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Permanent Brain Fog
Oct 15, 2009 08:14AM
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I spoke to my family lawyer the other day because disability has turned me down X3. He recommended that I send for my records regarding the psycho-neuro testing I had done in 2003. I had forgotten about the testing until reading about it in this forum, by the way. In any case, I just received the records and BOY AM I GLAD!!! There were notes regarding things I had told the Dr. that I had totally forgotten about!
I have been wondering what had caused the MS to rear it's ugly head after being so quiet for so many years and it appears I had told the testing Dr. that I had just had two head injuries, the most recent of which was only about 3 months before the testing. I had also forgotten about the head injuries, and I did not know until reading Quix's posts that a relapse could possibly be provoked by head trauma.
I was shocked when I read that he had diagnosed me as Multiple Sclerosis with mild visualspacial and visual memory difficulties. He had also mentioned that it was imperative that further relapses were prevented in order to prevent further cognitive deterioration. Also stated a trail of MS drugs might be appropriate.
Unfortunately, I was forced to change Dr.s when my insurance at work changed and the next Neuro I saw promptly stated that I did not have MS because the lesions (9 of them) were not typical. When I asked about my neurogenic bladder ( diagnosed by urodynamic study) he said "Just push hard when you pee." Well, admittedly that helps, but it doesnt explain why my bladder does not empty on it's own. He also did not review the results of my psycho-neuro testing.
Because this Neuro brought out a textbook and said "I will show you what MS looks like" and indeed, it sure didnt resemble my brain MRI, I accepted his diagnosis. The pain in my left leg got so bad I finally went back to my GP and he ordered a lumbar spine MRI which showed degenerative changes and he sent me to a spine clinic. I was treated for two years for diskogenic pain, but the pain continued to worsen and then resulted in numbness in both legs from knee to toe. My spine Dr. ordered another brain MRI (to his credit) because I had mentioned that I had been previously diagnosed with MS, but the most recent Neuro had "taken back" the diagnosis.
Unfortunately, the new MRI had a note in it that the previous Neuro had said I did not have MS. I believe this may have biased the radiologist with regard to what he saw. I now had 10 lesions, but they did not look like MS .
My question WHY WERE THERE NOW 10? And what the heck are they? I wish I had gotten copies of my records from the original Neuro who 12 years ago had diagnosed probable MS based on just 3-4 lesions and a bladder that only empties when I strain like a woman in labor. With the new records in hand, I will forever keep track of what happens from now on.
I have been wondering what had caused the MS to rear it's ugly head after being so quiet for so many years and it appears I had told the testing Dr. that I had just had two head injuries, the most recent of which was only about 3 months before the testing. I had also forgotten about the head injuries, and I did not know until reading Quix's posts that a relapse could possibly be provoked by head trauma.
I was shocked when I read that he had diagnosed me as Multiple Sclerosis with mild visualspacial and visual memory difficulties. He had also mentioned that it was imperative that further relapses were prevented in order to prevent further cognitive deterioration. Also stated a trail of MS drugs might be appropriate.
Unfortunately, I was forced to change Dr.s when my insurance at work changed and the next Neuro I saw promptly stated that I did not have MS because the lesions (9 of them) were not typical. When I asked about my neurogenic bladder ( diagnosed by urodynamic study) he said "Just push hard when you pee." Well, admittedly that helps, but it doesnt explain why my bladder does not empty on it's own. He also did not review the results of my psycho-neuro testing.
Because this Neuro brought out a textbook and said "I will show you what MS looks like" and indeed, it sure didnt resemble my brain MRI, I accepted his diagnosis. The pain in my left leg got so bad I finally went back to my GP and he ordered a lumbar spine MRI which showed degenerative changes and he sent me to a spine clinic. I was treated for two years for diskogenic pain, but the pain continued to worsen and then resulted in numbness in both legs from knee to toe. My spine Dr. ordered another brain MRI (to his credit) because I had mentioned that I had been previously diagnosed with MS, but the most recent Neuro had "taken back" the diagnosis.
Unfortunately, the new MRI had a note in it that the previous Neuro had said I did not have MS. I believe this may have biased the radiologist with regard to what he saw. I now had 10 lesions, but they did not look like MS .
My question WHY WERE THERE NOW 10? And what the heck are they? I wish I had gotten copies of my records from the original Neuro who 12 years ago had diagnosed probable MS based on just 3-4 lesions and a bladder that only empties when I strain like a woman in labor. With the new records in hand, I will forever keep track of what happens from now on.
Ah ol’ runaround.
You probably know this, but I feel it may help to review some things about diagnosing MS.
There is no single test, two or even three tests to formally and with confidence to diagnose a patient with MS.
Lesions on the brain are not necessarily MS, but could be from other health issues. Nonetheless, lesions are not a good thing. Cognitive difficulties can be due to many health issues besides MS, same goes for the urinary problems.
You need to see a MS Specialists not just an ordinary Neurologist. I’m not bagging on them in general, but it’s not easy to make a MS diagnoses. I will also say it’s not always a good thing (except for an explanation of symptoms). The ramifications of a MS diagnosis have profound financial consequences and most are not good.
