Aa
I'm new, please help
I was dx with small fiber axonal neuropathy in march 07 when I suddenly became paralyzed from waist down. They did a a biopsy from my ankle to confirm and the paralysis resolved itself in a few weeks. A couple of months before that, I had cataract surgery *VERY painful* and my sye sight was terrible ever since.
I have since changed my eye dr and he has found that I've lost my peripheal vision. I have to wear a indwelling foley due to my bladder not returning from the paralysis and a resultant numbness in one foot. I'm only 47. My neurologist says I do not have MS.
Yesterday I came across a corolation between loss of periphial vision and ms. I've been discouraged from changing drs due to being in louisiana. Anyone have an opinion? Oh, I have epilepsy and ankylosing spondylitis also. Thanks and sorry for rambling.
I have since changed my eye dr and he has found that I've lost my peripheal vision. I have to wear a indwelling foley due to my bladder not returning from the paralysis and a resultant numbness in one foot. I'm only 47. My neurologist says I do not have MS.
Yesterday I came across a corolation between loss of periphial vision and ms. I've been discouraged from changing drs due to being in louisiana. Anyone have an opinion? Oh, I have epilepsy and ankylosing spondylitis also. Thanks and sorry for rambling.
I am so sorry to hear that you now have pneumonia! This seems to me like all of your problems are getting way out of hand and you need a really good pcp to help you get your ducks in a row so to speak!
As I said in my last post, it is imperative now that you have an MRI done by an MS Neurologist...and for one neurologist to throw a diagnosis out the window saying another neuro doesn't know how to read MRI's, WITHOUT following up to find out what he thinks is the problem is ridiculous!
Is there an MS specialist in your area? Is there any way that you could send your last brain MRI to the MS specialist to read?
Honey, you need some medical help desperately but I mean VALID medical help!
Who is treating your pneumonia? Do you have a pcp right now and if you do, is there any opportunity for you to change to a different pcp?
I know I have alot of questions but I am VERY concerned about your physical and mental health! You need to have someone working on YOUR BEHALF because you are too ill to do it yourself and that is what a good pcp is supposed to do!
Please, if you feel up to it, I would appreciate it if you can answer the questions I have laid out. I want to help you and I don't want to lose contact with you ok?
Lots of Hugs,
Rena705
As I said in my last post, it is imperative now that you have an MRI done by an MS Neurologist...and for one neurologist to throw a diagnosis out the window saying another neuro doesn't know how to read MRI's, WITHOUT following up to find out what he thinks is the problem is ridiculous!
Is there an MS specialist in your area? Is there any way that you could send your last brain MRI to the MS specialist to read?
Honey, you need some medical help desperately but I mean VALID medical help!
Who is treating your pneumonia? Do you have a pcp right now and if you do, is there any opportunity for you to change to a different pcp?
I know I have alot of questions but I am VERY concerned about your physical and mental health! You need to have someone working on YOUR BEHALF because you are too ill to do it yourself and that is what a good pcp is supposed to do!
Please, if you feel up to it, I would appreciate it if you can answer the questions I have laid out. I want to help you and I don't want to lose contact with you ok?
Lots of Hugs,
Rena705
Thank you for your comments. No, my neuro is not an MS neuro. I have had MRIs of the brain and he said they were neg. I went to a neuro in New Orleans and he said MS. Went back home...old neuro threw it out the window, said other neuro doesn't know how to read MRI.....
Sorry it took me so long to comment but I have pneumonia now...it's always something!
Back to crazy neuro
He won't do lumbar, says it'a a "kill or cure"...knows to use those words on me because I had a son who died at six yrs of spinal meningitis...long story.
I'm calling the eye clinic today to ask about the optic neuritis. I'll let ya'll know.
Thanks for the help. Depression setting in from being sick and from daughter and grandson (17 mths) moving to base (Navy) with son in law. They've been with me for six months. I don't drive.
Ok, here come the "poor me" tears to go with the pounding headache.
Thanks and cyber hugs to all.
Sorry it took me so long to comment but I have pneumonia now...it's always something!
Back to crazy neuro
He won't do lumbar, says it'a a "kill or cure"...knows to use those words on me because I had a son who died at six yrs of spinal meningitis...long story.
I'm calling the eye clinic today to ask about the optic neuritis. I'll let ya'll know.
Thanks for the help. Depression setting in from being sick and from daughter and grandson (17 mths) moving to base (Navy) with son in law. They've been with me for six months. I don't drive.
Ok, here come the "poor me" tears to go with the pounding headache.
Thanks and cyber hugs to all.
Hi, and welcome to the forum!
