Aa
need some advice
I am a 25y old male, Asian. I was dx'd with urinary retention about a year back and need to cath 4 times a day to empty my bladder. After about 6 months noticed sensory changes in sexual function, then two months later faced constipation. I have recently started to feel my left leg toes fan out whenever I lift up my feet + tremor in the shin/tibial muscle, can still heel walk though. Both my arms and legs are hyper reflexive 2+ symmetrically. Sometimes I get mild spasms in both my hands (simultaneously), pain behind both eyes on and off without any visual disturbances. I have no cognitive and gait problems.
I have undergone plain T1 and T2W FLAIR MRI of brain and spine at 1.5T multiple times and 3T plain sagittal screening of spine once with no detectable lesions. Had nerve conduction test done for PNS, CSF checked for various common pathogens/STD -all negative. My neurologist says that I don't show any clinical signs of MS as I don't have any upper motor problems and suggests that I undergo neuromodulation/LDDM to correct urine retention and protect kidneys.
I plan to approach a different neuro again. Would Gd contrast make a diff. at 3T for MS lesion visibility? Is it possible to have gross neurological deficts due to MS/infections without showing any lesions on MRI?
I have undergone plain T1 and T2W FLAIR MRI of brain and spine at 1.5T multiple times and 3T plain sagittal screening of spine once with no detectable lesions. Had nerve conduction test done for PNS, CSF checked for various common pathogens/STD -all negative. My neurologist says that I don't show any clinical signs of MS as I don't have any upper motor problems and suggests that I undergo neuromodulation/LDDM to correct urine retention and protect kidneys.
I plan to approach a different neuro again. Would Gd contrast make a diff. at 3T for MS lesion visibility? Is it possible to have gross neurological deficts due to MS/infections without showing any lesions on MRI?
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms that you relate are concerning for a spinal lesion, and I can suggest a few other ways to approach this possible diagnosis. There is another demyelinating disease similar to MS called Devic's disease or NeuroMyelitisOptica (NMO) that is caused by antibodies to a protein called aquaporin 4. I mention this because this disease is demyelinating like MS, but predominantly affects the spinal cord and the optic nerves (it is also more common in asians). That being said, urinary retention is generally not the first presenting symptom of some one with demyelinating disease in the spine (although it is possible). Spinal demyelination generally presents with a 'sensory level' often a band around the body or a line on the body-that underwhich is numb/tingling. It is also common to have weakness, and bowel and bladder changes.
I would suggest that you get an SSEP (somatosensory evoked potential) which will test the 'wiring' in the spinal cord from your foot up to the brain. If a small or hard to see lesion is present in the spine, it will still cause a slow down in the signals along the cord. I would also sugges that you get a repeat MRI with Gadolinium contrast (many lesions may only show up with GAD contrast enhancement). I would also suggest visula evoked potentials (to evaluate for past optic neuritis) and sending a NMO antibody titer to evaluste for the possibility of Devic's disease.
I hope this has been helpful.
The symptoms that you relate are concerning for a spinal lesion, and I can suggest a few other ways to approach this possible diagnosis. There is another demyelinating disease similar to MS called Devic's disease or NeuroMyelitisOptica (NMO) that is caused by antibodies to a protein called aquaporin 4. I mention this because this disease is demyelinating like MS, but predominantly affects the spinal cord and the optic nerves (it is also more common in asians). That being said, urinary retention is generally not the first presenting symptom of some one with demyelinating disease in the spine (although it is possible). Spinal demyelination generally presents with a 'sensory level' often a band around the body or a line on the body-that underwhich is numb/tingling. It is also common to have weakness, and bowel and bladder changes.
I would suggest that you get an SSEP (somatosensory evoked potential) which will test the 'wiring' in the spinal cord from your foot up to the brain. If a small or hard to see lesion is present in the spine, it will still cause a slow down in the signals along the cord. I would also sugges that you get a repeat MRI with Gadolinium contrast (many lesions may only show up with GAD contrast enhancement). I would also suggest visula evoked potentials (to evaluate for past optic neuritis) and sending a NMO antibody titer to evaluste for the possibility of Devic's disease.
I hope this has been helpful.
Dear Friend,
Please be advised that I am not responding to you as a physician and that I am not advising you and that what I write is not meant to be construed as medical advice or a replacement from the forum neurologist, et al.
As you may know; Multiple Sclerosis is almost un-heard-of in Asian people. However, a taxing and similar, if not exactly the same, condition does not escape or spare different races and ethnicities. Lyme disease can present in the exact same way that you have responsibly and perfectly kept note of your health deficits.
