Aa
I'm new : ] (and have a question...)
Hi everyone, I am new to this forum. I have had RRMS since May of this year. What a complete life changing experience so far! My first episode went away after a couple of months. Now I have been experiencing severe-excruiciating-debilitating-progressively worse-chronic left hip/leg pain for almost 3 months. I've seen at least 9 doctors about this. I've had an MRI of my lumbar spine with normal results. I'm having a MRI of my pelvic/buttox region next week. I'm now having to walk with a cane at times due to weakness and pain. I'm on a bunch of pain medication, but I still haven't gotten any answers as to what exactly is causing this. I've tried steroids, physical therapy, etc. with no good results. Currently, I am trying acupuncture. Please help if anyone has experienced this pain. The pain radiates from the left side of my tailbone all the way to my feet. Thank you, and I look forward to being a part of this community : )
Kelly- Thanks you : )
Shell- Thanks for the link. That is what I thought was wrong at the beginning of all of this, but after trying Flexeril, Baclofen, and Soma for the tightness... I quickly learned that is not the case. I believe tightening is a symptom of AVN as well.
Lulu- I'm confused about that last part as well! Haha. I totally did not get it. However, I will say, that I have always been under the impression that our immune systems are low... hence, why it is easier for us to get sick than the average person... is this due to our immune systems being overactive perhaps?
This is the rest of our conversation per last night/this morning:
"by patchoulired, 15 hours ago
To: Garth L Nicolson, PhD
Thank you for the information!!! This particular MRI found the avascular necrosis in my left hip bone...
I'm not too happy about this. The first orthopedic doctor I saw about it assumed it was hip bursitis (without x-rays first), and gave me a big fat cortisone injection in my hip. Then, 2 weeks later, he put me on steroids. I read that this disease (AVN) can be aggravated by steroids. Needless to say, I will be going to a different orthopedic doctor!
So, do you think it is possible that the MS actually does play a role in the AVN of my hip? Very interesting.
Thank you again.
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by Garth L Nicolson, PhD, 8 minutes ago
To: patchoulired
The example I gave was for brain and what could happen if AVN occurred in the brain. You didn't specify what tissue or organ was examined, so I just assumed it was brain as an example.
If you don't have any systemic signs and symptoms, then this could be a localized problem caused by injury or another factor, such as a blood clot forming the lower extremities."
Shell- Thanks for the link. That is what I thought was wrong at the beginning of all of this, but after trying Flexeril, Baclofen, and Soma for the tightness... I quickly learned that is not the case. I believe tightening is a symptom of AVN as well.
Lulu- I'm confused about that last part as well! Haha. I totally did not get it. However, I will say, that I have always been under the impression that our immune systems are low... hence, why it is easier for us to get sick than the average person... is this due to our immune systems being overactive perhaps?
This is the rest of our conversation per last night/this morning:
"by patchoulired, 15 hours ago
To: Garth L Nicolson, PhD
Thank you for the information!!! This particular MRI found the avascular necrosis in my left hip bone...
I'm not too happy about this. The first orthopedic doctor I saw about it assumed it was hip bursitis (without x-rays first), and gave me a big fat cortisone injection in my hip. Then, 2 weeks later, he put me on steroids. I read that this disease (AVN) can be aggravated by steroids. Needless to say, I will be going to a different orthopedic doctor!
So, do you think it is possible that the MS actually does play a role in the AVN of my hip? Very interesting.
Thank you again.
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YesNo
by Garth L Nicolson, PhD, 8 minutes ago
To: patchoulired
The example I gave was for brain and what could happen if AVN occurred in the brain. You didn't specify what tissue or organ was examined, so I just assumed it was brain as an example.
If you don't have any systemic signs and symptoms, then this could be a localized problem caused by injury or another factor, such as a blood clot forming the lower extremities."
