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arkallen

Distinguished member
Joined
Mar 8, 2009
Messages
268
Reason
Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
Of all the things I’ve lost, I miss my mind the most.

This week a letter arrived from the Neurologist who last month uttered the incongruous phrase, “It’s too soon to know”. Coming on the tail end of a taxing (but exhilarating!) 30 hour sojourn his letter sucked my remaining breath away. The previous day began with a pair of busses to the train station – then a train trip a couple of hours north – visit our favourite florist (where our daughter used to work) – meet another daughter’s orthodontist – coffee with our son – dinner with a friend – find the hospital in the dark with B4 – attend Sleep(less) Clinic – donate a bed time arterial blood sample (there are any number of less painful ways to shed a little blood) – sleep(less) night – donate a wake up arterial blood sample (there are any number of less painful ways to wake up also) – listen to Dr Blood claiming he had already seen the video of my sleep(less) night on YouTube, then “I wish you well with your paranoia” as he waved good bye – some shopping in the morning – coffee with another friend – back to the florist to pick up a gift for my Favourite Wife – coffee with yet another daughter – train back south – collect FW’s birthday present – and a couple of busses home! Phew.

The 31st hour, though, was the killer. It was a fortunate thing that I was sitting down (on B4) when I opened the letter waiting on my desk. This most recent specialist, like the neurology team that I wrote about four months ago in "D-Day", believes this to be a “functional neurological disorder”. Definition: Functional neurological symptoms are somatic symptoms that superficially resemble those of organic disorders of the nervous system but for which no physical explanation can be found *. Bluntly put: psychosomatic, all in the mind.

It is no small thing to write about this, but honesty insists that I try. I feel vulnerable and embarrassed. Although local medicos quickly dismissed this theory several months ago, this second opinion forces me to look again; but what to do with what I see? I might indignantly scoff at his view; after all, his conclusion is based partly on the fact that I can walk reasonably well backwards but hardly at all forwards (which, incidentally, I didn’t actually know until he alerted me to it. It has proved a very useful technique already in my shed!) But outright denial could be self-deception, and of course it entails resignation to a serious physical condition. Surely the possibility of treatment should be welcome news? But if I embrace this new diagnosis I feel I am surrendering the last strength in which I felt secure: my mind.

I find the idea distressing in the extreme. Unknowing is no longer a matter of not knowing what the specific problem is; now there may be no problem at all, at least not in the physical realm. Could I really be that distorted in my thinking? Could I honestly have sabotaged a career, thrown away our home, scattered my family, sent my Wife (the Favourite!) out to work, lost my licence, confined myself to a wheelchair, etc etc etc, all via some deeply subconscious trauma? Is it possible that something malevolent, something about which I know nothing whatsoever, something quite invisible even to the psychiatrists that I twice encountered, could actually wreak havoc beneath the conscious level of my being? It seems frankly demonic, and I wonder how one could ever be free of its clutches.

Without sounding too self-assured, I think I’m reasonably well adjusted. I guess it’s ultimately for others to say, but I don’t sense in myself a hidden neurosis, deep seated anxiety, depression, or any of the other stresses and distortions from which a functional disorder is thought to stem **. I know little about medicine; neither am I a psychologist or qualified counsellor; but I have spent much of my career helping people deal with life’s great challenges. And so cautiously, respectfully, after taking several days to digest this news, I have decided that I disagree. I think the good doctor – whom I must say I like – is wrong.

I feel abandoned by the medical world. Indeed one support organization (who, disturbingly, knew about this doctor’s opinion a week before I did) have already indicated that I am probably now ineligible for their assistance. Nonetheless, I will listen to every specialist, I will take the advice offered, I will not let a callous of pride or fear insulate me from what I may need to hear. If this two year journey turns out to be a bizarre sidetrack through a psychological wasteland … then so be it. But I don’t think so, I really don’t!

