Convinced This is ALS

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franklind

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Learn about ALS
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It is difficult to consicesly summarize my story and symtpom progression but I will try my best.

My symptoms started a couple months before I turned 27, and I turned 29 a few days ago.

Because of the nature and progression of my symptoms, I am convinced my condition is terminal.

It all started with sharp muscle strains that were painful (stomach, back of head). I thought nothing of it. A few months later I began having chest pains, discomfort in my thoracic and cervical spine, tingling along my jawline, and abnormalties with my swallowing.
All labs and imaging normal. Then my symptoms began to spiral out of control.

I started to get muscle twitching and stiffness in my limbs, initial onset more predominant on the left side of my body. After weeks of stiffness, I began experiencing weakness. This slowly progressed and I was/am certain my left side was losing muscle mass accompanied by weakness. My left leg with brief reflexes and left arm with absent reflexes. I also experienced ulnar nueropathy. For over a year, my left side was only affected; however, the same progression is now taking course on the right side.

Fast forward, I am no longer working and barely function. Severe thoracic and cervical spine pain and what I see and feel to be the muscle supporting my spine wasting away. I have difficulty holding my head up and have constant arthritis (crepitus) in my neck. I have also have forearm narrowing and my only 'abnormal' lab is slightly elevated creatinine (yikes). I also have difficulty speaking; my voice cracks, is hoarse, and my tongue is scalloped with a crack down the middle.

To put in context, I was once a college football player and excersised vigoursly 3-4 times a week before this all started so it's difficult for me to hear doctor's say they can't find anything when I can no longer get on a treadmill. I am now bedridden and can no longer work. I have seen probably 30 doctors combining of GPs, specialists, and natropaths. Every and any 'treatment' modality I have tried has been unsuccssesful and I have spent a 'small' fortune trying to take my life back.

Most notably, I did see a neurologist at the Mayo Clinic October 2019 and he noted 'no convincing evidence of neurological disease' which is MIND BLOWING to me. My experience with this neurologist felt like a student who forgot to do his homework and was rushing to get it done 30 minutes before class. He noted my EMG was clean. I have a follow-up 21 January 2019 but feel like every doctor (specifically neurologist) I have seen is playing hot potato with me since they don't want to be the bearer of bad news. I also understand that a doctor likely won't diagnose anything until I can no longer walk.

I really appreciate those who listen to my story and respect your opinions.
 
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It doesn’t sound like ALS at all. Two years of symptoms with a negative neurological evaluation from Mayo and a clean EMG rules it out.

We will not be able to diagnose you on this forum, only tell you that your presentation does not suggest ALS.
i would recommend going back to your primary care doctor.
 
Frankind, your second from the last paragraph....

"Most notably, I did see a neurologist at the Mayo Clinic October 2019 and he noted 'no convincing evidence of neurological disease' which is MIND BLOWING to me. My experience with this neurologist felt like a student who forgot to do his homework and was rushing to get it done 30 minutes before class. He noted my EMG was clean. I have a follow-up 21 January 2019 but feel like every doctor (specifically neurologist) I have seen is playing hot potato with me since they don't want to be the bearer of bad news. I also understand that a doctor likely won't diagnose anything until I can no longer walk."

Maybe you should consider getting help for paranoia.

Finally.... " I have seen probably 30 doctors combining of GPs, specialists, and natropaths."

Apparently none have been concerned with ALS. Maybe the "hot potato" you've mentioned, missed or didn't hear
or want to hear is a worst case of health anxiety that is interfering with a root diagnosis that isn't ALS.
 
Thank you, Karen. What really concerns me is the ulnar neuropathy and forearm narrowing.

I've hit a dead end with my GP. My first GP just wanted to prescribe me anti-depressants, and another told me "this is out of my league". I was expecting the Mayo Clinic to either give me a neurological diagnosis or refer me elsewhere within the clinic.

I feel quite hopeless as this progresses.
 
