Does this sound like ALS?

[wishingwell]

Hi guys,

Let me start by saying that I think this website is an invaluable resource, and it really does help to clear up the many misconceptions that are out there on the internet about ALS. So thank you all for keeping such a fantastic resource.

Basically, I'm 25 year old male living in Australia, and I am having a few health concerns at the moment, and I'm just curious as to whether any of this sounds familiar and whether I should be worried about ALS or not. I will also be up front and say I haven't seen a neurologist yet, I'm simply seeking some guidance.

About 6 months ago, I started having these strange chest and back pains. They came and went indiscriminately, and they were accompanied by heart palpitations, high blood pressure and an elevated heart rate. Initially fearing it was a heart issue, I barked up that tree first. After a couple of months of visiting various doctors, I was diagnosed with an overactive thyroid gland, and I have been on medication since (thyroid blocking hormones and beta blockers).

At this point, I thought, "great, a diagnosis, I'll get better now", but it hasn't really panned out this way. The muscular pains have become more widespread - they are now in my shoulders, neck and legs as well, but they are still random and sporadic. I have been advised against exercising throughout the last few months, but I visited my endocrinologist last week and he is happy enough with my progress (he says my thyroid levels are back to normal), so I can start exercising again. At this point, he also halved my beta blocker medication.

In the last week, however, my symptoms have gotten worse again. Now, I'm not sure if it's linked to my halving of the beta blockers dosage, but I have discovered new symptoms. I have had tingling and soreness in my hands and feet, and twitches in my arms and legs (worse at night and when at rest), as well as what feels like "jolts" through my body. Most scarily, however, has been my nausea. For the last few days, if I've gone to cough, even a small cough, I've almost thrown up each time. I actually did throw up before after a big cough, and that has scared the hell out of me. Even though I have had thyroid trouble throughout the past few months, I have never had a problem like this. Now I'm afraid to cough.

In addition to all this, throughout the last few months (i.e. when my thyroid was said to be improving, according to my endocrinologist), I've had (at different times) random top of head tingling, pain and tingling throughout my arms (elbows/shoulders/hands - worse on left side), speech difficulties - it is now harder for me to raise my voice and articulate myself, pain on the front of my knees, and mild pain and tingling throughout my calves and feet (again, mainly left side). I have seen my GP about all this, but he thinks much of this can be attributed to my thyroid issues. I'm not as convinced, seeing as my thyroid is apparently improving, according to my blood test results, and my osteopath who I've been seeing for my muscular issues is also not convinced about my GP's view either.

Now, I know this is a very exhaustive list of symptoms, and I haven't yet seen a neurologist (do I even need to? Do these problems *sound* neurological?), but I was just wondering whether anyone has experienced anything similar to this, and whether I should be going to see a neurologist for these issues?

Thanks for reading, and I look forward to your responses

 

[wishingwell]

Oh, I should also add that my reflexes are hyperactive when touched by somebody else, and that I have not experienced any noticeable weakness in my arms, hands, legs or feet. Is my nausea/gag reflex a sign of weakness? Is that a symptom of bulbar ALS onset?

 

[laurel]

Certainly sounds like your concerns are related to your thyroid disease and/or medications. Myopathies and GERD often go hand in hand with thyroid problems. Nothing sounds at all like ALS. Head back to your endocrinologist. Try some Pepcid AC for the GERD like symptoms and see if it helps. Best of luck.
Laurel

 

[trfogey]

Didn't see any ALS symptoms or indications in that beefy tome. Wait until your endocrinologist is happy with your thyroid situation before volunteering for more health anxiety would be my advice.

 

[mysticunicorn66]

I have thyroid issues too. If mine gets "out of whack", the sides of my ears tingle and the area around my ears...kind of like a pins and needles sort of tingling. Get things in line with thyroid. If blood pressure is also elevated, that could also be due to thyroid. See an endocrinologist. Make sure they do TSH, T3, and T4 uptake tests and not just TSH. need to watch caffeine if you have issues with thyroid, esp. overactive thyroid--will raise you blood pressure too.