Depending upon locale I would suggest finding what is commonly called an "LLMD" or an "LD MD." Both of these mean, Lyme Literate Medical Doctor. You may want to do some of your own research and seek support in the way of questions and answers at www.lymenet.org. You may also want to google the term, "Lyme disease and Multiple Sclerosis," where you will find that Lyme disease is a common but under diagnosed differential diagnosis for "MS." It is nearly impossible to tell the two disease apart. Many people believe that they are in fact-the same thing. This has yet to be determined. In general, the outlook for Lyme that is controlled by anti-biotic therapy is much more postive to that of socalled, "MS." This too could be debated by some.
Your symptoms, however, are variable and non-specific and can be caused my a multitude of conditions, if not, a combinatory effect (many conditions are once). Recent studies also show that lesions are no absolutely necessary to prove "MS."
I hope that I have been helpful.
Good Luck!
JCmcc.
Please be advised that I am not responding to you as a physician and that I am not advising you and that what I write is not meant to be construed as medical advice or a replacement from the forum neurologist, et al.
As you may know; Multiple Sclerosis is almost un-heard-of in Asian people. However, a taxing and similar, if not exactly the same, condition does not escape or spare different races and ethnicities. Lyme disease can present in the exact same way that you have responsibly and perfectly kept note of your health deficits.
Depending upon locale I would suggest finding what is commonly called an "LLMD" or an "LD MD." Both of these mean, Lyme Literate Medical Doctor. You may want to do some of your own research and seek support in the way of questions and answers at www.lymenet.org. You may also want to google the term, "Lyme disease and Multiple Sclerosis," where you will find that Lyme disease is a common but under diagnosed differential diagnosis for "MS." It is nearly impossible to tell the two disease apart. Many people believe that they are in fact-the same thing. This has yet to be determined. In general, the outlook for Lyme that is controlled by anti-biotic therapy is much more postive to that of socalled, "MS." This too could be debated by some.
Your symptoms, however, are variable and non-specific and can be caused my a multitude of conditions, if not, a combinatory effect (many conditions are once). Recent studies also show that lesions are no absolutely necessary to prove "MS."
I hope that I have been helpful.
Good Luck!
JCmcc.
Hi
From your description , you are describing a neurogenic bladder mainly with some sexual change isuues (is it erection issue? or ejaculation?), constipation, and a subjective sensory complaint....Putting them together means or give a possible diagnosis of subacute cholinergic failure which sounds progressive.
The differential diagnosis of this is very broad starting from a simple viral infection (wait and see issue) , rheumatological diseases (Most likly ruled out by your GP/Neurologist) , Neurological (almost excluded ), and few others could be very unlikely in your case especially you don't smoke and no history of loss of wt or loss of appetite..ext
You need to ask your doctor for a chest CT, and a better follow up on the constipation issue
Bob
From your description , you are describing a neurogenic bladder mainly with some sexual change isuues (is it erection issue? or ejaculation?), constipation, and a subjective sensory complaint....Putting them together means or give a possible diagnosis of subacute cholinergic failure which sounds progressive.
The differential diagnosis of this is very broad starting from a simple viral infection (wait and see issue) , rheumatological diseases (Most likly ruled out by your GP/Neurologist) , Neurological (almost excluded ), and few others could be very unlikely in your case especially you don't smoke and no history of loss of wt or loss of appetite..ext
You need to ask your doctor for a chest CT, and a better follow up on the constipation issue
Bob
Holy cow. I've seen some ridiculous poseurs on this forum but these two I-play-a-doctor-on-the-internet chumps top them all. The OP would get better answers by consulting a psychic--and have a heck of a lot more fun in the process. Not to mention be exposed to better syntax and spelling.
Margaret,
Your personal attacks are absurd and disgusting. Some of us are medical students, some of us are simply educated because of our own disease and some us just know our STUFF. E.G. I know a dentist, two retired docs, and a few more professionals/students on here-who care. There is nothing absurd about my post.
Your post offers this person no help. Your comments are totally unkind-and-please, English teacher, where are the mispells? Your in need of help.
Your personal attacks are absurd and disgusting. Some of us are medical students, some of us are simply educated because of our own disease and some us just know our STUFF. E.G. I know a dentist, two retired docs, and a few more professionals/students on here-who care. There is nothing absurd about my post.
Your post offers this person no help. Your comments are totally unkind-and-please, English teacher, where are the mispells? Your in need of help.
Any spelling mistakes on my end are due to finger slips and other problems from M.S.
Heartless..
