Aa
CM may be a symptom but CSM is not
Hi all. I haven't been able to sleep so I spent most of last night going over my reports, mri's etc. The new neuro had said it was CM and is starting me on bacolphen. As some here pointed out, and my research confirmed, CM alone is a symptom. But the following article (I hope the link works) describes me exactly (minus a few frontal brain lesions) AND my cervical mri reports due state cervical spondylosis. Sooo, maybe my diagnosis is CSM after all. I will keep looking though.
here is the link;
[url]http://www.aafp.org/afp/20000901/1064.html[/url]
here is the link;
[url]http://www.aafp.org/afp/20000901/1064.html[/url]
I just finished reading the entire article. Did you notice that they included above the cervical cord symptoms of headache and vertigo? To answer your first question second: I have headaches, dizziness, fatigue and some cognitive problems. My neuro is blaming the use of inappropiate meds such as valium and percocet for the cognition, dizziness and fatigue. But as you read in the article, vertigo and headache can be symptoms of CSM. I do not have any facial or hearing problems.
Okay, here is a timeline showing how easily things are dismissed or considered something else until the damage has been done.
Spring of 2006: right hand numbess and weakness, primary care provider runs a slew of blood work for rheumatoid factors, lymmes, ect. Says no CTS (carpal tunnel syndrome) present by physical exam. All bloodwork comes back normal except thyroid. Since Hashimoto's thyroiditis (which I turn out to have) can cause such symptoms that is what he figures it is. I spend the next two months getting my thyroid hormone levels adjusted and having my symptoms in my hand get worse.
Fall 2006: My symptoms now include my entire right arm and shoulder, lower back and starting in the left hand. Despite having a negative rheumatoid factor I am sent to an imuno-rheumatologist who does all the bloodwork again, says I have negative symptoms for CTS, and diagnosis me with sero-negative inflammatory arthritis (also auto-immune). He orders x-rays only of my hands. As I complain more and more he plays with my meds and finally starts me on lyrica which is the only thing that works (probably because it is for nerve pain). In late fall he listens to me complain still and this time orders an x-ray of my whole right arm, shoulder and neck. The neck x-ray showed a narrowing of the disc spaces C4-5, C5-6. he sends me for an mri which showed the spondylolisis as well as herniated discs.
Winter 2007: Saw my neurosurgeon who said agina no CTS based on physical exam, agreed about the arthritis and said he wanted to do nerve blocks in my neck to see if they helped. I had one, gave releif for about two weeks, had second one four weeks after the first-no releif, actually made things worse.
May 1, 2007: Had the anterior cervical fusion done, two level, with cadaver bone grafts and fusion plates. Seemed to do the trick.
July 1, 2007: had a bad fall, sympotoms seemed to return three fold from before surgey.
July 14: had sever attack of cervical radiculapthy, ended up in ER
After that I started to get more symptoms, left arm involvment, lower leg problems, falling, stumbling, balance is shot, muscle spasms that valium and/or flexierl cannot stop, severe pain that seems to be playing roulette..my right ankle hurts, spin the wheel and now my right thigh hurts, spin the wheel again and now my left shoulder hurts.
first neuro (weanie) said all the problems were mechanical, did nerve conduction tests, saw issues with my right arm, neck and right leg but didn't seem to care as I already have spondylolisis in my lower back as well. Said I had CTS and possibly a pinched nerve in my neck, go see neurosurgeon.
This fall I had two lumbar nerve blocks that have somewhat helped and will get the third next week.
I had sent all my reports to JHHS, there I received the diagnosis of CSM. I have all the symptoms and my history fits. He said that the valium, et al would do no good as the spasms and pain are nerve induced and meds designed to relax muscles will not tell the nerves to relax, that is what the baclophen is for. he does not feel that my frontal lesions are MS or even related to my symptoms but he did not dismiss them or my concern for them. They will be monitored.
From my reading I have found thatof people with CSM 20% improve in the first year, 40% stay the same as when diagnosed and 40% will either worsen or go into a relapsing/remitting type of symptom cycle. It can be almost considered an MS of the spine but with the myelin damage due to mechanical pressure rather than disease.
soo, that's my story with this MS mimic, or as I called it, MS's little sister. My neuro said to not let the surgeons touch my neck any further as more nerve damage may occur and not to have a lumbar spine decompression until he has gone over all of those reports as well. I have a full PT program to start but also many restrictions right now to prevent further damage and try and allow the areas to heal as much as possible.
Along the way each of my docs (except the weanie neuro) did what they thought was best practice and looked to the simiplest explanation as the right one (because normally it is) BUT, if I had not gone Over a year from first symptom until surgery, if my primary care doc thopught to xray my neck back when I first saw him, the damage I have now may have been prevented. I am seriously thinking of spending this time I am stuck at home now launching and awarness campaign to get the docs thinking ahead and doing the brain scans, cervical mri's etc when patients first complain to rule out or catch the more serious diagnosis early. when hearing hoofbeats they need to think of the zebras before assuming it's just a horse.
Moeck
Okay, here is a timeline showing how easily things are dismissed or considered something else until the damage has been done.
Spring of 2006: right hand numbess and weakness, primary care provider runs a slew of blood work for rheumatoid factors, lymmes, ect. Says no CTS (carpal tunnel syndrome) present by physical exam. All bloodwork comes back normal except thyroid. Since Hashimoto's thyroiditis (which I turn out to have) can cause such symptoms that is what he figures it is. I spend the next two months getting my thyroid hormone levels adjusted and having my symptoms in my hand get worse.