 

[wishingwell]

Thanks everyone for your informed opinions and advice, but I just have a couple more questions (yes, I know I suffer from anxiety to an extent but I just want to clear a few things up).

I am still suffering symptoms as outlined in my post above. In the past few days, my hyper reflexes have been of particular concern. As have my fasciculations... they are worse when I have just been exercising and are generally found in my legs and arms, but also in my chest and stomach. Also, I've had bad wrist and outer lower leg pain (feels like a calf cramp on the outside of my left leg)... for two nights in a row I've also woken up with no feeling in my pinkie, but after I shake this out the feeling returns after about 10 seconds... and I have had mild pain in my thumbs as well... I feel like most of the symptoms I'm having are on the left side of my body, although I am also having sporadic pain on my right side (mainly in hands and feet)... so in order to add to my knowledge, could someone please explain why this would confirm that I *don't* have ALS? I know I have anxiety, but I cannot get to a neurologist for another week at least because I am currently interstate. I am also continuing to have mild chest and back-of-shoulder pain, and fairly extreme overall fatigue.

I also noticed before (and this might not, and probably does not) have anything to do with ALS, but I noticed that I can't wrap my fourth toe over my third toe on my left foot, but can on my right foot... is this a sign of weakness? Again, it's probably feeding my anxiety because this is also on the left side of my body, but I just want to learn more.

Thanks in advance for your clearly more informed responses, and merry christmas to everyone here.

 

[trfogey]

I am still suffering symptoms as outlined in my post above. In the past few days, my hyper reflexes have been of particular concern.

Really? How so?

As have my fasciculations... they are worse when I have just been exercising and are generally found in my legs and arms, but also in my chest and stomach.

Happens to a lot of people. A lot of people that are absolutely neurologically healthy.

Also, I've had bad wrist and outer lower leg pain (feels like a calf cramp on the outside of my left leg)... for two nights in a row I've also woken up with no feeling in my pinkie, but after I shake this out the feeling returns after about 10 seconds... and I have had mild pain in my thumbs as well...

Pain is not a typical symptom of early ALS. Neither is numbness. Neither is the presence of symptoms in several regions of the body within 6 months of the onset of symptoms (assuming that you are counting the chest and back pain from six months ago as part of your reasoning toward ALS/MND). See a pattern here?

I feel like most of the symptoms I'm having are on the left side of my body, although I am also having sporadic pain on my right side (mainly in hands and feet)... so in order to add to my knowledge, could someone please explain why this would confirm that I *don't* have ALS?

You've given a symptom history of about six months in length. What we know about ALS is that its progression is essentially linear -- "start fast/cripple fast/die fast" or "start slow/cripple slow/die slow". If your condition has progressed to all four different limbs, your thorax and abdomen, and possibly your throat in six months you had best be praying to whatever deity or force that you worship that it's not ALS, because that much progression in that short a time is what we PALS would call extremely rapid progression with a very short prognosis for life expectancy.

For every person like me that makes it five years post-onset, there's a couple of PALS that don't make it one year post-onset. Are you volunteering to be one of the two short-timers?

Fortunately, for you, you are not having the follow-on symptoms that ALS/MND always brings, so you don't have to worry about being one of the two short-timers. That's why we say that having twitches and cramps all over your body in a short period of time without the follow-on paralysis points away from ALS/MND. If your twitching and cramping muscles are being caused by ALS, paralysis always follows, starting as measurable clinical weakness and loss of function that never gets better, only worse, until you can't use the muscle any more.

I also noticed before (and this might not, and probably does not) have anything to do with ALS, but I noticed that I can't wrap my fourth toe over my third toe on my left foot, but can on my right foot... is this a sign of weakness? Again, it's probably feeding my anxiety because this is also on the left side of my body, but I just want to learn more.

I'll assume you are being facetious here and refrain from addressing this. If you have a concern about your toes, see a podiatrist.

 

[Alyoop]

May I ask a question.......if you are not sitting in a doctors office, having a clinical examination, how the heck do you know that you have pathologically brisk reflexes?