Though you mention you don't have spasticity, you mention the tightening and other things. Sending you this link so you can see if anything in it rings true for what your experiencing:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Muscle-Tone-And-Spasticity/show/159?cid=36
ttys,
shell
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Muscle-Tone-And-Spasticity/show/159?cid=36
ttys,
shell
This is from the link that Jenny put up - the answer is from the immuno expert Dr. Garth-
"Avascular Necrosis is cell death cause by an interruption of the blood supply to a tissue. I am not sure which tissue was examined in the MRI, but blockage of or damage to blood vessels are the usual causes of loss of blood supply to a tissue.
For example, a minor stroke can cause blood vessel blockage when a blood clot lodges in the brain microvascular. In MS, blood vessel blockage occurs in the brain, and sometimes mechanically breaking the blockage can cause decreases in MS symptoms.
I believe that chronic intracellular infections play a role in MS, because the types of infections found in a majority of MS patients cause vasculitis or inflammation of blood vessels. The inflammation is caused by release of inflammatory cytokines by endothelial cells. In the brain this can result in avascular necrosis when the blood supply is not sufficient. This hypothesis is not, however, generally accepted by the neurological community. "
His first statement sounds to me a variation of the CCSVI idea. Clear the blockage, alleviate/lessen symptoms.
I'm still trying to decipher what the second hypothesis is saying ..... Do we MS patients have a variety of infections in our bodies? This goes against the thinking that our immune systems are OVERactive. I'm confused.
Any thoughts, anyone?
Lulu
"Avascular Necrosis is cell death cause by an interruption of the blood supply to a tissue. I am not sure which tissue was examined in the MRI, but blockage of or damage to blood vessels are the usual causes of loss of blood supply to a tissue.
For example, a minor stroke can cause blood vessel blockage when a blood clot lodges in the brain microvascular. In MS, blood vessel blockage occurs in the brain, and sometimes mechanically breaking the blockage can cause decreases in MS symptoms.
I believe that chronic intracellular infections play a role in MS, because the types of infections found in a majority of MS patients cause vasculitis or inflammation of blood vessels. The inflammation is caused by release of inflammatory cytokines by endothelial cells. In the brain this can result in avascular necrosis when the blood supply is not sufficient. This hypothesis is not, however, generally accepted by the neurological community. "
His first statement sounds to me a variation of the CCSVI idea. Clear the blockage, alleviate/lessen symptoms.
I'm still trying to decipher what the second hypothesis is saying ..... Do we MS patients have a variety of infections in our bodies? This goes against the thinking that our immune systems are OVERactive. I'm confused.
Any thoughts, anyone?
Lulu
Lulu,
Thank you so much. I also have a close friend who had an excellent experience with the hip replacement. I'm scheduling an appt. tomorrow with the best orthopedic surgeons in TN ; )
By the way, I posted this in a different community, and the doctor there had something interesting to say about it if you guys/gals are interested.
http://www.medhelp.org/posts/Autoimmune-Disorders/MS-Pain-or-another-type-of-pain/show/1384288?personal_page_id=1856148
I will def stay in touch and keep the updates rolling. Thank you again for everyone's support!
- Jenny
Thank you so much. I also have a close friend who had an excellent experience with the hip replacement. I'm scheduling an appt. tomorrow with the best orthopedic surgeons in TN ; )
By the way, I posted this in a different community, and the doctor there had something interesting to say about it if you guys/gals are interested.
http://www.medhelp.org/posts/Autoimmune-Disorders/MS-Pain-or-another-type-of-pain/show/1384288?personal_page_id=1856148
I will def stay in touch and keep the updates rolling. Thank you again for everyone's support!
- Jenny
A quick google and I now know that avascular necrosis happens when the blood flow to the bones is cut off - the tissue in the bone dies off for lack of blood. This can be very painful.