Thankfully, though, the many competing voices around me seem quiet, transient, even fickle in comparison to the voice within me. (Ahhh, that’s tipped it, hasn’t it? Now you know I’m crazy!) There is absolutely nothing that can compare with a sense of peace, no matter what the circumstance. Perhaps providentially it was my turn to preach in our local church on Sunday. Preceding my message was a video segment from a well known speaker who dramatically illustrated the predicament of being pressed between the sleepiness of men and the silence of God. This is Christ’s predicament in the Garden of Gethsemane when his companions abandon him and heaven speaks to him only of the cross. There are seasons when we have neither the reassurance of men nor the explanation of the Almighty, and we must walk alone. These are seasons of ultimate pressure, but they can be seasons of the most rewarding trust.

Rejoice!

(& KBO!)

_________________________________________

* The Academy of Psychosomatic Medicine

** As a rather technical footnote, the following quote from the same source indicates the causative pressures that are thought to perpetuate functional disorder: “The identified potentially perpetuating factors were grouped into seven domains: 1) bereavement (significant bereavements that had occurred since the onset of symptoms); 2) health issues (generalized anxiety about health and symptom-focused anxiety [hypochondriasis], as well as continuing physical problems); 3) financial /social gain (referring to claims for compensation or financial benefits related to the target symptoms and illness-identity, with entrenched dependency); 4) affective disorder (depression and anxiety other than health anxiety); 5) sexual trauma (any sexual trauma, as defined above, occurring since symptom onset); 6) social pressures (including life pressures and caring responsibilities, where these were considered to be having a severe impact); continuing family dysfunction, and social isolation; and 7) other (any other situations causing distress, such as the illness of a close relative, financial problems, family estrangement, traumatic experiences after the onset of symptoms, or concerns about health of family members)”
 
Dear Roderick,
Icant imagine anything more awful then what you have described here. If you hadnt already lost you wind, this would do it! Im new around here so I dont know you story, but are you seeing an ALS specilized neurologist, at a ALS Clinic? I went round and round with surgeons and nuerologists until I got to an ALS Clinic. Then I could trust what they came up with, awful as that was. Anyways I am thinking of you and praying to Jesus in Gesemani on your behalf. YOU ARE NOT ALONE.
Your sister,
Sequoia
 
You are not alone in this.

I have had a strange journey, and even now that they know what genetic mutation caused my upper motor neurons throughout my to quit, they still can't seem to agree on what to call it. I have an HSP type mutation and the complications of HSP, but the quadriplegia and greater weakness of PLS. While I walk my MND journey with all my brothers and sisters here, I seem to be unique. That has caused a lot of trouble over the years.

I was diagnosed with conversion disorder, a somatization psych disorder, by several different ER doctors. To me, this seemed mostly designed to get rid of a difficult case off of their docket. They never recommended any kind of psychological followup, and that made them hard to take seriously. 13 years later, and just a few months before I was diagnosed with HSP (was still a paraplegic), I started wrestling with the possibility seriously. Like you, it shook me to the core. Had I really thrown my life away at the tender age of 14, any chance of a normal adulthood? The thought was ridiculous, and yet I did seem to fit the diagnostic criteria. Even my cheerful attitude counted against me!

I dug in deep and learned a lot about it. There was no real treatment for long term cases... in a few cases, 4-6 years of psych therapy had mildly improved symptoms, or treating a co-occurring psychological disorder. I read about how it looked on pet scans... someone with conversion disorder causing a paralyzed limb could send an identical "move" signal, and they could watch it just come to a dead halt before hitting the spinal cord. This was a real thing, a thing docs don't understand well, but a real and disabling condition. It wasn't a flaw in me, or a choice to give up life, but something taken from me as surely as any organic disease takes things. And the kicker? A full 50% of the time, people with conversion disorder discovered or developed organic neurological disease. To this day, I'm not sure that "functional neuro disorders" aren't just undiscovered and unknown neurological diseases that haven't been named yet.

