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arkallen

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Mar 8, 2009
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Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
A conversation with my Neurologist this week took an unwelcome turn.

“Any depression?”
No.
“That surprises me.”

I couldn’t keep my game face as I described the increasing joy I find in life; the companionship of many friends; the wonderful, robust lives of my children. But he wasn’t buying it, and our conversation for the next forty minutes did not go well. I have been down this track with other doctors, and it’s not pleasant. There seems to be an expectation that depression accompanies disabling illness; as if melancholy is a more significant symptom than loss of mobility or speech.

“Who brought you here today?”
I came by bus. Three busses actually. I go everywhere by bus, it’s fantastic!
“Why would you do that? Why not call a taxi?”

I was at a loss to explain my rather stubborn insistence on independence. I showed him the numerous modifications I have made to Bugger (my power chair) to enable me to travel further and do more. I could see that this didn’t sit well with him either.

“You’ve lost a lot of voice function.”
Yes (I whispered), but that’s been happening gradually for more than two years.
“You sounded good three months ago.”

In point of fact the last thing we had discussed three months earlier was my fear of voice loss, which he thought unfounded. I explained that when we last spoke I was relying heavily on my voice amplifier. He didn’t know I had such a thing. I showed him how I had built it into Bugger’s armrest, and demonstrated its amazing effect. My Neurologist demonstrated how he too could talk in an almost inaudible voice. I felt as humiliated as I did when another doctor did his own impression of my awkward walk, and then asked me to explain it.

By the end of our appointment he said he could no longer rule out what he calls a “Psychogenic complaint”. (Look it up and you will soon read more recognisable terms such as psychosomatic, hysteria, functional illness, stress disorder, factitious disorder and malingering). But this is my safe doctor! The one who’s got my back! He made the original MND diagnosis, and just months ago he assured me that the dismissive “functional illness” tag – which he described as a “medical abyss”– would not be stuck on my file.

“Would you consider seeing a Psychiatrist?”
I’d rather not. Besides, I’ve already seen two. But I will if you recommend it.
“Psychotherapy could be an option; but only if you want it.”

I remember a Rehab Therapist, caught up in the last ‘functional illness’ ruckus, who was adamant that once I was on the right psychotic drug I would start to improve.

It was so much simpler when it was MND, I said.
“I’m sure it was. 90% of treatment is correct diagnosis”
And you can’t give me anything on paper?
“No.”

Back in the day, when I had Motor Neurone Disease, the medical profession had some idea where to go. The speech therapist would tell me what to expect, and roughly when I might expect it. The Physio and the O.T. would suggest this or that. Centrelink said, “Yep, sign here”. The Social Worker pointed me to all the agencies. The MND association said “These are our resources; we are here to help you”.

Nowadays no one says much. MND? PLS? Psycho-Something? Non-diagnosis has muddied the water. Therapists, not knowing what’s wrong, don’t know what to suggest. The MND association said, “You are no longer our problem”. And this week my Neurologist said, “Come back in nine months”. NINE MONTHS?

I wrote about the singular agony of medical abandonment in D-Day and All in the Mind, and it would be very easy not to write about it again today. After all, three Neurologists have now reached a similar conclusion (I rush to add that two psychiatrists and at least six other neurologists have not) and when I click “Publish” I will be inviting your opinion too.

To not be believed, to endure the inference that I am putting it on, is excruciating. And yet I’m appreciative; even for this. A crisis of faith looms: more than ever before I must know what I believe about myself, and in whom I will believe. To be brought to know oneself is a great gift.

On the way back to town (on the bus!) something strange happened. I was feeling pretty rough, torn asunder in fact, and then I wondered: I am a Christian, so what does God say about all this? What is his diagnosis?

I have hidden you in the shadow of my palm.

These words from Isaiah were in my mind instantly. It gave me an immediate and lasting calmness; the notion that this might be hidden from men, but not from Him. Perhaps He has even blinded their eyes for His own good purpose.


Rejoice!
 
I'm not sure I know what to say to you, but you are in my thoughts and prayers. I cannot imagine what you must feel like when you are treated that way. How horrible. You are a brave and righteous man.
 
doctors never cease to amaze me with their thinking , on many subjects .. if its not in the book it don't exist , if its in the book you must have it ... thier is nothing wrong that you need a phyc.
 
