Aa
Horrendous pain...
Hi guys, I'm new here and looking for... Oh I don't know what I'm looking for.
I was DX with MS 10 years ago. First two years were pretty good.... just a bit of numbness and tingling.
I have gotten increasingly worse. I'm suffering with excruciating pain at the moment, it started about a month ago
The pain starts in the right cheek of my bottom, it slowly creeps right down to my foot. As the pain reaches my foot my left leg goes AWOL. It then screws up to hip height, my knee bends inwards, my ankle twists too and my toes bend outwards. Then my ribcage...( right side) starts burning, just after this my left arm does the same thing as my left leg. I look I'm auditioning for a part in the "Karate Kid".
All the above happens no matter what I'm doing.... sitting... standing, walking... even sleeping.
I have leisions on the brain and brain stem. I take Gabapentin, and other bits and bobs
What I'm puzzled about is... why does my left side behave the way it does because I have burning on the right. Any one else have this, or am I a weird case?
TIA...
I was DX with MS 10 years ago. First two years were pretty good.... just a bit of numbness and tingling.
I have gotten increasingly worse. I'm suffering with excruciating pain at the moment, it started about a month ago
The pain starts in the right cheek of my bottom, it slowly creeps right down to my foot. As the pain reaches my foot my left leg goes AWOL. It then screws up to hip height, my knee bends inwards, my ankle twists too and my toes bend outwards. Then my ribcage...( right side) starts burning, just after this my left arm does the same thing as my left leg. I look I'm auditioning for a part in the "Karate Kid".
All the above happens no matter what I'm doing.... sitting... standing, walking... even sleeping.
I have leisions on the brain and brain stem. I take Gabapentin, and other bits and bobs
What I'm puzzled about is... why does my left side behave the way it does because I have burning on the right. Any one else have this, or am I a weird case?
TIA...
Tilly,
I hope you will take DJ up on her offer to discuss this further - her experiences may help give you some insight.
As for not taking any DMD, that is such a personal decision for everyone. I do know taking my daily injection of copaxone is the only tool I have right now that may help to slow the advancement of my MS. You may want to revisit this discussion with your doctor.
be well,
L
I hope you will take DJ up on her offer to discuss this further - her experiences may help give you some insight.
As for not taking any DMD, that is such a personal decision for everyone. I do know taking my daily injection of copaxone is the only tool I have right now that may help to slow the advancement of my MS. You may want to revisit this discussion with your doctor.
be well,
L
Happy Thanksgiving, I am so sorry I didn't come on line sooner.
Tiff, I totally get what you are saying. I have been living with PP MS for almost 24 years. I have lesions in about the same places, The one on the brain stem was the largest.I also have several on my spine. When I was DX there were 3 Major and too many minor ones to count.
The Pain around the ribs I am sure others have already told you is often referred to as a MS Hug. These can be severe enough to cause the ribs to crack. But that is very rare.
The other type of spasticy you are describing sound like dystonic spasticy spasms. The under lining cause being MS.
You seem to be having two types of pain, Bone pain and Nerve pain. They require different drugs. I have an internal Morphine pump to address the bone pain caused by the MS spasms in the muscles surrounding the long bones., For Now I am taking Cymbalta for the nerve pain, which is what you are describing when you talk about the buttocks . Nerve pain is much different from the pain caused by spasms. The nerves between the bladder and rectum have been effected by the MS. It is very difficult to treat. You need to see an Urologist, and also a Pain Management Doctor. The Pain Management Dr hopefully will be familiar with MS. Otherwise he might prescribe the wrong Medication. Valium does not work very well to quiet the nerves from misfiring. But for some reason the Doctors like to use this for spasms?? The same with the Urologist. Have you been having any problem with the bowels, or your throat??
If you want to you can PM me and I'll be happy to talk to you about what ever you might possibly be dealing with. What you are talking about just sounds so familiar to me. But it is important to always remember that No Two MS Cases are the same.. So take information I pass on to you with a grain of salt.. Remember I am giving you information about me NOT Telling you What is happening to your body. I am not a Doctor or Nurse, I only know what MS is doing to me and my Body.
I have always had the twisting and Freezing spasms, it took almost Ten Years for a Doctor to finally tell me what was happening to me, this was because he saw it. Most of my other Doctors wouldn't listen to me when I tried to explain what was happening to me. They would say things like MS doesn't act this way.. HELLO !! Oh yes it CAN.