I meant to welcome you yesterday, and got sidetracked at work, then at home. What a lot you have going on! I'm so glad you found us. There will be people here who can help you, but unfortunately, it one of them WON'T be me! I wish I could! A lot of what you're talking about is so out of my realm of knowledge.
I am truly sorry that you're going through such a difficult time with your diagnosis. If your doc has done the biopsy, why do you still think MS? If my thinking is right, the axonal neuropathy means nerve death, right? And then you regained the use of your legs? Is that why you're not buying the neuropathy? I wish I knew more! I'm sorry!
I'm going to bump this back up to the top page so Quix can comment for you.
Feel well and hang tight!
Momzilla*
I meant to welcome you yesterday, and got sidetracked at work, then at home. What a lot you have going on! I'm so glad you found us. There will be people here who can help you, but unfortunately, it one of them WON'T be me! I wish I could! A lot of what you're talking about is so out of my realm of knowledge.
I am truly sorry that you're going through such a difficult time with your diagnosis. If your doc has done the biopsy, why do you still think MS? If my thinking is right, the axonal neuropathy means nerve death, right? And then you regained the use of your legs? Is that why you're not buying the neuropathy? I wish I knew more! I'm sorry!
I'm going to bump this back up to the top page so Quix can comment for you.
Feel well and hang tight!
Momzilla*
Welcome to the Forum CajunCo and I have to say that I am so sorry for all the pain and suffering you have apparently been going through in the recent months. I must let you know that we here on the Forum are not doctors and while we can offer our opinions to you we cannot diagnose any illness. We have one member who is a retired pediatrician and is suffering from MS as well that is able to help us a lot with our questions and her name is Quix.
First of all, is the neurologist you are currently seeing and MS neurologist or a regular neurologist? Has you neurologist done a full in-office neurological examination on you? This exam would take at least 1/2 hour and would enable the neurologist to check your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses. This is a very important examination in the diagnosis of MS.
Has your neurologist done an MRI of your brain? This is also a very important examination which would tell your doctor if there is demyelination in the brain which would show on MRI that there are lesions on your brain which could in turn lead to a diagnosis of MS.
These tests are imperative to rule out MS and there is also the possibility of doing a Lumbar Puncture for the purposes of diagnosis. This test allows the neuro to remove some fluid from your spine for the purpose of studying to see if there is any banding.
CajunCo, I can't say that the MS would be causing the loss of the peripheral vision. Optic Neuritis can be a symptom of the onset of MS but it can take different forms. Was your new eye doctor not able to discern if the loss of vision was from the cataract surgery or not? In my opinion, I would consider returning to the eye dr. to have him test for optic neuritis and then go to the neurologist and have him start with a full neurological exam and take it from there.
As I said before, this is only my opinion and I hope that it will help you to move on to the next step for a diagnosis, not necessarily of MS but whatever the cause is for your problems so that you may move on to a treatment and get some relief.
Please keep in touch with us, we are here 24/7 to answer your questions the best we can. We are here if you want to rant, rave, cry, laugh or just need a shoulder to lean on. We are FULL of cyber hugs and I know that we all need one of those occasionally right?
Lots of Hugs,
Rena705
P.S. there is no such THING as rambling on this site....talk to your heart's content, we will listen!
First of all, is the neurologist you are currently seeing and MS neurologist or a regular neurologist? Has you neurologist done a full in-office neurological examination on you? This exam would take at least 1/2 hour and would enable the neurologist to check your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses. This is a very important examination in the diagnosis of MS.
Has your neurologist done an MRI of your brain? This is also a very important examination which would tell your doctor if there is demyelination in the brain which would show on MRI that there are lesions on your brain which could in turn lead to a diagnosis of MS.
These tests are imperative to rule out MS and there is also the possibility of doing a Lumbar Puncture for the purposes of diagnosis. This test allows the neuro to remove some fluid from your spine for the purpose of studying to see if there is any banding.
CajunCo, I can't say that the MS would be causing the loss of the peripheral vision. Optic Neuritis can be a symptom of the onset of MS but it can take different forms. Was your new eye doctor not able to discern if the loss of vision was from the cataract surgery or not? In my opinion, I would consider returning to the eye dr. to have him test for optic neuritis and then go to the neurologist and have him start with a full neurological exam and take it from there.
As I said before, this is only my opinion and I hope that it will help you to move on to the next step for a diagnosis, not necessarily of MS but whatever the cause is for your problems so that you may move on to a treatment and get some relief.
Please keep in touch with us, we are here 24/7 to answer your questions the best we can. We are here if you want to rant, rave, cry, laugh or just need a shoulder to lean on. We are FULL of cyber hugs and I know that we all need one of those occasionally right?
Lots of Hugs,
Rena705
P.S. there is no such THING as rambling on this site....talk to your heart's content, we will listen!
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