Possible/likely ALS - afraid and uncertain

[zornsllama]

Hi all,

I am 21, male (yes, I know; read on though, please)

I have been severely depressed for several years. Last year I took to a lot of drug use and grappled with marijuana addiction. During the worst of this time, I smoked large amounts daily out of a gravity bong jerry rigged from a plastic bottle. While smoking, I noticed the smoke often had a slight chemical taste but ignored it; in retrospect perhaps I smoked a lot of plastic fumes.

Soon after that, I began sporadic muscle twitching in my left leg and having bad cramps (5 or 6 consecutive cramps in my foot, for example, and bad abdominal cramps after sneezing). Further, my fingers began to twitch side to side. It's been a few months since then, and when it happened I assumed I just wasn't exercising enough. Two months ago, I had a post infection fatigue syndrome, and the muscle twitching became near constant. Now many of the symptoms of the syndrome have worn off, but the twitching has gotten worse and full body, my legs are constantly stiff when walking, and my hands seem to be losing dexterity. I'm also seeing thenar atrophy.

I don't know what to think. Post infection syndrome can come with benign fasciculations but some of this stuff started before the syndrome. I'm scared and angry at myself for "giving myself ALS." I haven't yet had an EMG but hoping to get one soon. Seen a neurologist, but neglected to tell him about the smoking (shame, embarrassment); I'm seeing another neurologist tomorrow. As yet no clinical weakness so maybe that's a hopeful sign.

I know y'all can't tell me if I'm ok or not, but anything you can say would be really appreciated.

 

[ShiftKicker]

Hi there-

Your neurologist needs all the information in order to be of help. They do not judge lifestyle or personal choices. If you are not honest with them, they can't help you. You would not believe the stuff that young folk present to doctors. They expect younger people to do dumb sh**. Seriously. They will definitely have encountered worse than a dude who didn't think about toxic fumes from a creative use of a plastic bottle.

Straight up- you don't belong here. Whether there was possible brain damage from ingesting a toxin, or post viral issues, etc, etc, your doctor can help you more than the folks here. The fact you did not tell your last neuro about your drug use (they are not there to judge you- just help figure stuff out) has likely caused a delay in diagnosis and in treatment. That's doing yourself a serious disservice and causing a whole load of anxiety for yourself. Make the choice to be honest and you will find you will get the help you need.

Best of luck. Come back when you get a diagnosis from your neuro. People here are always interested in what DIHALS posters actually end up being diagnosed with- it helps provide an end to your story and may help future worried posters.

 

[lgelb]

Llama, you've heard the best advice you're going to get, first time out. Just do it.

Best,
Laurie

 

[zornsllama]

Hi all,

I have had an NCS and EMG done, both clean. However, the irregular quivering of fingers (which I have observed in some videos of the hands of PALS) is getting worse, and I am noticing ASL-style fasciculations in both my thenars; perhaps I just caught the symptoms too early? (Hopefully not the case). Having brain, spinal, and thoracic MRI done today, and will keep this board posted.

Thanks all for the support and advice.

 

[ShiftKicker]

Hey there-

Have you spoken to a neurologist? Did you tell them everything you posted here? We really can't help you more than that, as a doctor can see what you are talking about and we just have your subjective impressions. Please post what the neurologist tells you when all your tests come back and you have provided your doctor the entire picture (ie:the drug use).

 

[zornsllama]

Hi,

Thanks for your reply. I spoke to a neurologist about my concerns and also mentioned my worry about the drug use and toxin exposure. She herself did the NCV and EMG yesterday, and today I have had the MRI done. According to her, the NCV and EMG indicate no ALS. However my hands are still getting weaker, atrophying, and shaking quite a bit, as well as the backs of the hands are burning. Will post again on Tuesday when I find out the MRI results.

 

[Atsugi]

Just a personal note to anyone who reads this.

Always be honest with your doctors, especially about drugs, illegal or not. They've heard it all, and they are not going to narc on you. In fact, it might be deadly important.

 

[zornsllama]

Increasingly concerned -- need advice dealing with doctors

Hi all,

I posted here about a month ago. Since then, I am feeling short of breath 24/7 throughout the day, which acutely worsens with even mild exertion (e.g. after taking 3 stairs). The shortness of breath gets worse when lying on my back or bending over. Most concerningly, I now cannot sleep lying on my back. It started with waking up often throughout the night, with a clicking noise in my throat. After about two weeks of that, it has gotten to the point that I simply can't fall asleep when supine. I start to fall asleep, then I feel my breathing getting shallower as my muscles relax, to the point that I am barely breathing, and then I stop breathing and suddenly get jolted awake. For the last week, I have had to sit up in bed to sleep at all.

