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Kristina1

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PALS
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US
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MA
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Opus your most recent response is incredibly offensive given it's directed at people who actually have this horrible disease. You are not being remotely objective. You have decided on your diagnosis ahead of time, and set out to find any and all cherry picked material that will agree with you. My very first symptom was muscle cramping, my second was weakness and loss of function. But it would be ridiculous for someone with muscle cramps to jump to the idea that they have ALS. And no mentally healthy person does. Like how when you get a headache you don't assume it's a brain tumor. You go with much more likely possibilities to explain the symptoms. Anytime someone comes on here with only muscle twitching, or a few odd nonspecific symptoms like yours, and is convinced they have ALS that immediately tells me that 99.99999% they don't have it. Because ALS is not something you ever imagine when you actually end of having it. Like cancer, it never crosses your mind until late enough in the process that you either have those hallmark symptoms or you have doctors really concerned and putting serious diagnoses on the table.

If you think you have it this early, then you don't have it. I don't have a medical journal article to back that statement up, but I think we all know it's true. Please stop wishing for a disease that's ruining my life. It's insulting.
 

Bestfriends14

Very helpful member
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AB
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CALGARY
Opus,

Your post lacks sympathy and content that contains proper, well-rounded information. You come to a forum of terminally ill people and basically say that the opinion of the folks here is somewhat ill informed compared to that of the ever prestigious Wikipedia. Seriously? That's really nervy and insensitive. Perhaps one of the most insensitive threads I've read on this forum. Shame on you.
 

opusensemble

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Hi Kristina,

I am extremely sorry for how my words made you feel. I was aware I could eventually sound offensive to the ones dealing with the disease but I still dared to post it willing to (in case someone recognized the logic process I attempted to explain) eventually advance the completeness of the sticky guidelines on how the illness could manifest itself initially.

Of course, not having had a formal diagnosis myself, I am in the wrong position to suggest such a thing.

Please forgive me if my words sounded disrespectful, offensive, insulting, in what was nothing more than my attempt of making sense of descriptions of initial manifestations that didn't fully intersect and leave room for ambiguity and misinterpretation.

For instance. If "muscle stiffness" and "muscle twiching" were not listed extensively throughout the cyberspace as initial ALS signs I wouldn't have even dared to register in this special and ultra sensitive forum.

I had increasing debilitating stiffness from 2018.01 to 2018.05 and despite having quit my job and halted a long time entrepreneur project where I managed other people, to become bedridden feeling handicapped, in that process I never raised the possibility that the stiffness I felt conquering progressively more and more of my limbs towards my torso, could be ALS.

It took me start twiching all over below my neck and the fact that the stiffness became increasingly paralysing in such an insidious way over the last 5 months, to make me freak out and go on a diagnostic exclusion spree that left me converging to the ALS possibility.

I went to a lab this summer and spent a little fortune testing myself from A to Z after talking with one of the lab doctors that helped me selecting which markers I could test myself for.

She thought I was crazy to do such a brute force panel, but she also saw how desperate I was for answers that my PCPs and first neurologist appointments were not providing by requesting sleep studies and EEGs. I had to ask specifically for MRIs and blood work to be done to try to speed the diagnosis a bit of whatever I have.

Whatever it is, it came into my life without a warning, it had a progressive and insidious onset and it has been destroying me, affecting everyone around me. I orbited inevitably to this forum after being told by some MSers that the fact that I don't have sensory symptoms and have the twiches and the stiffness (not the numbness and the pins and needles MSers usually have) made it much more likely that ALS could be on the table, since all my exams were clean.

I was forced to put 1 + 1 together after 10 months of insidious worsening of symptoms, specially over the last weeks when I started noticing some difficulties breathing, together with a massive increase of twiching all over my body. The stiffness is so insidious, prolonged and progressive that my instinct tells me I am dealing with a very serious condition.

That's why I dared calling it undiagnosed ALS, despite having true horror for the illness. I am truly sorry if saying such thing hurt your
or any other PALS feelings.

I am in desbelief myself because for such a long period I tried to find other explanations for such an insane deterioration in my motor and muscle wellbeing that doesn't respond to any lifestyle changes even with me focusing exclusively on trying to recover. My life has stopped because of these symptoms of stiffness, just like it stopped for many of you when you were diagnosed. It effectively disabled me from working by making my movements very stiff.

I consider myself a very resilient person. I went through incredible hardships all my life since young child, and even my participation in this forum was delayed and re-considered for a long time, for both the reasons of opting to believe I was dealing with one of many possible conditions but not ALS, and also for the fear I felt of possibly insulting PALS if I presented my case in the forum, after I have seen so many threads of clearly simple pure hypochondriac cases from DIHALSers panicking about wrinkles-like dents, micro-asymmetries, time isolated BFS, etc.

After countless FB groups, extensive research and several doctors and exams I gravitated towards here in shock and disbelief, with a fair good deal of certainty that I qualified at least for a in depth analysis of my symptoms.

Please forgive if I sounded innapropriate, but in practical terms i, like many of you do, also try to communicate with my limbs and they seem to offer incredible resistance to my orders.

It's certainly an exaggeration to call it full paralysis but it's way too debilitating to think it's not a serious neuromuscular condition.

I wish I could relate to the symptoms of any other alternative condition and you can be sure I wouldn't have dared risking hurting your feelings. I have profound respect for all you people and your families. And your altruism in interacting with others and even offering your opinions to DIHALSers is one of the most humbling experiences I ever witnessed.

And I understand that this sort of situation can become a minefield. I have spent a considerable amount of time reading through many people cases in this forum and realized how common this sort of situation is. As if there was a dissociation between DIHALSers and PALS in the absence of very obvious visible hallmarks.

I am sorry if I said something I shouldn't. Or if I projected the wrong tone or sounded like I was having an attitude or being disrespectful. I would define myself as scared and beyond the state of analysis paralysis, afflicted by debilitating symptoms that my determination to ignore doesn't seem to have any effect upon, anymore.

I certainly would be humbled by something that could prove me wrong. I am truly sorry for any words that have sounded insulting . If anything I wanted to offer you all life, not use the life you have. I feel in pain and guilty enough for everything.

I will move forward with the EMG despite my diffifulties leaving the bed and the house, in efforts to stay objective and appreciation for your words.

Please accept my sincerest apologies for anything.

Warm Regards
Joao
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,221
Reason
DX UMND/PLS
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06/2015
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CA
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Mod note: Thread closed.

Opus, do not open another unless you have emg results in your hand and it is clearly noted in those results that there is an indication for MND.
 
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