I went down that road beginning in ’98 and it took about 3 years and 10 different doctors / specialists to get an answer, then the diagnoses of MS. In my case the following tests were used to diagnose me: Visual Evoke Potential, Urinary Dynamics, Spinal Tap with the associated tests (checking the ocular bands), MRI, medical history and physical exam.
It was my Urologists that made the connection to MS with the Urinary Dynamics testing. That got the ball rolling and the necessary referrals to other specialists.
All test results pointed to MS and I was formally diagnosed in December ’01. To some extent, I was relieved to have my answer. If I had to do it all over again, I might skip it, because I can no longer get private insurance and the labor market is all but closed (I’m self employed).
Disability is not much help, unless you cannot do ANY work of ANY kind. The other sad thing about disability is you have to be virtually penniless and have few-to-none assets; otherwise, the courts expect you to liquidate your assets before getting disability. Everything you’ve work for all your life that can be liquidated will have to go. Some exemptions are your home, one vehicle, any 401 or other retirement accounts and a few others. If you can sit and answer the phone, you’re probably going to have a very difficult time getting Disability. You’ll need to get an attorney involved to be successful.
Think twice about going for disability; it’s a one way street, and check your yearly statement from the IRS about your contributions and whether you even qualify and what your estimated monthly disability payment will be. It’s not pretty.
As for the lesions, my three MRIs show many of them, coming and going over time. They’re always present and I still have all the symptoms of my diagnoses. Fortunately for now, I have what is referred to as a mild case of MS. It’s a degenerative disease and will get worse as time goes on.
I hope you don’t have MS and you find out what is going on. Be a pest to the doctors and stay on them to get an answer. Double check them with other doctors and specialists. Learn all you can about MS and be prepared for all the life altering changes that come with the diagnoses.
You probably know this, but I feel it may help to review some things about diagnosing MS.
There is no single test, two or even three tests to formally and with confidence to diagnose a patient with MS.
Lesions on the brain are not necessarily MS, but could be from other health issues. Nonetheless, lesions are not a good thing. Cognitive difficulties can be due to many health issues besides MS, same goes for the urinary problems.
You need to see a MS Specialists not just an ordinary Neurologist. I’m not bagging on them in general, but it’s not easy to make a MS diagnoses. I will also say it’s not always a good thing (except for an explanation of symptoms). The ramifications of a MS diagnosis have profound financial consequences and most are not good.
I went down that road beginning in ’98 and it took about 3 years and 10 different doctors / specialists to get an answer, then the diagnoses of MS. In my case the following tests were used to diagnose me: Visual Evoke Potential, Urinary Dynamics, Spinal Tap with the associated tests (checking the ocular bands), MRI, medical history and physical exam.
It was my Urologists that made the connection to MS with the Urinary Dynamics testing. That got the ball rolling and the necessary referrals to other specialists.
All test results pointed to MS and I was formally diagnosed in December ’01. To some extent, I was relieved to have my answer. If I had to do it all over again, I might skip it, because I can no longer get private insurance and the labor market is all but closed (I’m self employed).
Disability is not much help, unless you cannot do ANY work of ANY kind. The other sad thing about disability is you have to be virtually penniless and have few-to-none assets; otherwise, the courts expect you to liquidate your assets before getting disability. Everything you’ve work for all your life that can be liquidated will have to go. Some exemptions are your home, one vehicle, any 401 or other retirement accounts and a few others. If you can sit and answer the phone, you’re probably going to have a very difficult time getting Disability. You’ll need to get an attorney involved to be successful.
Think twice about going for disability; it’s a one way street, and check your yearly statement from the IRS about your contributions and whether you even qualify and what your estimated monthly disability payment will be. It’s not pretty.
As for the lesions, my three MRIs show many of them, coming and going over time. They’re always present and I still have all the symptoms of my diagnoses. Fortunately for now, I have what is referred to as a mild case of MS. It’s a degenerative disease and will get worse as time goes on.
I hope you don’t have MS and you find out what is going on. Be a pest to the doctors and stay on them to get an answer. Double check them with other doctors and specialists. Learn all you can about MS and be prepared for all the life altering changes that come with the diagnoses.
Thanks for the information, RBNICT. I just found out yesterday that disability turned me down for the 4th time. I have a lawyer lined up, but I agree, it will be a struggle. There is just no way to prove the amount of pain I am having. They just keep saying I can manage a desk job even though I cannot sit or stand for more than a few minutes at a time or walk for more than a hundred feet or so. As far as assets, I have already lost everything so, it cannot get much worse financially.
I had suspected that an MS diagnosis could prevent me from getting private insurance, and it that is the sad thing---The disability people insist I am able to work but who the H!@# is ever going to hire me?
Anyway, thanks for taking the time to write. You provided some very useful insight. I hope all goes well for you.
I had suspected that an MS diagnosis could prevent me from getting private insurance, and it that is the sad thing---The disability people insist I am able to work but who the H!@# is ever going to hire me?
Anyway, thanks for taking the time to write. You provided some very useful insight. I hope all goes well for you.
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