Can you help - Opinions, advice?
An_248307 posted:
First of all, I will apologise for this being long. In 2008,I had my first incident - this included trouble with speech, walking, trouble with vision (colors). Had an MRI and it showed (spots) in the brain. Fastforward to 3/23/2012 - was wroking as a NUA @ local hospital and hurt back while catching a falling patient. Yes, had back pain, but also had "stroke-like" symptoms of right sided weakness, facial drooping. My doc sent me for MRI which did not show stroke but showed "spots" on brain again. She called me on the phone and said I had MS. and refered me to Neuro which then said "no MS". I then (in April) had incident where I was paralysed waist down and had slurred, slowed speech, pins and needle feeling which radiated from neck to scalp and also went down extremities - I ended up in CCU for a couple of days in which I somewhat recovered (was able to walk again). I have had several MRI's and the doc said nothing wrong (except the MRI showing "spots"), had other test and the only abnormal on was my SSEP but I guess the docs do not think it is important. Had LP and they say that was normal. I live in central Maine and our hospitals are small and not well equipt (jmo).. I have been having times where I am fairly ok (still in pain but able to function) and times where I just feel so uncomfortable. I am now using a cane most of the time and at this moment, trying to get a doctor to LISTEN to me and my problems.Been told everything from "just in my head, you must be depressed" to just plain being ignored. I KNOW there is SOMETHING wrong - this is not like me. Always been strong and able to do my nursing duties with no problems. Now I am out of work and barely able to do day to day simple activities. I have to either have someone with me if I go out or have my cell in my pocket cause I have had falls cause my legs just give out. I just want to know if this could in fact be MS and just get on with treatment so me and my family can just go forward with life and at least KNOW what is going on. It also seems that my symptoms are progressing (getting worse and more often) in the past 7 months. Any advice or opinions would be greatly appreciated
1 Replies |Watch This Discussion | Report This| Share this:Can you help - Opinions, advice?First of all, I will apologise for this being long. In 2008,I had my first incident - this included trouble with speech, walking, trouble with vision (colors). Had an MRI and it showed (spots) in the brain. Fastforward to 3/23/2012 - was wroking as a NUA @ local hospital and hurt back while catching a falling patient. Yes, had back pain, but also had "stroke-like" symptoms of right sided weakness, facial drooping. My doc sent me for MRI which did not show stroke but showed "spots" on brain again. She called me on the phone and said I had MS. and refered me to Neuro which then said "no MS". I then (in April) had incident where I was paralysed waist down and had slurred, slowed speech, pins and needle feeling which radiated from neck to scalp and also went down extremities - I ended up in CCU for a couple of days in which I somewhat recovered (was able to walk again). I have had several MRI's and the doc said nothing wrong (except the MRI showing "spots"), had other test and the only abnormal on was my SSEP but I guess the docs do not think it is important. Had LP and they say that was normal. I live in central Maine and our hospitals are small and not well equipt (jmo).. I have been having times where I am fairly ok (still in pain but able to function) and times where I just feel so uncomfortable. I am now using a cane most of the time and at this moment, trying to get a doctor to LISTEN to me and my problems.Been told everything from "just in my head, you must be depressed" to just plain being ignored. I KNOW there is SOMETHING wrong - this is not like me. Always been strong and able to do my nursing duties with no problems. Now I am out of work and barely able to do day to day simple activities. I have to either have someone with me if I go out or have my cell in my pocket cause I have had falls cause my legs just give out. I just want to know if this could in fact be MS and just get on with treatment so me and my family can just go forward with life and at least KNOW what is going on. It also seems that my symptoms are progressing (getting worse and more often) in the past 7 months. Any advice or opinions would be greatly appreciated
hackwriter responded:
Hi,
Your story is a familiar one among MS patients: Being told it's all in our heads, having brain lesions and neurological symptoms but a negative LP, and generally getting blown off by doctors. I went through that myself during my very first attack. I saw six specialists in various disciplines. The first neurologist told me what yours told you, it's stress, it's a panic attack, it's depression, blah, blah, and I knew that it wasn't true. Whenever a doctor tells you it's all in your head, that's code for they are not interested in investigating further.
I did find another neurologist who took me seriously, put me in the hospital, and did all the MS diagnostic testing. He suspected MS but couldn't give me the diagnosis until I had another attack. I was in limbo for five more years until the that second attack came, and with it, a diagnosis and treatment.