I am so sorry you are dealing with these things, but you sound like you are a strong person and you will figure out how you will deal with it. I will be more than happy to be there for you in any way I Can..
Tiff, I hope I haven't added to your confusion, I didn't read all the other post, as I am having very bad vision problems right now. I would suggest that you hear every one out, Use what you can and file the rest If it sounds familiar than check it out further in a PM.
Hope you have a very Blessed Thanksgiving. This is a good time to concentrate on what you have been given and not what you have lost or don't have. I find when I start adding up all the many Blessings, It doesn't seem quite so Bleak.. Hang in there and Welcome to The Group. We are all here for you..
Sending you hugs on the winds {{{{~!~}}}} DJ
Tiff, I totally get what you are saying. I have been living with PP MS for almost 24 years. I have lesions in about the same places, The one on the brain stem was the largest.I also have several on my spine. When I was DX there were 3 Major and too many minor ones to count.
The Pain around the ribs I am sure others have already told you is often referred to as a MS Hug. These can be severe enough to cause the ribs to crack. But that is very rare.
The other type of spasticy you are describing sound like dystonic spasticy spasms. The under lining cause being MS.
You seem to be having two types of pain, Bone pain and Nerve pain. They require different drugs. I have an internal Morphine pump to address the bone pain caused by the MS spasms in the muscles surrounding the long bones., For Now I am taking Cymbalta for the nerve pain, which is what you are describing when you talk about the buttocks . Nerve pain is much different from the pain caused by spasms. The nerves between the bladder and rectum have been effected by the MS. It is very difficult to treat. You need to see an Urologist, and also a Pain Management Doctor. The Pain Management Dr hopefully will be familiar with MS. Otherwise he might prescribe the wrong Medication. Valium does not work very well to quiet the nerves from misfiring. But for some reason the Doctors like to use this for spasms?? The same with the Urologist. Have you been having any problem with the bowels, or your throat??
If you want to you can PM me and I'll be happy to talk to you about what ever you might possibly be dealing with. What you are talking about just sounds so familiar to me. But it is important to always remember that No Two MS Cases are the same.. So take information I pass on to you with a grain of salt.. Remember I am giving you information about me NOT Telling you What is happening to your body. I am not a Doctor or Nurse, I only know what MS is doing to me and my Body.
I have always had the twisting and Freezing spasms, it took almost Ten Years for a Doctor to finally tell me what was happening to me, this was because he saw it. Most of my other Doctors wouldn't listen to me when I tried to explain what was happening to me. They would say things like MS doesn't act this way.. HELLO !! Oh yes it CAN.
I am so sorry you are dealing with these things, but you sound like you are a strong person and you will figure out how you will deal with it. I will be more than happy to be there for you in any way I Can..
Tiff, I hope I haven't added to your confusion, I didn't read all the other post, as I am having very bad vision problems right now. I would suggest that you hear every one out, Use what you can and file the rest If it sounds familiar than check it out further in a PM.
Hope you have a very Blessed Thanksgiving. This is a good time to concentrate on what you have been given and not what you have lost or don't have. I find when I start adding up all the many Blessings, It doesn't seem quite so Bleak.. Hang in there and Welcome to The Group. We are all here for you..
Sending you hugs on the winds {{{{~!~}}}} DJ
Hi Lulu, 3 years ago I was offered DMD's, I told my neuro I wanted to go without. This was after reading tons of lit on them, also my whole family put me off.
Tiff
Tiff
Tiff,
yes, a trip to the neuro is definitely needed. Be sure the doctor understands the frequency and severity of these spasms.
You didn't say - but I'm wondering if you had been on any DMD for the time leading up to this?
Lu
yes, a trip to the neuro is definitely needed. Be sure the doctor understands the frequency and severity of these spasms.
You didn't say - but I'm wondering if you had been on any DMD for the time leading up to this?
Lu
Pain can be so awful. I am sorry that you are going through this, and wanted you to know you have my thoughts and prayers.
Can you get a pain med from your doc? You need something to get relief.
Michelle
Can you get a pain med from your doc? You need something to get relief.
Michelle
Kathy and Lulu, thank you for taking the time to reply to my post. It helps a little just knowing I'm not a weird case .
I'm quite tough when it comes to pain, but this! my god....It feels like an iron bar has been put in a furnace until it glows red hot. I'm used to a hot feeling on my skin, but this runs right down inside my leg.... right next to the bone.
