My undiagnosed story

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PassengerXIII

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Hello,

I’m male 40yo and below is my unusual story.

I’m not looking for any diagnosis here but some kind of advices if it’s possible.

Until 2010 I was a very happy person, full of life and always doing sports.
In 2010, at the age of 28, almost the whole year was very stressful with some personal problems and professional rehabilitation issues.

During the summer I worked in a greenhouse.
At these days I felt an inexplicable fatigue of the muscles of the trunk, legs and arms.

Unfortunately, later in that period I was exposed to fungicide due to faulty equipment and almost without realizing it.

I can remember some severe headaches after that, which I attributed to the bad stress.

Later, towards the end of 2010 and beginning of 2011, I tried playing soccer and then I noticed a stiffness in my leg muscles and a feeling of dysmobility.

When I went for a run my calf muscles felt tight and during stretching the muscles were incredibly hard.

In summer of 2011, I started having problems and pains in my lower back and left leg,while I also noticed weakness in my left arm when lifting weights.
I then looked back in my mind and remembered that in the previous months I had quite strange symptoms such as muscle cramps, twitching and other symptoms related to als as I saw then on the internet.

In the first emg in 2011 I had a result of "possible anterior horn damage". I turned to a neurologist who, after the clinical examination, ruled out als and asked for a
new emg as the first one was done without needles and the measurements didn’t match with the conclusion.
In the second the result was "sparse high motor units"...
Those neurologists who saw it and seeing the clinical picture ruled out any possibility of als and referred me to a psychiatrist.

Since 2012 I have tried to continue my life normally, established my business, got married etc.
But I missed sports and at the same time I could see that the symptoms were still there.
My paternal family and my wife believed the doctors and thought I was hypochondriac.

In 2016, after a sudden lifting of an object, i suffered with a left foot drop. The MRI showed a problem in the vertebrae (pinch nerve) and fortunately after intensive physical therapy it returned.
I did an emg and it showed chronic neurogenic lesions in the left leg (excused due to hernia) and also chronic neurogenic lesions in the hands at the C7 point with a clear neck MRI.

The same old....''It's all in your head''

In 2019 my son was born and during those happy moments I could feel my facial muscles shaking when I laughed and I noticed an asymmetry in my face.

Doctors and family the same..."you don't have als, it's all in your mind"
All these years I observed a slow and gradual worsening of all symptoms culminating in April 22 when I suffered bell's palsy on the left side.
I did physiotherapy and it has come back 70-80%.
Since April until today, I have been seen by 3 neurologists and I have had another 3 emgs which are all clear.....(The docs made the emgs are at top 3 in my country)

All these years the muscles in the whole body have atrophied, I have mild swallowing issues and I feel that I am under-functioning and I sure that it is only a matter of time before I become disabled.

I forgot to mention that all these years i have done MRIs (brain,neck,thoracic,lumbar),numerous of blood test etc.

I'm totally frustrated....This is an endless nightmare.

Thank you and I’m sorry for any inconvenience.
 

lgelb

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I'm sorry you've had these troubles, but see no reason to attribute them to ALS. In fact, you have had many exams and EMGs that have ruled it out, not to mention that it doesn't take the years to manifest that your history would suggest.

If you really believe that total disability is only a matter of time, the first thing I would suggest is counseling for health anxiety, as there seems no basis for that belief.

You've had spine problems and PT, you've been treated for Bell's Palsy, you've been away from the activities that you enjoyed. So you might also benefit from a sports conditioning program (depending on the center, a physio or a physician might administer this) to try to see if you can build up your strength and musculature to resume sports safely.

I am sure you are aware that swallowing is one of those things that once you become conscious of it is very easy to feel you have a deficit, but an ENT can evaluate that for you.

The good news -- you don't belong here.
 

PassengerXIII

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To be honest I have not mentioned all my symptoms because there is no reason to bother the forum with them.
I think the most worrying thing is the generalized muscle atrophy I have throughout my body.
Right now I have a lot of difficulty walking and spend most of the day sitting or lying down
The reason I wrote my story is if anyone has any guidance.
I have already started procedures testing for lyme disease and environmental toxins.
Thanks.
 

Nikki J

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Well Laurie gave you some suggestions but honestly all you can do is work with your doctors
 

Bestfriends14

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In ALS, muscle atrophy happens after the muscle fails. So, if you have generalized atrophy, what is it that you can no longer do?
 

affected

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I'm so sorry you have lived so long with all this. Not bothering to mention all symptoms of course sounds like you have cherry picked what you think will sound like ALS or support your fears.
I hope you can find a way to live with what is happening or get some answers, but like your doctors, I would not think ALS. That does not mean it is nothing.
All the best, but all our senior members are agreed that being here won't be the least bit helpful.
The guidance I would give is to work with your doctors.
 

PassengerXIII

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Firstly,thank you all for the replies.
Secondly i want to mention that my symptoms are als-like according to doctors but with 3 emgs clear from May ‘22 till now they put als out of table.

To be honest,after all these years, i can’t trust them cause in my mind doesn’t exist the dilemma “als or nothing”.
They never ordered muscle or nerve biopsy,lumbar puncture or something else.
I don’t know if it is reasonable to keep als “on the table of diagnosis” cause i haven’t a clear answer yet but this situation keep me in brain fog and i have been a lot of time in this rabbit hole.