Roderick, your strength and attitude is wonderful and inspiring. Remember there is no book that says what is the "right or wrong" way to cope with this illness. Perhaps the Dr's expectations on what yout attitude or outlook should be is based on their own fears and insecurities. Not everyone is capable of drawing strength and inner fortitude from the Lord, therefore they can not fathom how you are dealing with it. Hopefully one day when they are forced to deal with adversity in their lives they will draw on your example and follow your lead! Stay strong and keep the faith my friend!
 
Speaking to you as a Christian sister Rodrick:

When sin entered into this world, it set in motion a decaying series of events that to this day we all still suffer. However the redemtion of our souls have always been set forth in the mighty plan of God through Jesus. That relationship we have with him as professing and doing christians is the most important thing that matters, regardless of what our bodies are doing. This realm is a short blip on the timeline of eternity. And through Christ we have been redeemed and marked to have a new body that will go on when this one fails completely. That is our hope in him and why we seek after a real true relationship with him. Doing all we can to stand in faith.

The above paragraph is what I believe whole heartidly and is why after 20 years of struggling with an unknown weakness that has progressed to the point it has today, I have not really fully persued the ultimate answer from docs. They scratch their heads and move me along to another specialist, but then I wait years before I go to another specialist, because really in reality of who I am, my life rotates around my relationship to my Lord and how I can serve him and not in how this body is failing. I trust that he knows what he is doing and allowing in my life. He could heal me now or even take me home now. The fact that I find myself loosing ability as the years go (and seems more quickly now or at least its to the point of getting very difficult to do things) has slowed me down in all the ministries I have done over the years and I miss alot of those (like being a soccer coach), but I have also seen a growth in my relationship with God that I never knew he was wanting because I was so busy!

I guess what I am trying to say to you is use this time to strengthen your relationship with God. Because at this point, what the medical profession in all their glory will never give you, is the satisfaction that your spirit really needs. Rodrick, I am so sorry they are putting you through this. Stay true to your faith and ask him whats next for you. He will provide.

Sending you a cyber *HUG*.
 
"La belle indifference" hits a lot of us who by anyone else would be called simply cheerful, persevering types. It may even be appropriate in an acute or short term case... but in the long term, you have to come to peace with what your day is going to be like. Doctors don't live that day to day, though, so they forget that a person who freaked out the first time they had a scary or disabling symptom is probably past the freaking out a year later.

On a specific note, though, depression is a major symptom of upper motor neuron disorders. Not everyone does get depressed, but the incidence rate is so high that "meds for HSP/PLS" list antidepressants right after the anti-spastics.

Keep up the good fight! And don't feel unwelcome.
 
rodrick,i know exactly what you are going through and have been in the same scenario you described with your neuro.

it took 7yrs to get a pls diagnosis for me ,during that time i had numerous tests even genetic and repeated mri's for several years.
my neuro(now retired and need to find a new one)thankfully believed something was wrong from the start and detected clinical weakness on my first neuro exam.
but even so he could not give me a definate pls diagnosis in the early years.
besides seeing him i had to go to a neuro rehab clinic every 3 months,met and instantly disliked the female doctor there.
on one visit she more or less said it was probably somatic,this was in front of a neuro who had just done a neuro exam finding umn dysfunction and hypotonia in my left lower leg...........i could see him squirming.
she asked similar questions as your neuro,i said i managed my illness well and hardly ever went to see my gp.........she said good,with a smirk.
honestly if it was not for the fact i was having a bad day i would have smacked her in the mouth.

at my next appointment i told my neuro what she said and if he thought the same............his answer ......no.
somatic disorders very very very rarely effect motor function in which case it would be caused by extreme psychological trauma.
i did have such a trauma as a child and ended up with manic depression but i got through all that,i am a very strong person .
when i went to the mnd clinic after finally getting a pls diagnosis the neuro there would not second it saying my mri was normal!.
i know he had read what the woman doctor had said and my past records of manic depression.
i told him mnd does not show up on a mri...........he said it does and gave me a funny i know look.
i did send him proof in the post...........no he was not happy.

the fact is roderick if there is something that shows up in a test then they are convinced they dont like to be confronted with what they can't see or dont know.
some neuro symptoms they may be able to put down to somatic like overactive reflexes maybe or fasic's even paralysis...............but atrophy or hypotonia or symptoms like these can not be psychologically manifested.
forgive me but i am not aware of what your neuro examinations found or test results.
its hard believe me i know when you live in neuro limbo land.

yes i did get my pls diagnosis in the end,who knows he may be wrong and on autopsy they find it was something else.
during my 11yrs with mnd i have learnt its is never really about the label................its getting the help and care to keep going.
you need to find another neuro if your not happy but i know that is going to be very hard,they need to disregard everything written by others and start from scratch...........you need to find one willing to do this.

my heart goes out to you roderick,i know how much you must be hurting.
as a christian also i prayed and i knew that god would shine a light on the answer and reveal what was wrong with me.............i pray he will do the same for you.
 
