need some advice

[Udaysk]

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?

[JCmcc]

Also,
   These are the very last words that I will ever type on here again. I am moving on. I have lended good comments on here and have truly wanted to help. I seriously mean that-I cared.
   I am tired of being misunderstood and accused. I am over with it. Peace.

[JCmcc]

Hi,
   I am sure that, for those of you who have posted against me, that you think that I am that easy to figure out. I am actually shocked that you would put that much energy into trying to figure me out. It confuses me.
  Anyone can join this site or other sites and answer questions to the best of their ability or lend ideas. Who that person is on the outside is entirely private. As well, it should be completely understood that the only person anyone should even consider taking advice from on here, seriously, is the CCF.
   Are you that closed minded to believe that a person could not have attained their BA and Masters in Physiology/Pscyh-hence moving onto the neuropsych. The person, for personal reasons-takes a break and tries seminary because they truly like to help people and then because they are sick-it does not work out-and the person based on prior academic criteria goes on to finish a Ph.D.
   Sorry to tell you that there are very driven people, who are sick like me. I am

OR THEN:
  There are a few JCs on here. Could it not be possible that their is a co-incidence and that there are more than one people with those letters and those conditions. I think that wasting your energy worrying about whether or not I am a liar is stupid. Don't any of you work or go to school?

   Leave Bob alone. He is helpful.
   Also, some people, when online, use fake MOs to keep secret for certain reasons such as being fired from a job for their illness-who knows. Give it a rest and relax.

[Annie62]

Dr. Bob,

You are welcome.  And thank you for all the time you gave to this forum (and for answering my question).  It was generous of you.  I saw you mentioned several days ago that you were thinking of restarting your practice part-time-I guess your retirement didn't last long-and I'm sure your patients are lucky to continue to have you as their doctor.  I can tell you are a good listener and not dismissive of what people (patients) have to tell you of their symptoms.  If only all doctors could say the same.  I hope you will continue to visit the patient-patient forum here on weekends if you have the time.  I'm sure it will be greatly appreciated by all even if you give just a little bit of your time to this board, sharing your knowledge.  Best wishes for restarting your practice.  

[BobbHilton]

Thanks for your nice words, and I feel so sad that I have only few days to share on this forum (full time , but I will try to visit on the weekends at least) because  in few days I have to restart reviewing old charts/referals again (already booked till July 27!!)
    TJ, I do not deserve  "LOVES BEING A DOCTOR" because I did not do this years ago when I was young.... I did spent every free minute on travelling/vacations...About my posts I always try my best to analyze what the patient say and connect it to how the body works (supply/demad..and what went wrong...the old fasion medicine where a simple x-ray was a great blessing to have..while these days we have the tecnology to analyze things in more details and more accurately but the load of the patient mainly plus other factors limiting us from the full benifits)

     God bless you
     Bob  Hilton

[NURSELPN]

LOL

See I mis-typed too...Bob Hilton,instead of Hinton.

TJ

[NURSELPN]

Annie62,

Comment 32...
(Are you going to tell me that a PA or medical student wouldn't know the difference between a urologist and a neurologist?! Even an LPN would know the difference!)


How did I get involved in this...???...(Even an LPN would know the difference!)???????
I feel like the Geico caveman...LOL
I hate those Geico commericals :-(

I do know the difference between a neurologist & a web med...er, too. LOL

I welcome any knowledge that Bobb Hinton is kind enough to share with us. As a retired neurologist, he not only has knowledge but vast experience. He is a true blessing & I enjoy reading his comments.

I AM AN LPN!!! Would anyone like to dispute that fact.
It's not just a name...It's who I am...I LOVE BEING A NURSE....AND APPARENTLY BOBB HINTON LOVES BEING A DOCTOR!

Blessings, TJ (NURSELPN}

[Margaretx]

Perhaps you're not familiar with the idea that on the internet we're all dogs.  No one who uses a fake or incomplete name should be considered a "retired neurologist" or "seminarian" or "PhD candidate" or anything else for that matter.  The danger--and real physicians know this--is that an unsophisticated person reading here will rely to his detriment on advice from a somewhat knowledgeable person who is acting on very incomplete information (i.e., he hasn't examined the "patient") or a charlatan who purports to have knowledge that he really doesn't have.  IMO, any laypersons who claim to be physicians should be banned from commenting for the same reason that people who tell the judge during voir dire that they are lawyers are thrown off juries.  Laymen will assign the opinions of those people weight out of line with any provable expertise.  We've seen it again and again.