So here's what you do: Find another neurologist--preferably an MS specialist, but if there are none nearby then a neuro who treats a lot of MS patients will do. Get a second opinion, and a third and a fourth until somebody takes your case seriously and explores all the possibilities. It is hard to diagnose MS, there are many other conditions that mimic this disease. You might have to travel a long distance to find an MS specialist, but it would be worth the expense and time in the end. Easy for me to say, I know, but only you can know how long you are willing to put up with these symptoms without having any answers.
The National Multiple Sclerosis Society has a list of MS specialists in the 50 states, go to their website at http://nationalmssociety.org/index.aspx , click on Find a Chapter at the top of the page for your local affiliate and contact them about that list of doctors.
You are your own best advocate, so fight for yourself and demand their attention. Log all your symptoms and bring it to your appointments. I hope you'll let us know what you find out. Take good care of yourself.
Kim
Your story is a familiar one among MS patients: Being told it's all in our heads, having brain lesions and neurological symptoms but a negative LP, and generally getting blown off by doctors. I went through that myself during my very first attack. I saw six specialists in various disciplines. The first neurologist told me what yours told you, it's stress, it's a panic attack, it's depression, blah, blah, and I knew that it wasn't true. Whenever a doctor tells you it's all in your head, that's code for they are not interested in investigating further.
I did find another neurologist who took me seriously, put me in the hospital, and did all the MS diagnostic testing. He suspected MS but couldn't give me the diagnosis until I had another attack. I was in limbo for five more years until the that second attack came, and with it, a diagnosis and treatment.
So here's what you do: Find another neurologist--preferably an MS specialist, but if there are none nearby then a neuro who treats a lot of MS patients will do. Get a second opinion, and a third and a fourth until somebody takes your case seriously and explores all the possibilities. It is hard to diagnose MS, there are many other conditions that mimic this disease. You might have to travel a long distance to find an MS specialist, but it would be worth the expense and time in the end. Easy for me to say, I know, but only you can know how long you are willing to put up with these symptoms without having any answers.
The National Multiple Sclerosis Society has a list of MS specialists in the 50 states, go to their website at http://nationalmssociety.org/index.aspx , click on Find a Chapter at the top of the page for your local affiliate and contact them about that list of doctors.
You are your own best advocate, so fight for yourself and demand their attention. Log all your symptoms and bring it to your appointments. I hope you'll let us know what you find out. Take good care of yourself.
Kim
Report This| Share this:Can you help - Opinions, advice?Hi,<br /><br />Your story is a familiar one among MS patients: Being told it's all in our heads, having brain lesions and neurological symptoms but a negative LP, and generally getting blown off by doctors. I went through that myself during my very first attack. I saw six specialists in various disciplines. The first neurologist told me what yours told you, it's stress, it's a panic attack, it's depression, blah, blah, and I knew that it wasn't true. Whenever a doctor tells you it's all in your head, that's code for they are not interested in investigating further. <br /><br />I did find another neurologist who took me seriously, put me in the hospital, and did all the MS diagnostic testing. He suspected MS but couldn't give me the diagnosis until I had another attack. I was in limbo for five more years until the that second attack came, and with it, a diagnosis and treatment.<br /><br />So here's what you do: Find another neurologist--preferably an MS specialist, but if there are none nearby then a neuro who treats a lot of MS patients will do. Get a second opinion, and a third and a fourth until somebody takes your case seriously and explores all the possibilities. It is hard to diagnose MS, there are many other conditions that mimic this disease. You might have to travel a long distance to find an MS specialist, but it would be worth the expense and time in the end. Easy for me to say, I know, but only you can know how long you are willing to put up with these symptoms without having any answers.<br /><br />The National Multiple Sclerosis Society has a list of MS specialists in the 50 states, go to their website at <a rel="nofollow" href="http://nationalmssociety.org/index.aspx">http://nationalmssociety.org/index.aspx</a> , click on Find a Chapter at the top of the page for your local affiliate and contact them about that list of doctors.<br /><br />You are your own best advocate, so fight for yourself and demand their attention. Log all your symptoms and bring it to your appointments. I hope you'll let us know what you find out. Take good care of yourself.<br /><br />Kim
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