This means you need to be talking to your doctor about what can be done to perhaps slow or stop this destruction, before you need a hip replacement. BTW - my DH has a metal hip and it was a fairly easy surgery to recover from.
stay in touch,
Lulu
This means you need to be talking to your doctor about what can be done to perhaps slow or stop this destruction, before you need a hip replacement. BTW - my DH has a metal hip and it was a fairly easy surgery to recover from.
stay in touch,
Lulu
I received my MRI (of my pelvis/hips) results today. My MRI report says:
" The most likely differential considerations include early avascular necrosis versus transient osteoporosis of the hip. A follow up plane radiograph of the pelvis is recommended to access for osteopenia of the left femoral head, which is needed to diagnosis transient osteoporosis. Correlation with risk factors for avascular necrosis is also suggested. An underlying lesion at this location is felt to be much less likely, but follow up MRI in 3 to 4 months is suggested to ensure resolution."...
So, pretty much, they think it's avascular necrosis, whatever that is...
" The most likely differential considerations include early avascular necrosis versus transient osteoporosis of the hip. A follow up plane radiograph of the pelvis is recommended to access for osteopenia of the left femoral head, which is needed to diagnosis transient osteoporosis. Correlation with risk factors for avascular necrosis is also suggested. An underlying lesion at this location is felt to be much less likely, but follow up MRI in 3 to 4 months is suggested to ensure resolution."...
So, pretty much, they think it's avascular necrosis, whatever that is...
Hi Jenny,
The t-spine MRI would go from the bottom of your neck to the top of your lumbar area, so I guess you could kind of considered it your entire spine (but not really, since your cervical (neck) spine is also considered part of your spine).
If you have your images for your lumbar MRI you can look at those and see if you see a tarlov cyst. Or I guess you could ask the radiologist whether or not you have one. I think you also have a higher propensity to get one if you have a direct family member who has had one. And if you have symptoms, and they saw one, they shouldn't have dismissed it.
Here is a website about them:
http://www.tarlovcyst.org/index.php?option=com_content&task=view&id=21
Good luck,
Kelly
The t-spine MRI would go from the bottom of your neck to the top of your lumbar area, so I guess you could kind of considered it your entire spine (but not really, since your cervical (neck) spine is also considered part of your spine).
If you have your images for your lumbar MRI you can look at those and see if you see a tarlov cyst. Or I guess you could ask the radiologist whether or not you have one. I think you also have a higher propensity to get one if you have a direct family member who has had one. And if you have symptoms, and they saw one, they shouldn't have dismissed it.
Here is a website about them:
http://www.tarlovcyst.org/index.php?option=com_content&task=view&id=21
Good luck,
Kelly
Mary,
Thank you for your response. The plan to find out what exactly is causing my pain is what I am trying to do. However, because the pain can be so severe, I also have to keep it in check ; )
Thank you for the encouragement regarding swimming. The YMCA's around here actually have some wonderful indoor, heated (not too hot) pools... however, I am waiting on funds to be able to do this : )
Thanks again Mary!
- Jenny
Thank you for your response. The plan to find out what exactly is causing my pain is what I am trying to do. However, because the pain can be so severe, I also have to keep it in check ; )
Thank you for the encouragement regarding swimming. The YMCA's around here actually have some wonderful indoor, heated (not too hot) pools... however, I am waiting on funds to be able to do this : )
Thanks again Mary!
- Jenny
Kelly,
Thanks so much for the information. I have not had a regular spinal MRI, despite my request to have one to my regular neurologist. A t-spine MRI is just an MRI of the whole spine, correct?? My aunt also had 2 cysts in that area, that showed up somehow, had them removed surgically, and hasn't had any problems since. Would you recommend that I call the MRI place I went to and ask the radiologist if she saw one, but left it off her report?? I wonder if when I go to get my MRI of my butt/pelvic area, if I should request them to look for any cysts as well as lesions??
Thanks for the valuable information. Look forward to hearing back from you.
- Jenny
Thanks so much for the information. I have not had a regular spinal MRI, despite my request to have one to my regular neurologist. A t-spine MRI is just an MRI of the whole spine, correct?? My aunt also had 2 cysts in that area, that showed up somehow, had them removed surgically, and hasn't had any problems since. Would you recommend that I call the MRI place I went to and ask the radiologist if she saw one, but left it off her report?? I wonder if when I go to get my MRI of my butt/pelvic area, if I should request them to look for any cysts as well as lesions??