That spring, I made a decision. I decided that an untreatable disease with radical consequences matters, no matter what it's name is. I wouldn't hide these diagnoses anymore, wouldn't stand on pride, and would join arms with my many friends who suffer from mental disease. I couldn't very well treat them and their disease with respect and deny the possibility that I had my own, that was hypocrisy. It also perpetuated the stigma of mental illness. I started to live more honestly that day, and it was a good day.

I'm not sure if I had conversion disorder back then. I certainly had more myoclonus than I've ever heard of an upper motor neuron disorder causing, and my progressive weakness, spasticity, and pain did put me in a TON of stress each and every day I tried to accomplish something. But I do know that I had UMND then, and I do now. I know that worrying it was really all in my head drove me to try to beat it through overdoing it, and that I tore my hips and back apart in the process. I know that the disability and struggle I experienced, and the love and support of family and friends, it was all just as real whether it came from conversion and UMND or just UMND. I also know that God loves me as whatever kinds of crip I am - sensory, mobility, mental, or all 3!

In my case, time made present things clear, if not past ones. I truly hope that it does for you as well. In the meantime, I beg that you don't push yourself, and that you seek a second opinion both from a neurologist and a neuro-psych or a good psychiatrist. Neuros aren't really qualified to diagnose somatoform disorders by themselves. And whether your impairment stems from physical or mental brain causes, I hope that you will not disregard yourself or others in either struggle. Even if it is somataform, the consequences of disability are just as real either way.

And please don't stop posting, your posts on your experience are an invaluable part of the forum!
 
Dear Roderick
What you are going through is truely horrible. I went to a couple of neurologists that found no reason for my weird gait. It became obvious that my neurologist was thinking about a somatiform illness. He did not need to put it into words, but reading his letters I was getting the point.
I decided that having a curable disorder was better than the alternative, having a progressive illness of some kind. I took my self off to a psychologist that specialised in neurology. He decided very quickly that I did not fit the profile and spent a lot of time telling me to change Neurologists. He had seen hundreds of cases of people with somatiform illnesses and said it was extremely easy to tell if this was the problem. I do not know you personaly but just hearing about your busy life, DOES NOT FIT THE PROFILE. He said they give up work early, tend to stay at home, like using wheelchairs, canes etc and don't find them embarrassing.... many more that I cannot remeber.

My first neurologist had stopped bothering to do anything but get me back every 3 months to talk to me. He was a friend and probably did not know how to tell me what he thought. When I moved to a new Dr he let loose in his letter. I fell to peices. I had been persuaded that my symptoms were real , only to be told that in Black and white this time, they were not.

My new Neurologist examined me and found plenty of UMN signs and said it was not in my head.
I must admit a few times every week I start to doubt that it is real, those thoughts never leave me.

Why don't you find a really good psychologist. There would be nothing to loose and plenty to gain. It would not have worried me which ever way it had turned out. If I had a somatiform illness then I hoped he could help me get well, If not then support me in where I was with my neurological illness.

I am going to print your letter off and give it to my husband to read. He saw a patient yesterday in a wheelchair who had no signs to cause her problems, none at all, so she was diagnosed with a Functional issue. Like you she had seen many dooctors. Its still an illness and a serious and difficult one to deal with

I will be praying for you as it is ahuge mountain to climb either way
Aly
 
Dear Roderick, Even if it is somatic, it doesn't make it any less real. It doesn't mean it's imaginary. And it could mean there is hope that you will get better! But that said, I can imagine very well what you are feeling. I know one of my fears is that it will turn out to be imaginary, and I'll be told my symptoms don't exist. I think this is why we chase diagnoses so strongly.
Roderick, remember your day by day philosophy. It doesn't really matter what's causing it, if it's there. Be at peace. Love, Joan
 
I must admit a few times every week I start to doubt that it is real, those thoughts never leave me.

Aly

I absolutely struggle with this, too! Despite the fact that at this point I can't sit up independently, show dysfunction on a modified barium swallow, have visible optic atrophy, etc... The genetic test shored up my mind a little more than those things, but I still fall into this trap.