If you want evidence of Hilton's lousy advice, just compare his comment to the real neurlogist's in this thread.

And I have never figured out why some people like to write 500 words when 50 will more efficiently convey the very same thought.

[Annie62]

Margaret:  Oh, for Pete's sake. My post clearly states that it is a response to Hilton's stupid "materialistic world" post.

Me: I know your "Duh!" post was clearly a response to Hilton's "materialistic world" post.  And so was your earlier post where you said "Huh"? (which you later turned to "Duh!") regarding his "materialistic world" post.  

Margaret: Were you imagining some sort of time travel on one of our parts so that my later post could have actually inspired his original one?

Me: No, but whatever you want to write, go ahead and write it.

Margaret:  And I am amused by your implication that my use of the word "duh" so discombobulated you that you became unable to process simple English. Hope you had a fainting couch or smelling salts at the ready.

Me:  Margaret, I tried to be as clear as I could be that your words could be construed in two different ways, but you have a real knack for ignoring whatever I write which you choose not to acknowlege and try to capitalize on the rest.  I'm not sure what your agenda is or if you just like to argue.

You can believe what you want about BobbHilton.  You are free to insult his English language skills (even though I told you he posted that English was his third language) and ridicule his knowledge of neurology.  I really don't care whether you believe he is a retired neurologist or a kid on spring break or a nurse's aid for that matter.  What really bothers me most are your unkind words towards an older man--and it probably bothers me even more so because he is foreign.  I think it is pretty generous of someone (whom I believe to be a physician) who is not American and whose first language is not English to come on an American neurology forum to share his time and knowledge trying to be helpful to others.  And as far as the smelling salts and fainting couch, well there was a word that came to mind when I read that, but I can't seem to recall it now.  I won't even say what it rhymes with.  

[Annie62]

Margaret:

I wrote:  The 'materialistic world" posting on the other forum by BobbHilton clearly was a reference to exactly that-your (and perhaps others') questioning/incredulity that any doctor would choose to donate his time for free when he could be out making money. Why is that so hard for you to believe that a doctor (especially a retired one who has more free time) would choose to do this??

You wrote:  "What in the world are you talking about?  I have never, ever, ever said a word about a doctor "donating his time for free when he could be out making money." Did you read my previous post? I pointed out that that's a straw man--one that both you and Hilton keep repeating. My issue with Hilton has absolutely nothing to do with some perceived belief that doctors won't donate their time to help people (in fact, I know many docs who do just that)."

Yes, I did read your previous post and you asked why no one questioned why a doctor would want to give his time to this group instead of make money.  Your exact words were:  "My "duh" comment referred to the fact that no one here has questioned why a doctor would want to give his time to this group rather than make money.  He's set up a rather weak straw man and not bothered to adddress the true issues."  I don't know how it gets any clearer than that, Margaret.  You DID question his motive in choosing to give his time to this group instead of make money.  Perhaps you think he is bringing up the materialistic world subject as a "straw man" to divert attention from what you see as his handing out of "incorrect diagnoses/cavalier advice," but you DID question why no one on this board questioned his motives in choosing to donate his time on this board instead of make money.  

And I have to say this as well.  Your continued insistence that his interchange of the words neurology and urology (clearly he simply misspoke!) is evidence of his pulling a fast one on us (his not being a retired neurologist-who he says he is) and evidence of his lack of knowledge is quite ridiculous if not disingenous as well.  He had even made mention immediately preceding his misspeaking of cholinergic failure and a neurogenic bladder-which attests to the fact that he thinks the cause is neurologic in nature.  You do acknowledge later that he might be a PA or foreign medical student (at most).  Are you going to tell me that a PA or medical student wouldn't know the difference between a urologist and a neurologist?!  Even an LPN would know the difference!  Yet you will not admit that which is patent--that he simply misspoke.   People misspeak all the time.  *I* do it all the time--and it has nothing to do with what I do or I do not know or "bad language skills" as you mentioned.  Considering this is his third language, I'd say he speaks English pretty damn well; quite frankly, he writes better than many Americans who have English as their first language!

You wrote:  Hilton made it up and you're running with it and it's beginning to tick me off.

