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arkallen

Distinguished member
Joined
Mar 8, 2009
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268
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Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
“What we can tell you with confidence” the calm, dignified and heretofore quite likeable Professor intoned, “is it that it’s not nasty, and it’s not progressive.”

“Coughcoughbullsh*tcough” I said. Inwardly at least.

I found his summary utterly ridiculous, and stealing a glance at some of the doctors and students crowding my room I suspect some of them felt likewise.

Gathering my courage in the presence of the Professor and his entourage (isn’t it interesting how they surround themselves with a court of underlings to preserve dignity in moments of erudite silliness?) I typed:

I don’t understand what you mean when you say it’s not progressive. When I was here last year I was able to speak, and push myself around in a manual wheel chair. (In point of fact I had just returned from a superb tour of the Gibson Desert).

“Yes, I have no explanation for that”

“Coughcoughbullsh*tcough” I said. Inwardly at least.

“Anything else? …(nanosecond pause)… Good then.”

And he was gone. A flurry of minions made a rather startled path for his urgent retreat, suggesting the parting of the red sea. Thankfully one observant and compassionate nurse closed the door behind the gaggle, and remained at my side for the next half hour or so. Like many nurses she had a much more sensitive and infinitely more welcome approach, and some actual medical wisdom to share. Thank God for her.


Every patient is given two ID wrist bands, just in case they rip you in half. But can they put you back together again?
Later in the day I asked to see what the doctors had written up in my hospital notes. A single entry: Explained to patient that disease is not expected to progress.

What absolute crap.

It just defies all logic that a seven day week can be spent in tests and interviews and leave-your-dignity-at-the-door hospital showers only to end with such brief, flimsy nonsense. I can only conclude that the words Nasty and Progressive are not the English words I thought I recognised. They must be part of a medical vocabulary, understood only by the nine-year-trained elite. It’s a wonder they weren’t in Latin.

One of my objectives on this trip was to garner advice; and so I made a point of asking doctors and therapists to please give me some notion of what to expect next, and what practical steps they could reccomend. Apparantly I am to expect the deterioration to halt round about now, on the train home tonight perhaps? Other than a reworking of a pain-medication schedule I will leave here with nothing at all, not a notion, not a suggestion nor a word of advice. I guess that medically this all makes perfect sense, to me it is just absurd.

But I don’t want to sound utterly dismissive of the hospital team. The main focus of this visit seemed to be Neuropsychological and Pshchiatric assesment; and happily, wonderfully, the completley unfounded idea that my physical problems are psychogenic has been laid to rest. I hope forever. It was interseting to hear the hospital’s head of Psychiatry say, after reviewing my file from last year, that her department had always dissagreed with Neurology about this. And I did meet some wonderful people. Kind nurses, excellent cooks, fastidious cleaners, skilled and compassionate doctors, a hilariously funny consultant psychiatrist, and one extreeeeeemly ill-tempered OT who made it abundantly clear from her first breath that the last thing she intended to do in her ten minute visit was help.

And now I am homeward bound, on the late night rattler, longing for my Favourite Wife’s smile, Little One’s hugs, a thorough inspection of progress on The Coliseum (our new accessible bathroom, right now under construction). And the future? Who knows.
 
Hope you are writing a book! What frustration you and your wife must be going through!
 
What a joke. How can they be so dismissive?
 
Seriously? Unbelievable!..So very sorry there are still no answers for you. Hugs
 
Dear RoderichK, I feel for you, but time has come to accept that you have nothing neurologicalyl wrong, not on clinical examination or psychological examination. The good thing is you should be able to get better with assistance. Many experts can find No reason for your experience .its time to get help moving on.their must be experts to help you,
 
Dear RoderichK, I feel for you, but time has come to accept that you have nothing neurologicalyl wrong, not on clinical examination or psychological examination. The good thing is you should be able to get better with assistance. Many experts can find No reason for your experience .its time to get help moving on.their must be experts to help you,

Well, no Aly, the hospital Neurologists were saying that it is Neurological, rather than psychological. They just have no name for it. Apparently there are clinical symptoms, but of what?

