Sinking - got a lifeline?

[Thomas3857]

Hi everyone.

I apologize in advance for the length of this post. I’ve only been a registered user for less than 24 hours but am really impressed with the empathy and knowledge of posters and moderators. What a fantastic resource. I am on this site to not only utilize the nuts and bolts of dealing with ALS (the stickies are very helpful) but as importantly writing this is therapeutic for me and, I hope, reading it will help others in a like situation.

It’s as if by writing these words my ALS-related journey becomes my reality rather than my nightmare and for me that helps. I thought a perspective from someone not-yet diagnosed but certainly having symptoms might be helpful to others and I plan on posting updates as my journey continues.

Anyway, here’s my tale.

Like many of you I was fit, healthy and led a very active lifestyle. 53 years old man married with two children. Fairly uneventful medical history. Noticed in November, 2018 the start of fasciculations in my left calf which quickly spread to my right calf. PCP said likely muscle fatigue. Fasciculations continued and started to then notice them in other areas of my body as well. Also little tremors in hands and pulsations everywhere. Really got concerned 2 weeks ago when my left ankle/foot started to tremor in certain positions - especially heel down like when using a gas pedal. So pronounced that my wife refused to drive as the car was lurching as if a new driver was driving! 😀Also noticed cramping in feet and calf and a couple of days ago my left leg buckled while walking. All of this led me back to the PCP ( muscule fatigue, really?)who recommended a neurologist who I saw early this week.

After a very thorough exam he said I was hyper-reflexive but showed no signs of atrophy. Other neurological tests were normal. He took 6 vials of blood (don’t have results yet) and I am scheduled for an EMG on May 2. He also ordered a brain CT scan. He mentioned ALS as a distinct possibility. Said if EMG was normal he would look at brain and then spine. Not a great comfort to have those options - like having to pick one of The Four Horseman of the Apocalypse.

So now I’m freaking out and so is my wife. I’m sure you vividly remember your first ALS-related news that dropped you to the ground. Hardest part for me is waiting three weeks for the EMG imagining the worst.

Not sure how to continue with the day-to-day stuff required of a husband and father. How the heck do you do it? I’m afraid I don’t have the strength and am fighting (ineffectively)the temptation to wallow in self pity and stay in bed. For those of you who face this on a daily basis I can’t fathom your strength.

Thanks for letting me express myself and for reading this rambling.

I will post updates as my journey continues.

ALS sucks.

Tom

 

[lgelb]

Hi, Tom, very much hope you don't end up spending a lot of time in our corner of the net but we'll support you whatever comes.

As you will have read, this could be anything and nothing. The lack of atrophy and weakness is more suggestive of upper than lower motor neuron dysfunction, but still with a long list of possible causes, MND being one of the rarer ones. I could say, X is more likely than Y from what you have said, but don't think speculation is warranted in your case.

The short answer to how anyone does it is, one foot in front of the other, and gather ye rosebuds with your wife and kids. And whatever the results of your tests, that doesn't change.

Best,
Laurie

 

[Thomas3857]

Thanks for responding Laurie. Knowing that I’m not alone in this helps more than you know. My heart breaks reading these forums.

Tom

 

[Clearwater AL]

Thomas, I'm sorry you have a Neurologist who would say that ALS is a distinct possibility
so early in your diagnostic process. The first visit and your initial Neurological tests were
all normal, no signs of atrophy.

You now have hung onto those words.

ALS is just one of 18 other possibilities an EMG may indicate. ALS is the rarest
of all EMGs performed. Most EMGs performed are normal.

Hope for the best...

 

[KarenNWendyn]

When you say about your very thorough physical exam that reflexes were hyper but “other neurological tests were normal”, I assume by this that the neurologist did not find evidence of weakness on exam.

If he did not note weakness on exam, then I’m surprised he even mentioned ALS as a possibility, especially before getting an EMG and other tests. An absence of weakness would point away from ALS.

As far as your diagnostic journey, it’s early times yet. You’ve obviously got something going on, but I think it’s way premature to even be speculating about ALS. I’m sorry the neurologist raised the possibility, because now it’s going to be hard for you to get it out of your head, especially with EMG a few weeks away.

In the meantime, consider getting away somewhere with your family and doing things you enjoy. You will survive this waiting period.

Keep in mind that an EMG can test for conditions other than ALS. If it is anything other than normal, I would recommend getting a second opinion from a neuromuscular disease specialist, especially if your current neurologist is not such a specialist.

 

[Thomas3857]

Thanks Al - neurologist likely said many things of which I only heard ALS. Think he was most concerned with the hyper-reflexivity. My knee reflexes especially which jumped like a NYC Rockette!