What did he "make up?"  He is allowed to say what he thinks-that he finds it sad that the world is such a suspicious/disillusioned place that some in it can't bring themselves to believe that a retired physician would choose to donate his time to helping others without having some ulterior motive or without being an outright fraud and not a physician at all.  I couldn't agree with him more.  

[Annie62]

I don't claim that my reading and comprehension skills of the English language are perfect, but then neither are your writing skills.  I just went back and re-read several times what you wrote, and I now see that what you said can be taken two different ways (not only the way I took it but another way-the way you apparently intended).  Ok, Margaret, I get what you meant and I'm sorry I misunderstood you, but "duh" is a word that I don't use and it passed right over me.  (I assume when you said "duh" that you meant it is a "given" that nobody questions his choosing to volunteer his time, but you actually didn't say "Duh" in your original comment but "Huh?" regarding his reference to a material world and incredulity re: a doctor volunteering his time.)   Your words below could also be seen as an "indictment"; in other words, people SHOULD be questioning why a doctor would want to give his time to this group rather than make money--and that is the way I originally took it.  

{Your words were:  My "duh" comment referred to the fact that no one here has questioned why a doctor would want to give his time to this group rather than make money.}

[Margaretx]

I now understand why you support Hilton.  Your skills at reading and understanding the English language are as poor as his.

Just for the record, I've never questioned why a doc would post here instead of trying to make money.  It's Hilton and Annie's argument and it's a stupid one.

[Annie62]

BobbHilton,

Thank you for the articles you posted above for Udaysk with regards to immune-mediated autonomic neuropathy.  I also intend to check them out, though it's possible I've read them already if they are the Mayo ones regarding experimental AAN induced in rabbits/mice injected with the antibody (the Vernino/Sandroni (sp?) ones).  I was just diagnosed with autonimmune autonomic neuropathy and have been reading everything I can find on it on the internet, but the suggestion about a medical library is a good one which I hadn't thought of, especially since many of the articles I really want to read can't be accessed unless one has subscribed to the neurology journals they're in.  

[Margaretx]

Oh, for Pete's sake.  My post clearly states that it is a response to Hilton's stupid "materialistic world" post.  Were you imagining some sort of time travel on one of our parts so that my later post could have actually inspired his original one?

And I am amused by your implication that my use of the word "duh" so discombobulated you that you became unable to process simple English.  Hope you had a fainting couch or smelling salts at the ready.

[Quixotic1]

You go, girls!  As a medical professional I agree there is one persistently here on the boards who has posted many, many inconsistencies in the four months I've been reading.  He also trumpets far too loudly of his own magnificent atruism and passionate desire to help others, yet jumps down the throat of anyone who challenges him or seemingly breaks "a rule."   But, you're right.  He's entertaining in a "nail-down-the-chalkboard" sort of way.  I do fear, though, that he has given some bad info and advice.  To all who read these boards - take the postings in the thread at your own risk.  Google what they say, see if it really sounds viable, then search further.  People who post in his manner often have an agenda, be it personal (adulation) or ideological.  Who knows?

BTW - The CC Responding Neurologist here offers some amazingly lucid thoughts and recommendations.  I look for new responses daily and am learning a lot.

The retired neurologist is also helpful.  Part of the problem in interpreting his responses is the older terminology he often uses.  Even if he's wrong he offers some interesting points.

[BobbHilton]

Hi,
   I'm not sure if you are still follwing this thread, or you will be able to see my post, but these are few of the recent publications which you could visit any main medical library to get them and learn more about your case

  1-Curr Neurol Neurosci Rep. 2006 Jan;6(1):Page 57-64
Talks about Immune-mediated autonomic neuropathies published by Neurological Institute of New York, 710 West 168th Street, Unit 55, New York, NY 10032, USA
  
    2-Arch Neurol. 2004 Jan;61(1) pages 44-8
Published by the Department of Neurology, Mayo Foundation, Guggenheim 811, 200 First Street SW, Rochester, MN 55905, USA

   3- N Engl J Med. 2000 Sep 21;343(12)  Page 847-55
Talks about autoantibodies to ganglionic acetylcholine receptors (Cholinergic) in autoimmune autonomic neuropathies.published by Department of Neurology, Mayo Clinic, Rochester, Minn 55905, USA.