My extended family accused me of malingering for years, so that doesn't help at all. New people, strangers see a pretty disabled person, but despite that I worry constantly that they won't believe me that I'm disabled.

What messes the lot of us are. =)
 
Roderick, because we've talked (his blog can be emailed to your in-box every Sunday morning!), you know how concerned I am for you. Aly, so very sorry you also went through this question... or more accurately are still haunted by it.

Beky, I feel gut punched reading your experience. It's so wrenching, and to think that you not only lost so much physically, you also have to be grateful for a genetic test to show that you are afflicted. I wish with all my heart you never had this disease at all, let alone had to destroy your hips as well as back due to trying to keep others happy.

I wonder now how many others have gotten messages like the three of you (and since I was interrupted while writing this an hour ago, have no idea who else may have posted similar diagnoses in the meantime), and have that added burden to carry.

Love you all,
Ann
 
Dear Roderick,
Icant imagine anything more awful then what you have described here. If you hadnt already lost you wind, this would do it! Im new around here so I dont know you story, but are you seeing an ALS specilized neurologist, at a ALS Clinic? I went round and round with surgeons and nuerologists until I got to an ALS Clinic. Then I could trust what they came up with, awful as that was. Anyways I am thinking of you and praying to Jesus in Gesemani on your behalf. YOU ARE NOT ALONE.
Your sister,
Sequoia

Sequoia,
Thank you for your message, and welcome to this forum where you will probably find much support and friendship I think. Yes, the story I related was from an MND clinic, or at least a Neurodegenerative Clinic, with MND being one of their main programmes. Im not sure that there is actually such a thing as an ALS clinic in Australia. Thank you so much for your prayers, I hope that you are doing well!
 
You are not alone in this.

I have had a strange journey....
Beky,

Thank you for posting you moving and honest story; I so appreciated reading it and recognising that this strange journey is a common journey. When you wrote "I started to live more honestly that day, and it was a good day" I understood, I think, just what you meant. One of the reasons I wrote my essay was because I was determined not to hide away with this news. If it turns out to be a psychological dissorder, then that's what it is and I will have to face that truth just as I have had to face using mobility aids and so on.

There is real courage in your words, and I have read them through severall times. Thanks again!
 
Dear Roderick
What you are going through is truely horrible. I went to a couple of neurologists that found no reason for my weird gait. It became obvious that my neurologist was thinking about a somatiform illness. He did not need to put it into words, but reading his letters I was getting the point.
I decided that having a curable disorder was better than the alternative, having a progressive illness of some kind. I took my self off to a psychologist that specialised in neurology. He decided very quickly that I did not fit the profile and spent a lot of time telling me to change Neurologists. He had seen hundreds of cases of people with somatiform illnesses and said it was extremely easy to tell if this was the problem. I do not know you personaly but just hearing about your busy life, DOES NOT FIT THE PROFILE. He said they give up work early, tend to stay at home, like using wheelchairs, canes etc and don't find them embarrassing.... many more that I cannot remeber.

My first neurologist had stopped bothering to do anything but get me back every 3 months to talk to me. He was a friend and probably did not know how to tell me what he thought. When I moved to a new Dr he let loose in his letter. I fell to peices. I had been persuaded that my symptoms were real , only to be told that in Black and white this time, they were not.

My new Neurologist examined me and found plenty of UMN signs and said it was not in my head.
I must admit a few times every week I start to doubt that it is real, those thoughts never leave me.

Why don't you find a really good psychologist. There would be nothing to loose and plenty to gain. It would not have worried me which ever way it had turned out. If I had a somatiform illness then I hoped he could help me get well, If not then support me in where I was with my neurological illness.