I had an interesting review with my GP today; who shed some light on the terms "Not nasty", and "Not Progressive". She viewed it all as very good news, saying that Not Nasty means that its not something involving permanent nerve deterioration. And Not Progressive she took to be his opinion that whatever it is won't deteriorate to complete or permanent loss of function. So, perhaps there is more in the Professors comment than I had thought.
 
roderick,they would not dismiss you if they thought or you had pathological evidence that your problems were due to a neurological desease.
you dont have any clinical weakness or pathological evidence to explain why you can not walk and as for your voice theres no reason why you can not talk.
as far as i am aware loss of voice would be a result of atrophy of the vocal cords which you dont have,usually along with this as i have learn't from my bulbar pals is that you would be having problems with swallowing also.
if your loss of voice is not caused by permenant nerve degeneration then theres no reason why you lost it and can not recover it.

i do feel for you and it must be so hard to except .
during my years of limbo land i had to go to a neuro rehab clinic,there you see someone who just discusses your meds and problems ect.
when i first went i had an exstensive neuro exam from a neuro who was the understudy neuro of mine.
he found all the umn signs,clinical weakness and hypotonia in my left leg.
afterwards i went into a room to see the neuro rehab doctor who proceeded to in no uncertain terms tell me it was all in my head..........yes,at the time i was angry and upset.
i went home and had a good inward look at myself ,i thought if it was all in my head i could think myself better,i wanted it to be so i could get better.
she mentioned that these things can be caused by some trauma in your past,i was sexually abused as a small child and later in my teens and early twenties i had very severe manic depression resulting in attempted suicides..........some of this would be in my hospital records and i presume this women read them.
emotionally i am a very strong person,i have had to be but i had to question myself that my past may be the cause.
its hard for us mere mortals to get our head around the fact that conversion disorder can really leave you as paralysed as a real illness,its a rare phenomanon (sp)but it does happen.
at my next appointment i told my neuro what this women said and asked him straight out if i felt it was a conversion disorder.
he said no,the reason being theres pathological and clinical evidence of a desease process and if he thought there was nothing wrong he would not keep seeing me.

honestly,you need to look within yourself..........its easy to fake a positive response and give all the right answers to a psychologist.
what gets me about you(leaving the can not talk/walk stuff)is that your attitude does not fit someone who is so disabled with no diagnosis or cause.
you claim your arms get heavy,typing is tiring yet you can happily make all kinds of gadgets with power tools.
something that struck me as very odd behaviour was that the other week you posted a comment on the memorial forum for someone .........a brief sorry for your loss but then several lines of how sunny and great the weather was........thats not normal.
no one can help you untill you learn to help yourself.
again,i do feel bad for you and hope in time you do get better.
 
Roderick, I know that recently, you had no clinical signs that would cause you not to walk, it's a weird world, but if that's changed and you now have debilitating weakness, then gosh is that a good thing? I am not sure. I just know how much you have yearned for answers to the mystery.
the way I read your doctors comments and your anecdotes is actually that they still have no organic reason for your deterioration and symptoms. That's why they said it is nothing nasty, and not progressive, when you are clearly living with the obviously nasty and progressive issue.
Believe me a neurologist sees a condition as nasty if it takes away a persons quality of life. I think your comments were maybe a bit harsh and sarcastic. The professor sounds more like he is trying to reassure you that you can get better.
It's not hard to line a clinical examination result , with a persons degree of disability. A wheelchair bound person with a neurological condition will have a ton of signs, severe weakness, spastic catches, clonus, atrophy, ( some or all of).
With mild signs you would certainly still be up and around, with mild disability.
I could go on and on, but you have heard it all before. I just think that it's time to try and get better and I'd it's caused by a conversion disorder, then you have hope, where there is little hope for some.
I certainly would tirelessly persue that path. There is no shame in it. I did my darndest to get a diagnosis of a conversion disorder. Just didn't work that way.
It's difficult to treat I believe, but treatable.
As I said, if in the last few months you now have severe weakness, can't lift your legs off the bed etc, then ok. I stand corrected and I am sorry. But your recent posts just haven't read that way.
I care about you and feel your frustration, it sucks big time.
Aly
 
Roderick how absolutely frustrating and quite frankly cold and calloused! To spend a week in the hospital only to be told they have no idea what is wrong but that it is not progressive. First of all as you said it is obviously progressive and second of all if they can not diagnose you how can they begin to say with any medical certainty that it is not progressive?

