Considering a second opinion

[Perigee Pro]

Hello,

Gender: Male
Age: 26
Family History of ALS: None to my knowledge

I've read through the sticky at the top of the page, and i'm pretty sure I don't have ALS. I've been having issues for the past 5 months and today I've just visited a neurologist who told me that I don't have ALS. The exam didn't seem very thorough, and there wasn't much of anything done during my visit today aside from talking about my symptoms and a (3 minute) brief physical exam, so i'm considering a second opinion.

I've had a CT scan and MRI. Both came back fine. I've had my B12 / folate / Thiamine levels tested, and they were normal. Thyroid tested fine as well.

My symptoms started with a tremor in my hands during certain movements, change in gait, difficulty with balance, and fatigue. I was quite a heavy drinker, but I've been sober for a couple of months now. I continued to drink for a month or two after these symptoms had started in hopes that it was the root cause of these symptoms. However, the symptoms persisted after becoming sober.

I started to have muscle weakness and a lot of muscle fasics throughout my entire body (legs, arms, tongue, back, face). I've had lots of muscle cramps, if I flex a muscle it will cramp and begin to quiver and fasiculate after relieving the cramp. I've also noticed that I'm shakey when doing certain movements slowly, such as leaning forward or in my shoulders when moving my arms up and down in a flapping motion. I haven't lost the control of any muscles, however, my muscles become weak very quickly.

I feel as though i'm slurring and have difficulty talking as quickly as I used too, but no one has asked me if I was drunk. I have noticed more people asking me to repeat what I've said, though. Swallowing has also seemed to have become slower. I'm not choking, but it just seems like a longer process than it used to be. I haven't noticed any significant atrophy. My forearms seem to be smaller than they were, but that could be because I haven't had much physical activity in the past 5 months, and I haven't lost use of them yet. Both left and right sides of my body seem to be even.

Does the muscle fasics happen before or after atrophy / loss of muscle function, or both?

Do you think these symptoms justify getting a second opinion? Or should I start looking elsewhere for answers?

Thanks for reading through all of this.

Best Regards,

-Jake

 

[Nikki J]

I think you should return to your pcp. Was that who ordered all the tests?

It doesn’t sound like ALS and apparently the neurologist did not think so either.

Your question should have been what is wrong with me? And you should ask your pcp that

It is great that you are now in recovery. Two months or so is not that long for your body to come back from that though. However, see your pcp review everything and go from there.

 

[GregK]

Do your symptoms warrant a second opinion? Not especially.

Does your anxiety warrant a second? Yep.

Go get your second opinion. You won't be satisfied otherwise.

 

[Angiegal]

I totally agree with Nikki.

Angie

 

[Perigee Pro]

Thanks Nikki. That’s helpful information. I’ll see what my PCP says. Regardless of what happens, at least it got me off the sauce! It helped me get sober, that’s for sure.

Best Regards,

-Jake

 

[lgelb]

Kudos on reclaiming your sobriety, Jake, which will help your health in many ways. Heavy drinking can certainly contribute to nutritional deficiencies not always evident in blood levels, even if everything were checked. Being off alcohol can also affect how your muscles and even swallowing feel.

I suspect a few more months of increasing physical activity (including lots of stretching; consider tai chi, ballet, Pilates, etc.) will improve the cramps, etc. As others have said, follow up with your PCP as you go.

Best,
Laurie

 

[Perigee Pro]

Update:

So after the neurologist confirmed that I don't have ALS, I decided to go to the gym yesterday to try to get my body back on a healthy track and moving again. I used to be very active and frequented the gym 5-6 days a week with a 1 hour weight lifting circuit. Unfortunately, yesterday I realized that I couldn't do more than 20 minutes, and more alarming my forearm muscles weren't able to activate properly. After the workout my muscle fasciculations were much worse.

Later last night I took a closer look and realized how bad the atrophy actually was in my forearms muscles that were closer to my wrists. When attempting to flex the forearm muscles, I noticed there was no muscle activation in the muscles closer to the wrist, and there was minimal activation (soft to touch) in my upper forearm towards my elbow, regardless of much I tried to flex the muscle. The lower part near the wrist didn't activate at all, and instead had craters.