Thanks for the valuable information. Look forward to hearing back from you.
- Jenny
Hi,
You had mentioned that your lumbar MRI was fine, but have you had a thoracic spine MRI? I have a lesion in my t-spine, and I believe symptoms like you report could also be related to a lesion on your t-spine.
I also have a tarlov cyst at the very bottom of my spine in some sort of sacral area of my lumbar area. The symptoms that you have also sound similar to the symptoms for that - especially if you have a symptomatic "communicating" one. And a lot of times a radiologist will leave it off of their report if you have one, because they are fairly common, but a lot of times, not symptomatic.
Hope you find your answers...
-Kelly
You had mentioned that your lumbar MRI was fine, but have you had a thoracic spine MRI? I have a lesion in my t-spine, and I believe symptoms like you report could also be related to a lesion on your t-spine.
I also have a tarlov cyst at the very bottom of my spine in some sort of sacral area of my lumbar area. The symptoms that you have also sound similar to the symptoms for that - especially if you have a symptomatic "communicating" one. And a lot of times a radiologist will leave it off of their report if you have one, because they are fairly common, but a lot of times, not symptomatic.
Hope you find your answers...
-Kelly
Shell,
I do not have very much spasticity in my leg. Sometimes I feel as if the muscles are tight and are moving a small amount, but it is a painful sensation, and my leg doesn't jerk because of the spasms.
The spinal surgeon I saw gave me Neurontin, but that only seems to help in combination with narcotic pain medicine, and even then I am still in a little bit of pain (when the pain is severe). I will be going to PCP to see if he can heighten the doses on both meds to see if that will help.
What I learned it PT I have been doing at home. My Dad even bought me an electric stimulator for my leg.
Thank you for the links. I do think this is some kind of nerve pain, because when I went to the hospital and they gave me high doses of pain medication (without the nerve pain medicine), the pain was not relieved. Plus, the pain is always there, just for some reason it get progressively worse at night/early morning.
I just started taking Copaxone, but the pain has been there long before I started this medication.
I do not have very much spasticity in my leg. Sometimes I feel as if the muscles are tight and are moving a small amount, but it is a painful sensation, and my leg doesn't jerk because of the spasms.
The spinal surgeon I saw gave me Neurontin, but that only seems to help in combination with narcotic pain medicine, and even then I am still in a little bit of pain (when the pain is severe). I will be going to PCP to see if he can heighten the doses on both meds to see if that will help.
What I learned it PT I have been doing at home. My Dad even bought me an electric stimulator for my leg.
Thank you for the links. I do think this is some kind of nerve pain, because when I went to the hospital and they gave me high doses of pain medication (without the nerve pain medicine), the pain was not relieved. Plus, the pain is always there, just for some reason it get progressively worse at night/early morning.
I just started taking Copaxone, but the pain has been there long before I started this medication.
Thanks so much Rose Anne, I will continue to talk with doctors, and even ask my PCP about finding a good doctor for pain management/specialist. I will definitely update you guys/gals on how everything turns out!
Hi and welcome. Sorry I wasn't around to give you a proper greeting.
The hip problem can be related to MS because the hip flexor is often affected. It could also be something entirely unrelated to the MS.
It has to be difficult to live with an undiagnosed and untreated pain like this.
I wish I had something to offer you, but all I can extend is another welcome. Perhaps someone else here can identify this problem for you.
feel better,
Lulu
The hip problem can be related to MS because the hip flexor is often affected. It could also be something entirely unrelated to the MS.
It has to be difficult to live with an undiagnosed and untreated pain like this.
I wish I had something to offer you, but all I can extend is another welcome. Perhaps someone else here can identify this problem for you.
feel better,
Lulu
Hi there,
Thanks for joining us. Sorry for your diagnosis :(
Do you have spasticity in your leg? Has your neurologist completed a thorough physical to identify if this is indeed from your MS? You mention you've been through a lot of docs and that's the concensus.