I feel for you my friend! I know that this is a stupid question, but I will ask anyway, I assume that you have visited other hospitals and seeked out the opinion of other specialists. I only ask because I cannot fathom the fact that with all of your symtoms they can give you any type of diagnosis or referral to a specialists? The unknown is often the worse of all situations. I know that often we treat Dr's like they know everything but the truth is often they are just detectives eliminating potential diagnosis based on the clues from tests and exams etc. However to leave you with no clues or at least no path to follow is honestly immoral in my book.

On another note how is the coliseum coming along?

I hope you find the answers you deserve my friend.

I will keep you in my prayers.
 
TedH5,

Your remarks about what the doctors have told arkallen are as cold and callous as the ones you are protesting. Unless you have some kind of divine revelation telling you what is wrong with arkallen -- and if you do, I'm sure that arkallen would appreciate your passing that information along -- then you are condemning people with far less evidence about them than they have about arkallen. They've been observing him for the past week and have access to his medical records and test results over the past couple of years with which to formulate their opinion about his condition. What do you base your opinions about their competence and character upon? Would it have pleased you more if they had given him a more specific answer that wasn't completely supported by the facts and was refuted later by his actual condition and progression? I believe that something similar happened a couple of years ago and that's what brought arkallen to our merry little band in the first place.

Condemning his doctors is not particularly constructive or helpful for arkallen. They've observed, tested, and reported what they have found. Isn't that their job? If they are doing their job -- and no one (including arkallen) has presented any evidence to indicate that they aren't -- why the harsh words? They can't report what they don't find and they found no evidence of the well-known progressive neurological disorders. That is positive news, despite arkallen's having missed it the first time around in his frustration with not getting a definite answer.

Arkallen certainly has a right to vent his frustration with his own situation and he's done so here. I suspect, however, as time passes, he'll regret the intemperance of some of those remarks. At any rate, it serves no purpose for any of us to reinforce or affirm poorly-considered, ill-chosen, and soon-regretted remarks made in a period of emotional distress. Expressions of sympathy are certainly appropriate (and I do sympathize with your frustration, arkallen -- not knowing does suck). Offering support and assistance in learning to cope with his uncertainty -- also appropriate. Demeaning his doctors because they they are honest enough to admit that they don't know -- not appropriate, at least in my opinion. YMMV.

We are very fond of talking about "diagnoses of elimination" around here. That's what we have here -- the well-known and fearsome possibilities have been eliminated, for now. Wouldn't it be more productive for us to encourage arkallen to rejoice that many of the worst options are off the table at present, rather than to mutter unpleasant things about the folks that brought him that news because they couldn't bring him more specific news?

Just a thought.
 
I thing that perhaps you took my remarks the wrong way. My point just as Roderick said coughcoughbullsh*t is that it was cold and calloused to not just say it is not progressive when it obviously is and to not at least try and point him in the right direction. If he is going to spend a week in the hospital and the only thing written in his file is that whatever is wrong is not progressive when as Roderick pointed out that it is in my mind is cold and calloused. I would never want to offend Roderick we have had several offline conversations and I consider him a friend.

I feel for him given the fact that he invested so much time in trying to get answers and they give him in my mind and Rodericks mind apparently given his coughbullsh*t remarks above, are insensitive. For someonto be to have progressed as far as he has and not be given a diagnosis or to be just dismissed as they did with him is wrong. I feel for him and expressed to Roderick as much.

Elimination would be great but it sounds to me that based on his symptoms we should be well past that. If they told him he does not have ALS and they had sound reason to tell him that he would not progress then I would celebrate. However when you read all of Rodericks posts and realize how much has been taken away from him with no answers and bs lines from Dr's then I find that not encouraging at all, as you suggested it is. I do not wish upon him or anyone else for that matter to be diagnosed with ALS but I do know that in my own experience that for me that the time period where the Dr's were 90% sure it was ALS to 100% sure were tough. To me not knowing and not being sure and to have all of the what if's in my ind is torturous.

If I were confined to a wheel chair had trouble speaking and needed a coliseum to be specially built for me and a Dr blew me off the way his Dr apparently blew him off I think fiddlesticks would be about the nicest thing I came up with.