To alleviate the anxiety, I decided to go for a walk. I walked about 4 miles, and during that 4 mile walk, I had issues with what seemed to be foot drop. The toe of my shoe was occasionally catching on the ground on my forward movement. This happened about 15 times during my walk.

So with all that being said, I've made an appointment with my GP for further investigation. I've also made another appointment with neurology for next Tuesday with a different neurologist to discuss my previous symptoms, and my new symptoms.

Honestly, the sobriety has been pretty easy. I haven't had many cravings for a drink. I quit drinking because of these symptoms, and in hopes that the alcohol was the cause.

If there's any interest, I will provide an update with how the neurology appointment goes next week.

Best Regards,

-Jake

 

[IgorZilio]

Jake,

Your neurologist already told you that you do not have ALS. I'm sure h/she would have noticed this atrophy you describe on examination. Even a not-so-much competent/experienced one would notice this degree of atrophy. Nothing to warrant suspicion.

Can you walk on your toes/heels? If yes, then no foot drop.

Do not go back to an old work-out routine out of the blue. You will most certainly exert your muscles a lot and, logically, as twitches are already a normal occurrence with work-out, more of them would be visible.

Consider doing the things Laurie said that put less stress on your muscles now, little by little.

I believe that the one thing that could possibly be considered for you is alcoholic neuropathy and still, highly unlikely. More likely: you are simply experiencing detox difficulties, that can take a considerable amount of time to resolve. No ALS, be happy about it. But by all means, see another neuro.

Stay strong. All the best.

 

[Perigee Pro]

Thanks for responding Igor.

Unfortunately, the neurologist didn't do much of an examination. She had me walk to the door of the exam room then back to the chair, and she checked my reflexes. She didn't check for atrophy. I also didn't point it out as a concern. I'm going to show the neurologist on Tuesday, and see what they say.

In the mean time, I will certainly be slowly introducing physical activity as Laurie has suggested.

There's no doubt that I have a disease. That disease is alcoholism. What else is going on with the connection to my brain and body is still to be determined. Unfortunately, I've had to take a leave of absence from my job until I get this figured out.

Take Care,

-Jake

 

[Perigee Pro]

Ayahuasca

Hello,

Weird question, but has anyone tried Ayahuasca, whether that be before or after diagnosis? If not Ayahuasca, any other experimentation with psychedelics?

 

[Atsugi]

Jake, a neurologist with years of training, education and experience was willing to put her license, living, reputation and future on the line when she said you don't have ALS.

And you are qualified to reject that decision because...?


PS: I moved your shaman post to here. People who are not diagnosed must stay in there own thread, and that thread must be in the Do I Have ALS subforum.

 

[Perigee Pro]

Jake, a neurologist with years of training, education and experience was willing to put her license, living, reputation and future on the line when she said you don't have ALS.

And you are qualified to reject that decision because...?


PS: I moved your shaman post to here. People who are not diagnosed must stay in there own thread, and that thread must be in the Do I Have ALS subforum.

I’m questioning it because there wasn’t any examination. Just a short conversation and I was sent on my way.

And even if it isn’t ALS, I think my symptoms warrant some kind of examination.

 

[IgorZilio]

She performed a basic neurologic examination. Just by looking at possible gait abnormalities, a few possible diseases are apparent. This, for example, excludes foot drop.

She must have noticed nothing out of the ordinary. In ALS you'd surely present with some abnormalities.

4 days ago this atrophy you report was unimportant/unimpressive, now it is. I think that's the mind playing games on you. Ask for a more detailed examination with your next neuro, however, it will also probably be normal.

About the psychedelics: 8, 9 years ago I tried some. Just got some meaningless weirdness out of them. Ayahuasca, from what I've heard, can be very dangerous.

 

[Clearwater AL]

Let me add this with my lack of knowledge as compared to others here.

When a Neurologist has an appointment with a patient, that patient may not
know it but... The Neurologist has his/her little book of observations during
the exam. I'll only give a couple... how you shake his/her hand, how you
get in and out of the chair, how you take your shoes and socks off and on,
how you get up on the foot stool getting on to the examining table, watches
your feet as you walk out of the office, some may ask you to walk down the
hall and back and many other little observations. I've probably told too many.

So when a patient says they can't stand on the balls of their feet... they
did it in some way during the exam and the Neuro noticed it.