If that's the case, and you are not dealing with sciatica or something similar, then your neuro should have offered you 1) a reason (or lease explanation) for the pain i.e., is this spasticity, weakness, etc. and 2) a med that may possibly work to help w/in your CNS.
PT was a good referral and if you can stick with it please do. Though it may not totally take the issue away, it's good to keep those legs moving.
The type of pain you are experiencing will dictate the med. From what you mention here is sounds to me that the pain doc you saw, blew you off.
All that said, I think you'll enjoy reading these couple health pages which describes the differences in pain and treatment:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Nerve-Neuropathic-Pain---A-Primer/show/371?cid=36
http://www.medhelp.org/health_pages/Multiple-Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36
Nice to have you Patch! I hope we can help.
-Shell
p.s. which DMD treatment are you on?
Thanks for joining us. Sorry for your diagnosis :(
Do you have spasticity in your leg? Has your neurologist completed a thorough physical to identify if this is indeed from your MS? You mention you've been through a lot of docs and that's the concensus.
If that's the case, and you are not dealing with sciatica or something similar, then your neuro should have offered you 1) a reason (or lease explanation) for the pain i.e., is this spasticity, weakness, etc. and 2) a med that may possibly work to help w/in your CNS.
PT was a good referral and if you can stick with it please do. Though it may not totally take the issue away, it's good to keep those legs moving.
The type of pain you are experiencing will dictate the med. From what you mention here is sounds to me that the pain doc you saw, blew you off.
All that said, I think you'll enjoy reading these couple health pages which describes the differences in pain and treatment:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Nerve-Neuropathic-Pain---A-Primer/show/371?cid=36
http://www.medhelp.org/health_pages/Multiple-Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36
Nice to have you Patch! I hope we can help.
-Shell
p.s. which DMD treatment are you on?
It is sad that the pain specialist told you that. I have moved about abit the past three years and managed to see three Pain Specialists which all were the head of the Pain Clinics in Major Hospitals I attended in different states.
You must see another pain specialist if the one you are seeing does not acknowledge your pain. You are lucky your own Doctor does like mine has also have. We are not drug addicts just people who have a body which does fustrating things to us.
The Major Hospital I go to every three months has a wonderful Pain Clinic and the Doctors never rush you and they geniunely care. On my visit consult their the Doctor spent 1 hour and 45 minutes with me. Thankfully his time and care found out my problem after 4 years.
Lets know how it turns out for you.
Rose Anne
You must see another pain specialist if the one you are seeing does not acknowledge your pain. You are lucky your own Doctor does like mine has also have. We are not drug addicts just people who have a body which does fustrating things to us.
The Major Hospital I go to every three months has a wonderful Pain Clinic and the Doctors never rush you and they geniunely care. On my visit consult their the Doctor spent 1 hour and 45 minutes with me. Thankfully his time and care found out my problem after 4 years.
Lets know how it turns out for you.
Rose Anne
Sarah,
Thanks so much for the quick response. I am certainly looking forward to being involved in this community. In May, I was experiencing numbness/tingling/hot/cold sensations on the left side of my face with eventually traveled down the left side of my body. My Primary Care Doctor has always thought I may have MS, but knew we could not do anything about it until I had an episode, so he ordered my first brain MRI, and I got an appt. with a neurologist. Sure enough, the MRI Report confirmed MS lesions. The neurologist ordered another MRI w/contrast, a spinal tap, and blood work. All confirmed RRMS I suppose. Officially though, I did not get a definite diagnosis until the beginning of October. I started the injections about two weeks ago.