Heartless..
Your typos are from MS? That's interesting, because on a previous post, you indicated that you do NOT have MS. You need to be a little more careful about cultivating your fake internet idenity a bit more carefully, don't you think?
Talk about heartless.
Talk about heartless.
I have always said that I have MULTIPLE LESIONS IN MY BRAIN AND SPINE BUT THAT THEY DO NOT KNOW IF IT IS LYME OR MS...BUT THAT I HAVE ALL OF THE SYMPTOMS.
THERE IS NOTHING FAKE ABOUT ME.
GET A LIFE.
AND--I HAVE HELPED SO MANY PEOPLE ON HERE, JUST ASK THEM.
FOOL!
THERE IS NOTHING FAKE ABOUT ME.
GET A LIFE.
AND--I HAVE HELPED SO MANY PEOPLE ON HERE, JUST ASK THEM.
FOOL!
Remember,JC thinks he IS the oneand only JC..Just an observation....
I don't know why Margaretx thought "BobbHilton" was a "poseur." He didn't strike me as a medical fraud at all, but genuinely knowledgeable instead. He also had stated that English was not his first language-hence, the spelling errors. This forum should be grateful that there is a retired neurologist who is willing to take a couple hours of his time each day to answer questions and share his knowledge for free (as I assume the CCF doctor also does) when he could be out playing golf-or whatever retired neurologists like to do. And he is actually, humble, too. That's a bonus (considering what most neurologists are :)).
See the real neurologist's comments for the answer to your question. Note that your "expert"--BobbHilton--had ruled out neuro causes.
I noticed the same thing, too, but what came to my mind when I first read the post by "Bob Hilton" is that he misspoke when he said "neurological" causes were ruled out and that he meant to say *urologic* causes instead. The reason I thought that was because immediately above that comment he alluded to a neuogenic bladder and cholinergic failure-both of which are obviously neurologic in origin-in reference to the patient's/poster's urinary retention. Apparently that is not what occurred to you. I do believe he is a retired neurologist because he does strike me as quite knowledgable. I could be wrong but I don't think so. If something shows otherwise then I will rethink that.
IMO, a person who represents himself as a neurologist but gets the terms "urologist" and "neurologist" confused (if this is, in fact, what happened and, if so, what in the heck is the chest CT for?), while at the same time ignoring signs of a spinal lesion and being (apparently) unaware of the huge clue the OP gave him when he identified himself as Asian is not worth much. But I do think that we can both agree on JCmcc's contributions to the forum.
BTW, I see that BobbHilton hasn't been around for a while. I suspect our "retired neurologist" is actually on spring break. If you get my drift.
Perhaps they have been kicked off...JC being the ( as you can see ) most unstable character I have ever seen in these forums. He has a history of this.
Since they're both gone you may be right that they were kicked off. FWIW, I really, really don't think Hilton is a retired neurologist, mainly because I can't believe that anyone who had actually practiced medicine (in the US, anyway) would so cavalierly offer specific medical opinions to a person he had never examined. Sounds more like something a student or maybe a PA would do.
He has been over on the patient-patient forum answering questions. He did say that he practiced medicine overseas (London, I believe).
Hi,
The demelination affects the large myelinated fibers while the autonomic systems are opersted by small almost all non myelinated fibers, plus the spine 1.5 tesla MRI is negative in symptomatic patient for a long time!!
This case is still autonomic dysfunction esp cholinergic fibers, and the possibility of a paraneoplastic disorders esp from SCLC or a variant of GBS
Bob
The demelination affects the large myelinated fibers while the autonomic systems are opersted by small almost all non myelinated fibers, plus the spine 1.5 tesla MRI is negative in symptomatic patient for a long time!!
This case is still autonomic dysfunction esp cholinergic fibers, and the possibility of a paraneoplastic disorders esp from SCLC or a variant of GBS
Bob
LOL. I just took a look at his postings at the other forum and can't believe anyone pays any attention to him at all. He is lamenting the "materialistic world" that would lead us (in this thread) to doubt him. Huh? I suspect he and JC have been told not to post advice here.
