a university specialist soon.
BRENDA55
Rena, I'm sorry your having that kind of pain in your legs. I have had trigger point injections and you might want to bring that up and see if your gp will give you one. Another thing is get some lidoderm patches, the only problem if it is deep down it wont get there, ask for samples. Xanax or valium might help. I take 2400mg of gabapentin a day. its a lot but it gets the burn under control. good luck with this honey, let me know.
Lots of Love
Spastic Ada
Lots of Love
Spastic Ada
I'm sorry you are in such discomfort; unfortunately I can't offer anything in this regard, but will address your question about copies of MRIs.
The Health Information Act of Alberta says that "An individual has a right of access to any record containing health information about the individual that is in the custody or under the control of a custodian." Access includes examining the record and/or obtaining a copy.
In terms of fees, the Act "....does not permit a custodian to charge a fee in respect of a request for access to an applicant’s own health information, except for the cost of producing the copy."
I'm guessing that there is probably a legislated fee schedule that outlines what can be charged for copies of different kinds of health records, but I've never seen one. You might want to inquire about this with the hospital.
I live in Northern Alberta and have gotten copies of my MRIs on CD for no charge. I just make the request before the procedure, and wait a few minutes afterwards for them to make me a copy. I book my MRI for 8am so they are not too busy to do this. I get a copy of the report later, from my family physician or specialist, whomever I see first.
My family physician's office has charged me $25 for a copy of my file; I paid it once, and now whenever there is a new report on file, I am given a copy at no charge.
I agree with your sentiment - get copies of EVERYTHING. It's your personal health information, you are entitled to access, and it is extremely useful to have on hand. If you must pay a fee, so be it, unless you are unable to afford to do so (in which case, the Act states "a custodian may excuse an applicant from paying all or part of a fee if, in the opinion of the custodian, the applicant cannot afford the fee...").
One of the first things I did when the diagnostic process started was to get a binder and start filing everything - copies of MRI reports, films, bloodwork, specialists' reports, prescriptions, health insurance documents, a running chronology, contact info, etc. etc. It was the only way I could keep track of everything that was and is going on. I bring it along to any appointment where I think it might be useful.
Good luck at your appt. today.
db1
The Health Information Act of Alberta says that "An individual has a right of access to any record containing health information about the individual that is in the custody or under the control of a custodian." Access includes examining the record and/or obtaining a copy.
In terms of fees, the Act "....does not permit a custodian to charge a fee in respect of a request for access to an applicant’s own health information, except for the cost of producing the copy."
I'm guessing that there is probably a legislated fee schedule that outlines what can be charged for copies of different kinds of health records, but I've never seen one. You might want to inquire about this with the hospital.
I live in Northern Alberta and have gotten copies of my MRIs on CD for no charge. I just make the request before the procedure, and wait a few minutes afterwards for them to make me a copy. I book my MRI for 8am so they are not too busy to do this. I get a copy of the report later, from my family physician or specialist, whomever I see first.
My family physician's office has charged me $25 for a copy of my file; I paid it once, and now whenever there is a new report on file, I am given a copy at no charge.
I agree with your sentiment - get copies of EVERYTHING. It's your personal health information, you are entitled to access, and it is extremely useful to have on hand. If you must pay a fee, so be it, unless you are unable to afford to do so (in which case, the Act states "a custodian may excuse an applicant from paying all or part of a fee if, in the opinion of the custodian, the applicant cannot afford the fee...").
One of the first things I did when the diagnostic process started was to get a binder and start filing everything - copies of MRI reports, films, bloodwork, specialists' reports, prescriptions, health insurance documents, a running chronology, contact info, etc. etc. It was the only way I could keep track of everything that was and is going on. I bring it along to any appointment where I think it might be useful.
Good luck at your appt. today.
db1
That is a lot of Gabapenten. Gabapenten made my pain bearable until the spasm started getting really bad. After starting on mirapex it became bearable again.
I see by the durg you listed, Tegreto, that Mriapex might be superfluous; I do not know.
Pretty much everything you described might also be caused by MS. The pain you described as being constant and not throbbing is the pain for me that Gabapenten solved.
Yes, get your MRI on CD. I have mine. My nuerologist made use of it when I brought it to him. He was able you use it see changes.
I know that the pain I was feeling was more than I could continue to bear. Please, know that I understand. Wish that actully made difference.
I see by the durg you listed, Tegreto, that Mriapex might be superfluous; I do not know.
Pretty much everything you described might also be caused by MS. The pain you described as being constant and not throbbing is the pain for me that Gabapenten solved.
Yes, get your MRI on CD. I have mine. My nuerologist made use of it when I brought it to him. He was able you use it see changes.
I know that the pain I was feeling was more than I could continue to bear. Please, know that I understand. Wish that actully made difference.
I am bumping this because I have an appt. with my g.p. in a couple hours and maybe I need some ammunition?
I just want to know what the leg pain is like as best anyone can describe it by anyone that has been diagnosed with MS and is not getting the shaft like me by the doc saying my MS is still in remission and has been since 93.
Thanks,
Rena
I just want to know what the leg pain is like as best anyone can describe it by anyone that has been diagnosed with MS and is not getting the shaft like me by the doc saying my MS is still in remission and has been since 93.
Thanks,
Rena
Hi buddy...long time no talk to...the thing is, I am on 1200mg Gabapentin/day and 900mg/Tegretol/day and 75mg/Lyrica/day and IT IS STILL EXCRUTIATING!!! But what I was asking was is that the sort of pain you have with MS?
I have been diagnosed with MS but the "Power's that Be" don't think that this is MS but they have no other answers! I am soooooooo frustrated and in so much pain today that it's killing me I am sure!!! I have an appointment with my g.p. this after noon and I am thinking...WHY? WHAT'S THE BLOODY POINT???
ARRRRRGH!!!!
Rena
I have been diagnosed with MS but the "Power's that Be" don't think that this is MS but they have no other answers! I am soooooooo frustrated and in so much pain today that it's killing me I am sure!!! I have an appointment with my g.p. this after noon and I am thinking...WHY? WHAT'S THE BLOODY POINT???
ARRRRRGH!!!!
Rena
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