 

[Thomas3857]

Karen - thanks for your thoughts and advice. Other than the hyper reflexes all other tests were good. I walked fine, coordination was good and all strength related tests were normal. I’m at the gym 3 times a week and haven’t noticed any changes. Other than my knee buckling once my strength seems ok. I know something is up and intellectually I understand either I have ALS or not and no amount of wishing or worrying will change that fact. Emotionally, however, I’m struggling. Thanks for listening and responding. Means a lot. Tom

 

[Thomas3857]

Just a short update. Found out my right ankle movement is actually clonus. Also was cramping in that calf and was surprised that after icing the calf the clonus went away temporarily. I assume it’s because the cold kept the muscule from contracting? Psychiatrist suggested 50 mg Zoloft and Xanax as needed as I wait for my EMG test date. Any thoughts on controlling the anxiety/depression with meds? As always, thanks for reading. Tom

 

[KarenNWendyn]

Excellent idea.

Zoloft is a great drug for anxiety, depression, or both. Xanax is more like an extra med for fine tuning of anxiety symptoms but should only be taken as needed because long term use can become habit forming.

 

[Thomas3857]

Zoloft and Xanax in the morning don’t seem to be working. Taking lunestra at night to sleep. Waking up around 4 each morning and after a split second of realizing I’m not dreaming I panic and freak out. Still struggling with being in limbo between no official diagnosis but having classic symptoms. Started obsessing with watching fasciculations. Can’t focus on anything and starting to not eat. Really struggling. Thanks for listening. This is awful.

 

[KarenNWendyn]

So sorry to hear you’re struggling. It is hard to wait for a diagnosis. Meanwhile if the meds you were given for anxiety aren’t helping, please discuss this with the physician who prescribed them. Zoloft also takes a few weeks to kick in fully.

You have hyper reflexes but otherwise normal strength. Please know that you are unlikely to have ALS when your strength is normal. EMG is in a little over 2 weeks.

Please don’t let the fear ruin your life. Meditate, seek counseling, whatever it takes. We wish you the best, but we’re really not set up to soothe your fears and hold your hand during this waiting process.

 

[Atsugi]

Zoloft and Xanax not effective yet? Give it time, Thomas.
Earlier, you wrote: "a perspective from someone not-yet diagnosed but certainly having symptoms might be helpful to others and I plan on posting updates as my journey continues. " Umm, well, think about that. Without experience with actual ALS, a person's comments can be much worse than nothing at all. Don't put much faith in posters here who don't have ALS. The odds are that they don't know what they're talking about.

Waiting is hard. Get busy with your kids, school, clubs, drones, model railroads, whatever. But stay off the internet and do not research fatal diseases. You said you don't have the emotional strength to continuing functioning as a father under this stress. I understand. We understand. We really, really understand. And guess what? You'll do fine. Get out of bed, attend to the people you love, and put one foot in front of the other. That's ALL we do. You can, too.

I don't think you have ALS. As stated by someone else a lot smarter than me, it's surprisingly irresponsible for your neuro to mention ALS at this stage. There just ISN'T any reason to be thinking ALS. He/she got you worried for no good reason. Your twitches are NOT suggestive of ALS at all.

Stay off the net. Stay away from here. Enjoy life the best you can. Get your test results and rejoice.

 

[Thomas3857]

Just a short update. Went to psychiatrist last week to discuss meds and upcoming EMG. He examined me briefly - looked at the fasticulations and verified the clonus in left ankle and said very matter of factly that I had ALS. Upped my Zoloft and sent me on my way. Seemed pretty sure of his diagnosis. Feeling pretty low now. Will update wth EMG results Thursday. Thanks

 

[KarenNWendyn]

I’m glad you’re under the care of a psychiatrist. Please understand, however, that a psychiatrist is not qualified to give you a diagnosis of ALS. Those of us with confirmed ALS will tell you that even the opinion of a general neurologist needs to be taken with a grain of salt until you get in to see a neuromuscular disease specialist.

Perhaps your strategy is to presume you have ALS until proven otherwise. That way you won’t be disappointed if the diagnosis is confirmed and you’ll be pleasantly surprised if it isn’t. Maybe that’s a legitimate mindset.

The problem I see with that strategy is the time you waste stressing over the possibility that you might have ALS when in fact you could have something else and be enjoying your life in the meantime.

 

[Nikki J]

That is ridiculous. Fasciculations and clonus without an emg diagnosed ALS by a psychiatrist? An ALS specialist wouldn’t make that statement. The psychiatrist had no right to say that.

I am a genetic FALS carrier. The ALS specialist who examined me at the onset of weakness, confirmed my weakness, noted babinski and reflex abnormalities and said we will see what the emg shows.

Wait for the EMG and the opinion of a neuromuscular doctor.