Like trfogey, was your comment about your toes for real? Heck I cant wriggle my toes at all on one foot and I don't have ALS, it's just me! If you start examining your body in such depth, you will find a myriad of asymmetrical differences. You will drive yourself crazy with worry if you examine yourself. Best to leave it to the experts.

 

[wishingwell]

Thanks again for your responses.

I obviously don't know for sure that my reflexes are pathologically brisk, but I also know that they have never been like this for me. I have noticed a change, and I will be seeing a doctor next week to have them tested.

Nevertheless, I am still very concerned about my symptoms. In the last few weeks, I've noticed changes in my speech. I now speak really quickly, and I also have trouble articulating myself. Being a writer, this has never been a problem for me in the past, and the worst part is that I am fully aware of it. I have also been nauseous virtually 24/7, because it feels like I have something stuck in my throat. I have had no swallowing difficulties or choking, although it feels like I could choke at anytime. This is among my most concerning symptoms.

My other most troubling symptom is my left leg. I feel as though it has been getting tired really easily in the last few days. Even after a brisk 5 minute walk, it becomes noticeably sore and fatigued. This never used to be the case, and I have always been reasonably fit. Also, I have noticed that it also gets tired when I am lying in bed on my back with my left knee bent. I also get more fasciculations in this position (mainly in this leg and foot)...is this a sign of weakness?

I have also continued to have general fatigue, unrefreshing sleep, as well as fasciculations in other parts of my body. My left arm is also exhibiting some signs of weakness (it is becoming an increasingly difficult effort to make a strong fist, for example). I should make an appointment to see a neurologist, shouldn't I?

 

[trfogey]

I should make an appointment to see a neurologist, shouldn't I?

No, your primary care physician would be the best place to start. With all of your complaints, a neurologist is way down the list of specialists you need to see.

 

[fitzroy]

I should make an appointment to see a neurologist, shouldn't I?

If you're not already aware, very few Neurologists in Australia will accept a self-referral. You'll need that from your GP or another specialist who has medical evidence and justification to make the referral on your behalf.

 

[patricia1]

are you taking anything for anxiety or panic attacks or are you in therapy .You can't continue like this
Get a second opinion on your thyroid function test .
ALS shouldn't be in the equation

Pat

 

[wishingwell]

If you're not already aware, very few Neurologists in Australia will accept a self-referral. You'll need that from your GP or another specialist who has medical evidence and justification to make the referral on your behalf.

I am aware that I would need a referral to see a neurologist, and that's one of the reasons I plan to return to my GP and endocrinologist in the new year. And Pat, I'm not taking anything specifically for anxiety, only four tablets a day for my thyroid, and 60mg of beta blockers (20 in morning, 40 at night) - until 2 weeks ago I was on 80mg.

I'm still concerned, again primarily with my left leg and speech, and I'm continuing to monitor the situation. The general muscle pain that I've been dealing with for nearly a year I can put up with...it's this left leg seeming weakness/tiredness, and speech changes as outlined above that I've had for more than a fortnight now that have me particularly anxious. My loved ones have now also started to notice this, which of course is only serving to feed my anxiety.

 

[notme]

ALS doesn't make you talk faster, and it doesn't cause nausea. Deal with the thyroid and stop with worrying about als, you don't have it. Good luck

 

[wishingwell]

Thanks for your response, notme.

My nausea has subsided in the past few days, as has much of my anxiety, but in the last day or two I have encountered fresh difficulties in swallowing. Specifically, it feels like there is something stuck in the back of my throat. Generally, I am able to cough something back up (i.e. there *is* something stuck in the back of my throat), but the feeling sometimes persists, is this an ALS concern? Moreover, I have also had coughing fits (twice) at the end of meals after having a drink of water.

Regarding my speech issues, I've noticed that most of them tend to occur at night when I'm tired, and the issues tend to manifest themselves more clearly when I am talking softly than loudly. I.e. sometimes my articulation of certain letters is unclear, as if I'm mumbling some words... is this an ALS concern?

Regarding my muscle pains/twitches/tingling, I've been booked in for an MRI on my spine to see whether any discs are pushing on any nerve roots (or any other issues).

Thanks again in advance for any responses.