In reading your past three posts that you have written in the last 18 months absolutely does not sound anything at all like ALS. I'm sorry that you have decided to give your life over to a disease you feel you have, but do not evidence having; not one bit. 29 years old and diagnosing yourself as having a terminal illness is terribly sad. It truly is. Life is so short and you've allowed your mind to completely take over your life.

If you have not done so, please look at speaking to someone who can look at this from a psychological perspective. Please dont dismiss it, as I feel they can help you and hopefully get you functioning again. Also, look up Nosophobia Disorder or Conversion Disorder- your symptoms seem to align with that more than they ever have with ALS. Again, speaking to someone who can look at your symptoms from a psychological point can perhaps help you get out from where you are currently.

Best of luck to you.
 
In reading your past three posts that you have written in the last 18 months absolutely does not sound anything at all like ALS. I'm sorry that you have decided to give your life over to a disease you feel you have, but do not evidence having; not one bit. 29 years old and diagnosing yourself as having a terminal illness is terribly sad. It truly is. Life is so short and you've allowed your mind to completely take over your life.

If you have not done so, please look at speaking to someone who can look at this from a psychological perspective. Please dont dismiss it, as I feel they can help you and hopefully get you functioning again. Also, look up Nosophobia Disorder or Conversion Disorder- your symptoms seem to align with that more than they ever have with ALS. Again, speaking to someone who can look at your symptoms from a psychological point can perhaps help you get out from where you are currently.

Best of luck to you.
I don't disagree that phycholoigcally I am a mess. The reason for this is I cannot do many if any of the things I use to be able to do and I honestly don't see what else could be causing these very serious issues.
 
I am not understanding how you can be "bedridden" and at the same time convinced that you will not be diagnosed until you can "no longer walk" [which was not true for the thousands of people with ALS represented here]. But if 30 docs have seen you, you will understand our inability to diagnose you from afar. And with a clean EMG and symptoms for this length of time, ALS is not on the table.

My only contribution is to suggest you make sure somewhere in there you were screened for adult-onset mitochondrial diseases, solid tumors, and muscular dystrophy. But neither is ALS, fortunately, and I am sure those have been ruled out, just crossing the Ts.

Best,
Laurie
 
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I am not understanding how you can be "bedridden" and at the same time convinced that you will not be diagnosed until you can "no longer walk" [which was not true for the thousands of people with ALS represented here]. But if 30 docs have seen you, you will understand our inability to diagnose you from afar.

My only contribution is to suggest you make sure somewhere in there you were screened for adult-onset mitochondrial diseases, solid tumors, and muscular dystrophy. But neither is ALS, fortunately, and I am sure those have been ruled out, just crossing the Ts.

Best,
Laurie
Thank you, for your input Laurie. I am "bedridden" in terms that I spend most of my time lying down. I can still walk but not without difficulty. I cannot do the activites I use to such as run, play basketball or golf. I also spend a lot of time lying down because my back and neck pain is unbearable (not like a pinched nerve, but dull pain with weakness). My experience with every doctor and specialist was "go see a neurologist" but every neurologist I have seen has basically told me they can't definiltevely find neuroligical disease.

Early on in my symptoms, i did have a brain MRI, throacic MRI, and Lumbar MRI. All were "normal for my age". I also have had all the lab work you can imagine.

I did have some hope when I tested positive for Bartonella Henselae and Quintana; however, long term antiobiotics and 10-pass ozone therapy have yielded zero benefit.

When I say I am convinved I will not be diagnosed until I can no longer walk, I mean this in terms that it's my speculation that neurologists may have suspicions but will not disclose until their are additional findings under the diagnostic umbrella. Many of my symptoms are "mere" characteristics (ie, ulnar neuropathy, forearm narrowing, facial weakness, heart palpitations, back and neck pain, voice cracking, scalloped tongue, etc.). I'd like to think neurologists will do their jobs regardless of the patient, but I also feel like my age results in me not being taken seriously. It's sad how many doctors have scoffed at me.
 
For the last time, (again, the very last time) your symptoms have nothing to do with ALS and you have been told this time and time and time again. Therefore, why are you here? For your own sanity, it's best you move on and leave this forum. It's doing you no good to be here because this is a forum for people with ALS, of whom you are not one. That's great news.