Trfogey I think you know me well enough to know I always attempt to find the positive side of the story and do my best to remain hopeful and upbeat. I pray for nothing but the best for everyone on the site which obviously includes Roderick, you and everyone else. So I am a little suprised you interperted my remarks as negative. Best to you.
 
Yes folks, I agree that my remarks about the Professor are intemperate! But; I do think that doctors - busy though they are - owe more to their patients than these rushed five or ten minute interviews in which they say so little.

I don't want to debate the whole Inorganic / Functional thing once again here. When people occasionally tell me I can get better if I want to I find it quite traumatic. I was immensley relieved that this past week's significant psychological and psychiatric assesments left no doubt in professional minds that my issues are of an organic, if unknown, nature. That was the conclusion of both the psychiatry and neurology teams. As to why I can still work in my shed for an hour or two with my hands, but at other times of day (now for example) find myself resorting to 'Dasher' to type because of pain and dexterity problems; well I have no answer at all to that. If doctors cant explain my speaking and swallowing difficulties, my reflexes or my immobility; then I'm sure I can't! As for my frame of mind not befitting my dissability, I don't feel I need to defend that either.

I often don't know if I belong on this forum; it's now a year or more since doctors last mentioned MND as a future possiblity; and more than two years since that was the actuall diagnosis that I recieved. But it is one of the only places that I find practical information on how to live under these difficult physical circumstances. I post my journey here partly because I feel a loyalty to friends I have made in this strange 'club', and partly because I think that there are other people who struggle through the same strange terrain, and I guess I hope to help in some way.

God's Peace to you all!
 
I took your remarks as negative, TedH5, because there isn't anything positive about calling someone cold and calloused unless you are using those words to substitute for something worse. And then, those terms aren't positive -- simply less negative than the others.

And you know as well as I do that doctors use words differently than normal people do when they are describing medical conditions. Progression, in a medical sense, refers to a process that has a degree of regularity. The changes that happen due to the progression of the process occur in a consistent and predictable way. For example, typical ALS progression is distal to proximal -- fingers before wrists, ankles before knees and hips, tongue and speech before throat and swallowing. The nature of the progression is what helps to identify the process.

From what I've read of Roderick's journey, there isn't any identifiable "progression" that the doctors seem to be able to find. Certain body parts stop working, yet months later, neighboring body parts are still functioning normally. Olly mentioned the bulbar inconsistencies. Other folks have mentioned other oddnesses in what afflictions Roderick describes and how those afflictions begin and develop for him. The apparent randomness of onset and progression (or lack thereof) points to multiple causes, rather than a single cause. Or, unfortunately, to someone who is attempting to feign a condition that they do not fully understand, which is probably the reason for all the psychological re-evaluation that Roderick's been through the past few months. It's a simpler explanation for his presentation than multiple neurogenic disorders occurring simultaneously and far more probable than a heretofore unknown new neuromuscular disorder. Therefore, it was a possibility that needed to be explored, which I suspect was the point of what went on for the past week. If Roderick were actively feigning his condition, he'd likely make enough mistakes during a week of close observation to give himself away.

Hopefully, that notion is now laid to rest.

Ted, you've read enough of my writings here to know that I just call them like I see them. From what Roderick has written about his condition here, I see nothing that makes me suspicious of anybody in this story. For all any of us know, Roderick's case may very well be the subject of an important medical journal article some day -- a new neurological disorder or a case study on how to tackle a tough diagnostic problem. Not much comfort in that for him, I'm sure. All I'm suggesting is that we keep our powder dry and not poison the atmosphere any further.

All the best to you as well.
 
FIDLESTICKS.... Roderick you are the sanest and finest person I have ever met....you have great integrity and honesty, and deserve to be treated with respect. Do not, I beg you leave this Forum...there are a few who are constantly negative on all their posts, as if their opinion were facts. You alone know what you have been through and I repeat here your words:

" I was immensley relieved that this past week's significant psychological and psychiatric assesments left no doubt in professional minds that my issues are of an organic, if unknown, nature. That was the conclusion of both the psychiatry and neurology teams."

This says something that no one should ignore! You definately have some kind of MND.....do not doubt yourself or feel you have to defend yourself. You have courage and integrity, and I stand behind you 100% !
 
Roderick you are part of the family. I think many of us would miss you if you left--already too many loses--we don't need another one.
Laurel
 
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