I had a pulmonary function test done 2 weeks ago, and my FVC (with prednisone) was 69% (other than that, normal -- no obstructive lung issues). Since then it feels as if I am having an even harder time taking a deep breath (although this is of course subjective and I'm quite anxious, so should be taken with salt). I have had an echocardiogram done as well -- no issues with my heart. There was an EMG done about 3.5 weeks ago -- it came back clean, which was good news at the time, but since then the breathing problems have worsened. Furthermore, it was only a limb EMG, and there is as yet no clinical weakness in any limbs.

A few days ago, I visited an internist who had access to all of my records (I am being seen at a university hospital). After I explained my symptoms and requested a sleep study, I was told that I need to treat my anxiety and that there's "no way to justify doing a sleep study." They told me to take some melatonin to help with sleep -- I have been doing so and it's not helping. I am still not able to fall asleep supine, I am still waking up breathless.

Certainly my anxiety is not helping the symptoms. I have been taking an anxiety medication and I will be starting intensive CBT therapy for anxiety in a few days. I am trying to be as compliant of a patient as possible. However, these symptoms are serious at this point -- I am getting somewhere between very poor and no sleep, the fasciculations and cramps continue, my body is extremely fatigued.

I am concerned that this is respiratory-onset ALS. In a vacuum, I agree this is a ridiculous claim to make because it's so rare in general, and in someone of my age almost impossibly rare. But I cannot imagine anxiety would make it difficult to breathe like this. My girlfriend has independently mentioned that as I fall asleep, she can hear my breathing become extremely quiet and nearly stop. If it is indeed respiratory-onset ALS, I perhaps don't have much time left and an early diagnosis would be critical.

Can anyone offer advice on how to proceed with my doctors? Even just general support would be very much appreciated.

Thank you all.

 

[ShiftKicker]

Mod note: Merged threads. Please continue posting in your original thread so experienced members have all the info in one easily read place.

I think your major sticking point with your doctors is that they do not see ALS, and you do. It seems likely they are spending a lot of time ruling ALS out to reassure you instead of concentrating on finding the actual source of your troubles. An internist will look at the overall health and history of an individual and start knocking off all the things they need to address first before heading straight to the expensive and invasive tests.

So, breathing issues plus a very specific ALS health anxiety= treat anxiety, eliminate those symptoms that can be explained by anxiety and see what is left. Anything left over, once the anxiety is being dealt with, can be more easily assessed and next steps taken. Your fixation on ALS is likely distracting them from going through standard procedure to eliminate all the other reasons for breath shortage and causes them to think anxiety because of your firm conviction you have a rare and terminal illness.

While it is no fun being dismissed as "anxious", it's an important thing to try to isolate. Anxiety can definitely create breathing issues. It can also ARISE from breathing issues caused by something else. Your CBT will definitely help make the distinction between symptoms that are physical/mechanical in source, and those that are either enhanced or caused by the physiological response to anxiety.

There are quite literally hundreds of causes for breathing difficulties. Some of them are easily sorted out, others are not so easily treated. ALS is at the bottom of a VERY long list of diseases that cause shortness of breath- and only when there are multiple other symptoms that support looking in that direction. It is the same leap to think "Brain tumour!!!" when you get a headache. Your internist is starting at the top and working their way down.

 

[KimT]

You don't have ALS but you should see a pulmonary specialist who can do a sleep study. Are you overweight?

At any rate, that's what I would do. My roommate has sleep apnea and he is very tall and thin. He was a pot smoker but the doctor said it was caused by the anatomy of his neck. CPAP works great for him and he gets 8-9 hours of restful sleep now.

Best wishes.

 

[zornsllama]

At this point, I've had a fairly extensive battery of tests done. The problem isn't that the internist wants to follow procedure and I'm asking for reassurance regarding ALS -- the problem is that all my tests have come back normal, so most other ailments have been eliminated. On account of this, my doctors have concluded anxiety. However, the breathing/sleep issues I am having are pervasive, and from what I've read, couldn't be caused by anxiety (I think shortness of breath in anxiety shouldn't worsen when lying flat).

 

[Angiegal]

My friend I hate to tell you this, but you are in what I call looping thoughts. Step back and reread the posts above.
No one is saying that your symptoms aren't real. They are saying that anxiety IS. Your doctors have said anxiety.
Could you ask referral to somebody who is well-versed in anxiety? Maybe if you get the anxiety under control you would then be able to work on the other issues.
Angie