I'm sorry you are a mess psychologically, but please try to remember that the people here actually have this disease, or there are caregivers who are looking after a loved one who does. As such, your issues are not anyone else's issues. Sorry to be so blunt.

Again, time to let ALS go. You dont have it.

Good bye and take good care. Best of luck.
 
Last paragraph last sentence....

" It's sad how many doctors have scoffed at me."

It's sad to you but... It's clear to all the doctors and us you do not have ALS.

You are not getting anywhere here, no need to post anything further unless you're
pushing to have this thread closed for some mission of accomplishment to
impress yourself or others following you.

The more you post with repetitive descriptions the more I believe (my opinion) you
are just taunting this Forum.
 
I agree I am not getting anywhere here.
Last paragraph last sentence....

" It's sad how many doctors have scoffed at me."

It's sad to you but... It's clear to all the doctors and us you do not have ALS.

You are not getting anywhere here, no need to post anything further unless you're
pushing to have this thread closed for some mission of accomplishment to
impress yourself or others following you.

The more you post with repetitive descriptions the more I believe (my opinion) you
are just taunting this Forum.
I agree I am not getting anywhere here and am a bit surprised by the animosity. I understand supporters are trying to ease my fears but was hoping for a bit more substance in the dialogue rather than my character being attacked.
 
Dear Sir..
I am 55 y/o, been sick with a variety of of autoimmune issues since 19.. but had a successful career/active life until after at a post surgery PT eval she noticed weakness on the non surgical side & inquired about it. I’d been having difficulty for 2+ yrs with lifting a leg/tripping & recently started dropping things.. I thought it was just my other issues.. she called a Neuro friend & in 3 mos, multiple Emgs/EVCS, biopsy’s & 2 neuromuscular specialists, I was told I had ALS, Pseudo bulbar, it was rapidly progressing & I’d probably had it 2-3 yrs already. I have 3 kids, 32, 30 & 26.. only 1 is married.
I had just gotten my guest bedroom redone for my 4 & 8yo grandsons, have car seats in my car to pick them up when mom/dad are late, we have a special ‘bama lunch date’ or anything!
In 6mos I can no longer drive, bath myself, get in/out of bed, feed myself & ive started choking.. I’m get a PWC in a few weeks as I can only walk a few steps in a walker with help.
I came here and found support comfort & friendship from loving & knowledgable people.
They are either like me, terminal, facing death in the most cruel way possible or worse watching a loved go thru it!
So please excuse yourself & your attitude.. You’ve been told by multitudes of people far more educated in this area of medicine than you (30+?)
We live it every day...and we’ll never see children,grandchildren grow up, marry or graduate!
Get ahold of yourself and go live a happy healthy life.. something we will never get to finish!!
Nancy
 
Do you really believe that doctors aren’t diagnosing you because they don’t want to give you bad news? Really?

Doctors DO diagnose ALS “before patients can no longer walk”, although you said that you’re bedridden. (And keep in mind, you are discussing this on a forum where people are really and truly ‘bedridden’) So if you are that impaired, and if your widespread issues, limb and bulbar, were a result of ALS it would show up on an EMG and it would be really obvious to any neuro, even one doing “homework at the last minute.”

You don’t belong here. Best of luck to you as you work with your docs and definitely pursue help for health anxiety.
 
Finally, as a public service, I'll mention that long-term antibiotics even if you have a bartonella infection (there are many quacks in that forest) are seldom needed and have their own harms. And ozone therapy for a bacterial infection is a fraud, straight up. If you are still taking abx/ozone, I would seek a second opinion from a Board-certified infectious disease specialist.

If you came here for answers in re ALS, you have them. And if you think anyone here has shown "animosity," you might consider that everyone here is facing death via paralysis or is or has been with someone in that category. Your hostility toward the mainstream health system, which could probably do more for you if you let it, seems to have made its way to a forum that does not deserve it. All the best rediscovering the best health you are able.
 
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