I am going to print your letter off and give it to my husband to read. He saw a patient yesterday in a wheelchair who had no signs to cause her problems, none at all, so she was diagnosed with a Functional issue. Like you she had seen many dooctors. Its still an illness and a serious and difficult one to deal with

I will be praying for you as it is ahuge mountain to climb either way
Aly

Hello Aly,
I liked reading your story - gruelling though it is. Thank you for your honesty, it's encourageing to know again that we don't go through these strange experiences alone. I remember a Neurologist who actually impersonated my awkward gait and said he couldnt understand it, and asked me to explain it! I found it so embarrasing.

I'm not finding it too horrible now; I have a confidence, contentment, security in the future that often surprises me. I have thought about following up with a psychiatrist or psychologist as you suggested; but for the present I'm not going to go chasing more opinions. Ill wait and see what the neurologists suggest if they actually do get in touch with me as they have indicated they will; but in the mean time there is so much life to be lived: I just dont want to waste a moment more on the damned diagnosis merrygoround!

By the way, I have seen Matthew Kiernan a couple of times. He's certainly a kind fellow, he was the first one to speculate on PLS. I live in a different state now, so I dont know that I can see him again.

KBO!
 
Partial Quote from arkallen: This is Christ’s predicament in the Garden of Gethsemane when his companions abandon him and heaven speaks to him only of the cross. There are seasons when we have neither the reassurance of men nor the explanation of the Almighty, and we must walk alone. These are seasons of ultimate pressure, but they can be seasons of the most rewarding trust.

Roderick,
I commend you in your walk through this valley alone and that your faith and confidence in the Lord is strong by the power of His might. It is not easy when the Lord hides His face for a season, but behind the clouds, the sun is shining. He is faithful and will carry you through this.

Judy
 
Have you considered that you alone are sane, and that all the medical professionals around you are crazy?

That is more likely the case.:lol:

Prayers for ya. Just laugh a little at the insanity of others.
 
hi roderick . . Just read your initial post and the subsequent replies . . Unlike beky aly and the other wonderful people that replied i know pretty much zilch about somatic conditions /illness . . But if there are positive to take . -eg possible therapy to halt things ? Maybe the chance to plan for the long term ? Then i for one would be soo happy for you . . But i sense your bewilderment as to why it happened. . Even guilt? Well if i know one thing its nothin to do with your strength of mind. . Your intelligence and astute mind jumps off the screen when i read your posts . . I am sure every user of this excellent forum agrees that your entries are essential reading. . my point is look to the positive my friend and not the why? and how ? . . and you will come through. . As always i willing the best for you . . God bless . . Alex
 
Roderick, I agree with "alex scared" when he said:

"Your intelligence and astute mind jumps off the screen when i read your posts . . I am sure every user of this excellent forum agrees that your entries are essential reading."

Judy
 
arkallen... this reminds me of what has happened to my PALS (my husband) He was diagnosed almost 3 yrs ago with ALS at the VA hospital clinic. As soon as he applied for disability, they began saying he needed to be
further tested. After 18 months of living with ALS and telling family and friends we were prepared for anything and it was all bad, the VA suggested to us that since he hasn't died yet or had leaps of progression, he should be tested for the following: sexually transmitted disease, alcoholism, and exposure
to asbestos. Well, he was in the Navy many years ago, and had one monogamous relationship in his 30's until me after age 59. If he had a STD I think we'd know it by now. When they were told that he never even
has a social drink nor has he even had one since his Navy days, they suggested to me.... How would I know if he was a closet drinker! They would not believe our word, but HAD to have him tested. Of course he came out squeaky clean as we knew he would. Then they asked about all the places he ever lived to find
out about the asbestos exposure and tested for that... clean as well. Then they had to do another MRI to prove no tumors or cancers or other growths. Now that that is all over, they say they don't know what he's
got after all. We know, and we are the only ones I guess, that he has ALS with so far slow progression. We believe the first specialist he had in the beginning, who has since retired. Meanwhile he has only 10% disability for his type II diabetes. It's a crazy world. My best to you, and all those out there who deal with idiotic so-called specialits.
 
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