This can wake me up in the middle of the night, once the pain reaches my right foot my left left goes all spastic, after the pain subsides my left side goes back to normal, although I'm left with weakness for up to a couple of hours. The more severe the pain in right side.... the more the left side spasms.
On my worst day I got 18 episodes, yesterday I only had 3, the third one being the worst I've had. It made me go dizzy as well as the usual hot and sweaty.
Oh and the Gabapentin doesn't touch the pain. Guess a visit to my neuro is needed..
Thank you again for responding, and yes I'll be sticking around. The amount of info, help, and advice here is fantastic!!
Tiff
I'm quite tough when it comes to pain, but this! my god....It feels like an iron bar has been put in a furnace until it glows red hot. I'm used to a hot feeling on my skin, but this runs right down inside my leg.... right next to the bone.
This can wake me up in the middle of the night, once the pain reaches my right foot my left left goes all spastic, after the pain subsides my left side goes back to normal, although I'm left with weakness for up to a couple of hours. The more severe the pain in right side.... the more the left side spasms.
On my worst day I got 18 episodes, yesterday I only had 3, the third one being the worst I've had. It made me go dizzy as well as the usual hot and sweaty.
Oh and the Gabapentin doesn't touch the pain. Guess a visit to my neuro is needed..
Thank you again for responding, and yes I'll be sticking around. The amount of info, help, and advice here is fantastic!!
Tiff
Hi Tilly,
Let me add my welcomes to the above. I'm glad you found our community and I hope you'll find it worth your while to stick around.
Your descriptions remind me a lot of what DJ (Shadows sister) goes through with her spasms. She has an intrathecal pump that when it works right delivers morphine directly into her spinal column to help with the pain.
I hope she sees your post and can contribute some thoughts
As for being a weird case, just remember that there is no typical MS patient - we all are totally unique in our presentation of the disease.
Welcome to our forum - I hope you will find it helpful to stick around and share more of your experiences.
be well,
Lulu
Let me add my welcomes to the above. I'm glad you found our community and I hope you'll find it worth your while to stick around.
Your descriptions remind me a lot of what DJ (Shadows sister) goes through with her spasms. She has an intrathecal pump that when it works right delivers morphine directly into her spinal column to help with the pain.
I hope she sees your post and can contribute some thoughts
As for being a weird case, just remember that there is no typical MS patient - we all are totally unique in our presentation of the disease.
Welcome to our forum - I hope you will find it helpful to stick around and share more of your experiences.
be well,
Lulu
Hello, and welcome from me, too. I'm so sorry about your pain; I know what that burning pain feels like. Mine is all right-sided, but the last time it started up, it started in the right cheek of my bottom, spread all the way around my thigh, down my leg, and at some point spread up from the top of my thigh to the under-side of my ribcage, also all the way around. My right forearm took a few days to join the act.
I take Lyrica (similar to gabapentin), but it wouldn't touch this pain. I have Tegretol for my trigeminal neuralgia, so I tried some of that, and it helped quite a bit. Have you talked to your neurologist about the pain? Could the AWOL lower left leg be spasticity?
Maybe the pain on your right causes you to walk differently, and you end up with muscles tightening up; just guessing here.
Maybe a few more "bits and bobs" could help with the horrid pain.
I hope you find relief, and answers as to why your body's acting up.
Take care,
Kathy
I take Lyrica (similar to gabapentin), but it wouldn't touch this pain. I have Tegretol for my trigeminal neuralgia, so I tried some of that, and it helped quite a bit. Have you talked to your neurologist about the pain? Could the AWOL lower left leg be spasticity?
Maybe the pain on your right causes you to walk differently, and you end up with muscles tightening up; just guessing here.
Maybe a few more "bits and bobs" could help with the horrid pain.
I hope you find relief, and answers as to why your body's acting up.
Take care,
Kathy
Welcome to the forum! Sorry you are having such excruciating pain! I don't have any answers to your question but I hope someone else with more experience can jump in here to help.
In the meantime, you might want to check out our Health Pages at the upper right hand corner of the page, next to the yellow icon. This are full of helpful information and you might find some answers in there.
Hope you feel better soon,
Ren
In the meantime, you might want to check out our Health Pages at the upper right hand corner of the page, next to the yellow icon. This are full of helpful information and you might find some answers in there.
Hope you feel better soon,
Ren
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