Margaret,
I just read BobbHilton's post explaining his response to the poster above, but I also want to say this:
I missed this in your post before: I believe the chest CT was suggested in case the patient has a chest/lung tumor which could be causing a paraneoplastic syndrome that is causing his autonomic dysfunction. Paraneoplastic syndromes can cause autonomic neuropathy-urinary retention, decreased sensation in perineal area--which the poster has. I know. I just underwent a thorough evaluation for autonomic dysfunction at Mayo and a chest x-ray (as well as a paraneoplastic panel) were done in case my autonomic dysfunction was secondary to a lung tumor to rule out a cancer as the cause of my autonomic problems. In fact, 17 years ago when my very first symptoms presented (Horner's syndrome), that is the ONLY test the neurologist did (a chest x-ray), looking for a Pancoast syndrome. So I think I can safely say that is why BobbHilton suggested the chest CT, without putting words in his mouth. Regardless, that is why a chest x-ray or CT of the chest is done when one has autonomic neuropathy-which urinary retention and decreased sensation in perineal area qualify as.
So even though the poster might have a spinal cord lesion/MS/Devic's disease as the cause of his autonomic symptoms in spite of the negative MRI, it is also possible he has either a secondary autonomic neuropathy due to a paraneoplastic syndrome (from lung or other tumor) or even a primary autonomic neuropathy/failure. His advice was not at all off the wall. Even though I am a layperson/non-medical person it makes a lot of sense just from the knowledge I have gathered in my reading and from first-hand experience.
I just read BobbHilton's post explaining his response to the poster above, but I also want to say this:
I missed this in your post before: I believe the chest CT was suggested in case the patient has a chest/lung tumor which could be causing a paraneoplastic syndrome that is causing his autonomic dysfunction. Paraneoplastic syndromes can cause autonomic neuropathy-urinary retention, decreased sensation in perineal area--which the poster has. I know. I just underwent a thorough evaluation for autonomic dysfunction at Mayo and a chest x-ray (as well as a paraneoplastic panel) were done in case my autonomic dysfunction was secondary to a lung tumor to rule out a cancer as the cause of my autonomic problems. In fact, 17 years ago when my very first symptoms presented (Horner's syndrome), that is the ONLY test the neurologist did (a chest x-ray), looking for a Pancoast syndrome. So I think I can safely say that is why BobbHilton suggested the chest CT, without putting words in his mouth. Regardless, that is why a chest x-ray or CT of the chest is done when one has autonomic neuropathy-which urinary retention and decreased sensation in perineal area qualify as.
So even though the poster might have a spinal cord lesion/MS/Devic's disease as the cause of his autonomic symptoms in spite of the negative MRI, it is also possible he has either a secondary autonomic neuropathy due to a paraneoplastic syndrome (from lung or other tumor) or even a primary autonomic neuropathy/failure. His advice was not at all off the wall. Even though I am a layperson/non-medical person it makes a lot of sense just from the knowledge I have gathered in my reading and from first-hand experience.
You must have posted at the exact time I did this morning/our posts crossed paths. Anyway, I just went over and read his post re: materialism and it's pretty clear what he means. Living in such a materialistic world (or in *my* opinion, America in particular) leads a lot of us (myself included at times) to doubt/be suspicious that anyone, especially someone in a high-paying field, would actually choose to volunteer his/her valuable time/specialized knowledge when they could be out making money at their profession or enjoying themselves otherwise. There are actually doctors (though they may be far and few between) who donate their time/see some patients for free not only after retirement but while they are still practicing--because they are good human beings and realize (especially in America) that not everyone has access to health care, especially the poor and uninsured. After some of what I have experienced in the way of doctors (especially the brusque, dismissive and arrogant neurologists I had seen in the past), I say God bless altruistic physicians who are willing to take the time to listen to those who need help, and can't get it otherwise, to point them in the right direction.
Just wanted to say I never felt BobHilton was in any way fake. My only concern was with JCmcc ( read the exchange above between him and another reader.) Most professionals will maintain a professional demeanor, even while their views and/or background are being challenged.
JCMcc is a not in the medical field, he's studying to be a priest, from what I have read, but then again, last year he said he was a PhD, thats how he signed his posts then here. He just has done alot of research about MS and Lyme disease.
Flyin,
You mean you've never been called "FOOL!" by a medical professional before? You must not be seeing the right ones :) Yes, I read all his posts on this thread (and other threads as well).
Well, I was trying not to go there--because he is probably a nice person in real life--but, no, I (like you) never thought he was the things he claimed to be. I'm just not sure why he is doing it. All the same, I hope he doesn't leave the boards because his posts are entertaining...
You mean you've never been called "FOOL!" by a medical professional before? You must not be seeing the right ones :) Yes, I read all his posts on this thread (and other threads as well).
Well, I was trying not to go there--because he is probably a nice person in real life--but, no, I (like you) never thought he was the things he claimed to be. I'm just not sure why he is doing it. All the same, I hope he doesn't leave the boards because his posts are entertaining...
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