I'm not sure I know what to say to you, but you are in my thoughts and prayers. I cannot imagine what you must feel like when you are treated that way. How horrible. You are a brave and righteous man.

Good heavens! I'm not a righteous man. I had to write about it to get it off my chest and (hopefully) out of my thoughts for a while! I thank you for your thoughts and prayers Missy.
 
Hello Roderick, I've already given you my 2 bits worth of thought, but i want to share with you that my neurologist in my hometown, had not seen enough ALS and was totally intimidated to call it that. I had to go out of state to aa well known ALS Clinic, to see a neurologist who had seen lots os ALS cases, and he did not hesitate for a second to tell me I had ALS. There are all kinds of stories posted here about folks not being able to get a clear diagnosis. Well, its funny, but I'd rather your neuro was right! "Its all in your head"thats a hell of alot better than dragging yourself around in Bugger, and having to use lamenated statements to show the bus driver, rather than just speaking your thoughts and needs! I for one do not think it is all in your head. My als clinic therapist says that it is an extremely rare thing for someone to exhibit somatic problems which start from emotional trauma. If you came to my ALS clinic, and saw an expert, you'd be given a diagnosis.
 
Roderick, as we've talked already about this, and you know how affected I was by it, I won't repeat myself.... but it does, at the end, make me wonder what the outcome is that the Lord makes out of all this. You are indeed hidden in Him.

Another cheerful patient... who had no idea what a danger that can be!
 
"La belle indifference"

I'm pretty sure I heard my Neuro use that term actually, but I dont understand it. Can you dig into it a little more for me Becky?
 
roderick,i was wondering about your symptoms ect.
i think you mentioned a possible pls diagnosis.
i take it you have umn symptoms and signs detected on a neuro exam but no lmn signs?
if it were pls for you to be in a powerchair and losing your voice in a matter of a few years would be super fast progression from most pls'ers.
your progression would indicate umn dominant als which has not yet manifested lmn signs .
 
A little know meaning of the word righteous - fine and genuine. You are a righteous man.
 
Roderick,

Just a thought... what would be wrong with seeing a psychiatrist? I witnessed firsthand the sound of a woman who had completely lost her voice, and the cause for her was psychological. It really made an impression on me. I was in the waiting area of a hospital, waiting for my turn to have an EMG of my vocal cords, and at the time, I felt so badly for that woman (I overheard a conversation between her and her doctor) because, mainly I could empathize with the stigma many WRONGLY attach to a problem not having a physical origin.

Society is not as understanding or empathetic towards those who are dealing with this type of illness, and it is unfortunate; probably stopping many who would seek out help if it were as "acceptable" as being stricken with a physical ailment.

A problem of other than physical origin has NO bearing whatsoever on a person's righteousness, or any other facet of their character. However, even the responses you've received here, while quite supportive, exemplify the negative light that seeking therapy is seen in by the public at large.

Its one thing to have weakness, whether it be of the vocal cords, or an arm or leg, and have the frustration of no answers as to what is causing muscles to weaken. But, if your doctors have not found weakness, nor abnormalities, (please clarify if I've got this wrong, but it seems like you'd said the only thing that has turned up are somewhat brisk reflexes) , but yet, you are experiencing the manifestation of weakness, then, what would be the harm in following their advise?

Even the slightest chance to get back to a normal life, is a gift than many here will never be offered.
 
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Basically, la belle indifference "characterized by a lack of concern and an indifference about a disability" is a term for a patient who is very calm about the physical symptoms themselves. The typical example is a person with a short bout of conversion disorder who shows up at the ER because they can't move their legs, but is only worried about when they'll be able to get home and feed their cat. It means you have the "wrong" emotional reaction, and like I said, in acute cases it might even show something. Unfortunately, in the long term it doesn't really, something medical practice on the whole is only beginning to realize. Being used to a chair a year in is considered well adjusted in a diagnosed person, and yet a sign of mental illness in an undiagnosed person.
 
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