As far as the chronic pain goes, the doctors have tried all sorts of muscle relaxers, narcotic pain meds, nerve pain meds, etc. I cannot take NSAIDS due to GERD. The problem is that the doctors are not suggesting any treatment for getting my pain under control. I will be going back to my Primary Care Physician this week to talk to him again about pain management, as he seems to be the only doctor that believes me, listens to me, and doesn't think I'm a drug addict. I would like to start swimming, but I cannot do that until the pain is managed. Doctor's have pretty much acted/been clueless. One spinal surgeon told me to "go to a pain specialist, then a chiropractor, then try acupuncture, etc.". The pain specialist I saw today pretty much told me there was nothing he could do for me... I had to push him to order an MRI. Half the doctors think it's MS related, half of them think it's not. It's all just frustrating. I can hardly sleep, walk, etc. due to the pain. I had to go on leave from work and file disability. This is all in the middle of midterms at college.
Thank you for your interest, understanding, and compassion.
- Jenny
Thanks so much for the quick response. I am certainly looking forward to being involved in this community. In May, I was experiencing numbness/tingling/hot/cold sensations on the left side of my face with eventually traveled down the left side of my body. My Primary Care Doctor has always thought I may have MS, but knew we could not do anything about it until I had an episode, so he ordered my first brain MRI, and I got an appt. with a neurologist. Sure enough, the MRI Report confirmed MS lesions. The neurologist ordered another MRI w/contrast, a spinal tap, and blood work. All confirmed RRMS I suppose. Officially though, I did not get a definite diagnosis until the beginning of October. I started the injections about two weeks ago.
As far as the chronic pain goes, the doctors have tried all sorts of muscle relaxers, narcotic pain meds, nerve pain meds, etc. I cannot take NSAIDS due to GERD. The problem is that the doctors are not suggesting any treatment for getting my pain under control. I will be going back to my Primary Care Physician this week to talk to him again about pain management, as he seems to be the only doctor that believes me, listens to me, and doesn't think I'm a drug addict. I would like to start swimming, but I cannot do that until the pain is managed. Doctor's have pretty much acted/been clueless. One spinal surgeon told me to "go to a pain specialist, then a chiropractor, then try acupuncture, etc.". The pain specialist I saw today pretty much told me there was nothing he could do for me... I had to push him to order an MRI. Half the doctors think it's MS related, half of them think it's not. It's all just frustrating. I can hardly sleep, walk, etc. due to the pain. I had to go on leave from work and file disability. This is all in the middle of midterms at college.
Thank you for your interest, understanding, and compassion.
- Jenny
Hi and welcome to the forum and you will find that it is a wonderful community to be a part of full of kind, helpful understanding and knowledgeable people.
It would be really interesting to know what led up to your diagnosis in May if you felt able to share this. I have not experienced anything like the chronic pain you describe and it sounds as if it is baffling all the doctors. This must be so frustrating for you and I am wondering what treatment the doctors are suggesting to try and get your pain under control as you should not be suffering like this.
I am sure that others will chip in who may be able to offer more help than me but I just wanted to say Hi.
Best wishes
Sarah
It would be really interesting to know what led up to your diagnosis in May if you felt able to share this. I have not experienced anything like the chronic pain you describe and it sounds as if it is baffling all the doctors. This must be so frustrating for you and I am wondering what treatment the doctors are suggesting to try and get your pain under control as you should not be suffering like this.
I am sure that others will chip in who may be able to offer more help than me but I just wanted to say Hi.
Best wishes
Sarah
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If there are doctors that don't think this is related to the MS, I think I'd press one of them to develop a systemic diagnostic plan to find out what IS causing you so much pain. A pain specialist (in my experience) doesn't usually order tests or get called in for diagnosis. They work with people to help them live with chronic pain or administer less commonly used treatments to relieve pain syndromes.
I would encourage you to find a place where you can get in a pool to exercise. You may not be able to swim at the moment but it is often very helpful to start moving around with the assistance and resistance of water. There are often community programs or therapy pools at hospital affiliated physical therapy clinics. The social contact is a big plus as well.
I hope you get some answers soon. It sounds like you have been dealing with multiple issues for a while now and you have a lot of life ahead of you to enjoy yet.
We often won't have exact answers here but we are pretty good at guiding each other in the right direction. Welcome to our place.
Mary