According to two naturopathics i have clearly inflammation of cns and they want to find the root cause to start face it.
I know whatever i have,i’m a really slow progressor but cause of the reason i grew up with trust in western medicine i would like an official diagnosis by them.

Ι’m completely desperate cause i don’t what causes my body fails,if it is treatable,if it’s not etc.
I’am at the time that i can’t make dreams for a happy life anymore or at least to put my mind and my mentality on fighting mode of any disease cause i don’t know my “enemy”.
 

Bestfriends14

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According to what you have written, no, you do not have ALS onset symptoms. In my experience, naturopaths have been few and far between in being ethical. There are some that are, of course, but I have seen many unethical ones come crawling out from under their rocks to rip people with ALS off. In any case, from your description, I would be very surprised that all of the doctors you have seen has said your symptoms are "ALS-like" but they've not diagnosed you with this. Perhaps you misheard them because your symptoms point away from ALS, which is why you have not been diagnosed. I would concur with your doctors and possibly look to a diagnosis of nosophobia disorder.

Again, though, you do not have ALS, so please do not be one of the frantic posters who think they know more than the doctors and forum members, and argue that you have ALS when the evidence points away from this. If you do not like any of the many, many doctors you have seen, you are always free to continue to doctor shop.

Good luck to you. Hopefully you can get help in letting go of your ALS fixation through a mental health professional.
 

affected

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I would think if you distrust western medicine this much - put ALS out of your mind and just live your best life with what you have.

We can't help any further but wish you the very best.
 

PassengerXIII

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My symtoms begun in the winter of 2010-11 and without ever having any health problems, cramps started, muscle twitches almost all over the body and mainly on the left side.
Another thing i noticed was the extreme sensinitivity for crying but I didn't attach any particular importance to it.
During the same time, in a soccer game I felt the muscles of my legs to be very stiff and without being able to coordinate them like before.
When I went for a run, during the stretching exercises, the muscles used to be hard, while during the training the peroneal muscles got tired very easily.
During that period came intense pain in the lower back with an impact on the left leg.

Around 2011 to early 2012 the tongue and face twitches started.
In the meantime, the first visits to neurologists and the first examinations had begun.
I went on with my life getting treatment for my mental health and a possible diagnosis of conversion disorder with negative results as nothing worked physically.

In all this time the symptoms were getting worse, they were more obvious at least for me.
Atrophies, I wanted and want two pairs of socks to fill the shoes, the tongue is sitting , constant feeling that something is stuck in the throat, difficulty in walking, spasticity on my feets, hands and torso during stretching exercises, since it's the only thing I can do from gymnastics along with walking.

In 2016, I suffered a mild foot drop on the left side, which improved after two months of treatment.
The visits to doctors had continued all this time had continued without finding anything.

I went on with my life, started a business, married my girl and continued to look, without feeling or being,healthy.

I had stopped since 2011 to exercise like before without having the slightest answer except "it's all in your head"

Unfortunately or fortunately, no one can say, no matter how many universities and examinations have been completed, that I am healthy when I know and feel my body.
I am not a doctor but I believe that each of us knows his body better than anyone else.

From 2016 until April 2022, I tried once again to continue life as if nothing was happening, but the symptoms made it very difficult for me.

On April 22, I got bells palsy all over the left side, which has not yet returned.
Since then I have had 3 emgs which are clear but mostly with diagnosed atrophy in the calves and hands (and they are definitely there elsewhere), now I climb stairs with terrible difficulty, I walk like a drunk if I let myself go, everything seems heavier and older I think than the body consists of skin, bones and very few muscles again.
I can't fully extent my fingers cause these are so stif.

The muscles have almost disappeared, there are quite a few neuropathic pains because probably the nerves are pressed by the lack of muscles, the muscles that are left get tired easily, my hands do not have a good grip, the fingers are almost skeletonized, I feel that I do not cough with a strong intensity and when this happens, my trunk muscles hurt.
I am always sitting or lying down.

Maybe I should have made this post from the beginning...

I find it hard to believe that a serious situation is not happening in the body and I find it hard to believe the doctors that I have nothing(!!!)

I don't know where else to go to find a solution and believe me I'm the first one who doesn't want to have als but I'm also researching if my symptoms match any other disease.

Sorry for the length of the text, but I feel that I should have been a little more specific.
 

Clearwater AL

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Get Real
Passenger... "I am not a doctor but I believe that each of us knows his body better than anyone else."

NO.... you're not a doctor. But... all the ones you've seen are highly educated and highly trained.

You were referred to a psychiatrist.... it appears you didn't go.

"I'm also researching if my symptoms match any other disease." We're not going to help you with
that because after three clean EMGs... and numerous doctors.

There is nothing more anyone here can help you with no matter how many more new replies you post.

It's past time for you to sign off this ALS forum., for your own mental health. This rest has to be with professional help.
 
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affected

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I think we have done all we can. You are still logged in here many hours later.
Just like it wasn't ALS in 2010 it won't be now, no matter how much text you throw at us.

You don't trust western medicine, but can I suggest expecting the terminally ill to try and figure all this out is really not an appropriate approach either.

All the best whatever path you choose. Senior members are now telling you we can't help at all.
Please don't reply to this with another very long post to try and convince.
 
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