   God bless
   Bob

[Annie62]

Happy Easter to you, too, Jenny (and to everyone else who celebrates it). Thanks for the input.  I couldn't find any reference to priest but I found where he claimed to be a "good Catholic man" or something like that (nothing wrong in that, of course).

Margaret,

The 'materialistic world" posting on the other forum by BobbHilton clearly was a reference to exactly that-your (and perhaps others') questioning/incredulity  that any doctor would choose to donate his time for free when he could be out making money.  Why is that so hard for you to believe that a doctor (especially a retired one who has more free time) would choose to do this??  

Also, as I said, I am not in the medical field-just a very well-read layperson-but I do not see that he has handed out any bad advice or incorrect diagnoses, and I have read all his postings.  Some of what he says I am not familiar with, but everything that I have heard of/read up on in the medical literature (and it is considerable in the past 10 years since I've had the internet/seeking a dx) is consistent with what he says.  That is why I think he is legitimate.  There is just no way he could know all that he knows otherwise.  And I do not see him handing out diagnoses or advice cavalierly at all, but rather offering suggestions regarding possible diagnoses, suggesting tests that might be done, explaining how the body works, etc.  There is already a disclaimer on this site--so he really doesn't need to make one.  

Quixotic,

Of course I think your comments about JCmcc are right on target.  I never believed he was a medical student (and actually I believed even less he was a neuropsychologist considering his flighty online behavior), but I do know there are some people who seek his "advice/opinion," thinking he is some kind of medical professional, asking him to respond or e-mail them--so I agree that could be consequential if he gives them incorrect information.  It's just hard to believe any one could be that naive (to seek his advice), but I guess it comes down to how familiar you are with a certain field/subject--and he is quasi-educated-which probably makes it worse.  

It appears that you think BobbHilton is legitimate from what you wrote--but you didn't really say one way or the other.  You don't have to answer if you don't want to, but since you are a physician, do you believe BobbHilton is a retired neurologist?  I'm just curious.  I know what I think, but I would like to know what you think since your impression would be more based on facts/your knowledge of medicine.  Thanks.

[Margaretx]

What in the world are you talking about?  You wrote the following:

Margaret,

The 'materialistic world" posting on the other forum by BobbHilton clearly was a reference to exactly that-your (and perhaps others') questioning/incredulity that any doctor would choose to donate his time for free when he could be out making money. Why is that so hard for you to believe that a doctor (especially a retired one who has more free time) would choose to do this?? (end quote)

I have never, ever, ever said a word about a doctor "donating his time for free when he could be out making money."  Did you read my previous post?  I pointed out that that's a straw man--one that both you and Hilton keep repeating.  My issue with Hilton has absolutely nothing to do with some perceived belief that doctors won't donate their time to help people (in fact, I know many docs who do just that).  

Hilton made it up and you're running with it and it's beginning to tick me off.

[Margaretx]

Thanks for your posts.  I completely understand what Hilton was saying re "materialistic world."  My "duh" comment referred to the fact that no one here has questioned why a doctor would want to give his time to this group rather than make money.  He's set up a rather weak straw man and not bothered to adddress the true issues--his bad advice, incorrect "diagnoses," unprofessional behavior and, if your explanation is correct, language skills that are so bad he doesn't know the difference between urology and his purported speciality--neurology.  Just to be clear, the chief reason I think Hilton is not a physician is that doctors' ethical codes (and insurance companies) don't allow them to offer diagnoses or medical advice to people they don't actually examine.  That's why every time you see a reply from an actual physician here, it's filled with all kinds of caveats and "this is not medical advice" language.  IMO, no one truly trained as a physician would be as wreckless with his opinions as Hilton.  My best guess is that he's a foreign medical student.

[Margaretx]

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.

[Annie62]

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.  

[Annie62]

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.  

[flyin2006]

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.

[Jenny Wren]

Annie, I just browsed the archives, it seems that the posts where he posted his name at the end, Jcmcc Phd, has been removed.  Maybe a long time follower will come along and remember this.  I looked under the archives MS and Lyme disease.  Alot of us here at the time asked him alot of questions, we thought he was a doc.  Then I went to a popular lyme disease website, and he was studying to be a priest, he was even encountered by a guardian angel one day while arriving at the seminary, she told him John, you do not have MS, you have lyme disease, LOL.  I'm serious, this is what he said.  

[Annie62]

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...