Fall 2006: My symptoms now include my entire right arm and shoulder, lower back and starting in the left hand. Despite having a negative rheumatoid factor I am sent to an imuno-rheumatologist who does all the bloodwork again, says I have negative symptoms for CTS, and diagnosis me with sero-negative inflammatory arthritis (also auto-immune). He orders x-rays only of my hands. As I complain more and more he plays with my meds and finally starts me on lyrica which is the only thing that works (probably because it is for nerve pain). In late fall he listens to me complain still and this time orders an x-ray of my whole right arm, shoulder and neck. The neck x-ray showed a narrowing of the disc spaces C4-5, C5-6. he sends me for an mri which showed the spondylolisis as well as herniated discs.
Winter 2007: Saw my neurosurgeon who said agina no CTS based on physical exam, agreed about the arthritis and said he wanted to do nerve blocks in my neck to see if they helped. I had one, gave releif for about two weeks, had second one four weeks after the first-no releif, actually made things worse.
May 1, 2007: Had the anterior cervical fusion done, two level, with cadaver bone grafts and fusion plates. Seemed to do the trick.
July 1, 2007: had a bad fall, sympotoms seemed to return three fold from before surgey.
July 14: had sever attack of cervical radiculapthy, ended up in ER
After that I started to get more symptoms, left arm involvment, lower leg problems, falling, stumbling, balance is shot, muscle spasms that valium and/or flexierl cannot stop, severe pain that seems to be playing roulette..my right ankle hurts, spin the wheel and now my right thigh hurts, spin the wheel again and now my left shoulder hurts.
first neuro (weanie) said all the problems were mechanical, did nerve conduction tests, saw issues with my right arm, neck and right leg but didn't seem to care as I already have spondylolisis in my lower back as well. Said I had CTS and possibly a pinched nerve in my neck, go see neurosurgeon.
This fall I had two lumbar nerve blocks that have somewhat helped and will get the third next week.
I had sent all my reports to JHHS, there I received the diagnosis of CSM. I have all the symptoms and my history fits. He said that the valium, et al would do no good as the spasms and pain are nerve induced and meds designed to relax muscles will not tell the nerves to relax, that is what the baclophen is for. he does not feel that my frontal lesions are MS or even related to my symptoms but he did not dismiss them or my concern for them. They will be monitored.
From my reading I have found thatof people with CSM 20% improve in the first year, 40% stay the same as when diagnosed and 40% will either worsen or go into a relapsing/remitting type of symptom cycle. It can be almost considered an MS of the spine but with the myelin damage due to mechanical pressure rather than disease.
soo, that's my story with this MS mimic, or as I called it, MS's little sister. My neuro said to not let the surgeons touch my neck any further as more nerve damage may occur and not to have a lumbar spine decompression until he has gone over all of those reports as well. I have a full PT program to start but also many restrictions right now to prevent further damage and try and allow the areas to heal as much as possible.
Along the way each of my docs (except the weanie neuro) did what they thought was best practice and looked to the simiplest explanation as the right one (because normally it is) BUT, if I had not gone Over a year from first symptom until surgery, if my primary care doc thopught to xray my neck back when I first saw him, the damage I have now may have been prevented. I am seriously thinking of spending this time I am stuck at home now launching and awarness campaign to get the docs thinking ahead and doing the brain scans, cervical mri's etc when patients first complain to rule out or catch the more serious diagnosis early. when hearing hoofbeats they need to think of the zebras before assuming it's just a horse.
Moeck
I just got home, it's been a long weekend. I'll post everything in the morning (Monday) symptoms, etc. And yes, I had an anterior cervical disectomy and fusion, two level, with cadaver disc replacments and a titanium plate with screws
moeck
moeck
Did you see the link? CSM is a definite mimic of MS, and it needs consideration. I've been looking for your old, info, where you tell your whole story. Would you tell me what date you posted it and I'll go read it. Do you have any symptoms that would be from "above" the cervical cord like dizziness, fatigue, visual, hearing, facial stuff, cognitive, ?
Quix
Quix
You gave me the push to read about the entity of Cervical Myelopathy with Spondylolisis. I have learned a lot. Like, with enough degeneration in the spine, there can be compromise (damage) to the blood supply of the spinal cord and thus cause white matter disease. You've probably read it, but here is a nice up-to-date articel on it from eMedicine:
http://www.emedicine.com/PMR/topic27.htm
"We will roast no neuro before his time."
Quix
http://www.emedicine.com/PMR/topic27.htm
"We will roast no neuro before his time."
Quix
Just thought I'd add what the JHHS website says about CM.
"Cervical Myelopathy
Specialty Area: Spine Center
Causes
Cervical myelopathy is a constellation of symptoms. Many different disease processes can cause this disorder:
Tumors within the spinal cord
Extrinsic tumors compressing the spinal cord
Vascular malformations
Neurologic disease (such as transverse myelitis)
Extrinsic compression on the spinal cord from spondylosis, degenerative arthritis and rheumatoid arthritis. "
The neuro yesterday did give CM as a diagnosis but the more I am learning about it, the more I am willing to go back in six weeks prepared to pin him down for a definitve cause. He's not ready to be roasted yet
moeck
"Cervical Myelopathy
Specialty Area: Spine Center
Causes
Cervical myelopathy is a constellation of symptoms. Many different disease processes can cause this disorder:
Tumors within the spinal cord
Extrinsic tumors compressing the spinal cord
Vascular malformations
Neurologic disease (such as transverse myelitis)
Extrinsic compression on the spinal cord from spondylosis, degenerative arthritis and rheumatoid arthritis. "
The neuro yesterday did give CM as a diagnosis but the more I am learning about it, the more I am willing to go back in six weeks prepared to pin him down for a definitve cause. He's not ready to be roasted yet
moeck
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