Mortified that I have ALS

Status
Not open for further replies.

BetterThanThis

New member
Joined
May 1, 2022
Messages
1
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hi all, looking to more or less get some concerns off of my chest because one of the most insidious things about this already horrifying disease is the waiting.
Starting in 2016, I noticed that, seemingly out of the blue, I began to have fasciculations all over my body but primarily focused on the right side of my body. In addition to this, I noticed that my right arm began to feel, not weaker per say, but out of place or just didn't respond as well to stimuli as my left arm; while I still able to do everything I wanted to with both arms, I noticed, when working out, that the right arm often fatigued more rapidly than the left. Finally, and this may be subjective, but I noticed that it appeared that my right arm and right leg where smaller than their counterparts on the left.

Of course, I am a hypochondriac so I immediately presented these findings to my PCP who didn't note anything physically out of the ordinary but still wanted a neurological consult. Long story short, I received an EMG and the nerve conduction studies were normal, or at least within normal range. Figuring this was conclusive enough, I was somewhat assured that I was free of the lurking scourge that is ALS and attempted to return to my normal routine. All the while my right arm and shoulder never improved, but didn't appear to worsen either. At least, not until recently.

A few months ago, I noticed that my coordination with my right arm seemed to be getting worse and I began having some minute shoulder soreness and pain after doing most activities that involved my right arm. I have taken aspirin multiple times to attempt to alleviate the pain in case there is any inflammation but the only thing that seems to cause the soreness to subside is simply not doing anything strenuous with the right arm. Around the same time, another symptom kicked up: cramps. For the past 40-60 days, I have gotten multiple cramps essentially every day, and while they're not enough to stop me dead in my tracks, they are still noticeable and cause me both mental and physical discomfort.

As it stands, I am presently awaiting an appointment with my PCP so that I may get a referral for another neurological consult. I know that most people on here are not doctors, but I just wanted to give my brain some room to vent as until I hear otherwise, this seems like the textbook onset of the disease nobody would wish on another human being. At any rate, I hope any and all who took the time to read this have a good day and thank you for setting aside a spot on this forum for people like me to gnash our teeth in lieu of driving ourselves sick with worry. All the best!
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,348
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I think you know that ALS doesn't come on at the snail's pace or manner you describe. Discuss your fears with your PCP and perhaps s/he can refer you to PT to get an evaluation and more information. Cramps can often be relieved through tinkering with your diet, hydration, and stretching -- a drop of magnesium lotion on any hot spots may help, and your PCP can discuss whether magnesium and/or calcium supplementation is worth trying in your case.

Best,
Laurie
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,540
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
You do not have a textbook presentation of ALS and in fact, have no presentation of ALS at all. This is because of the length of time that you have had "symptoms" without clinical weakness (failure), and no progression. As such, your fears are totally unfounded and that, hopefully, will give you peace of mind. Just a side note, my husband is never been "mortified" he has ALS as he has nothing to be mortified about. He is an ALS warrior, as is every other person living with this horrid disease.

I do hope your neuro consult can finally put your fears to rest as 6 years is a long time to worry about a disease you do not evidence having. Do keep us posted as to what your neurologist says.

Best of luck to you and take good care.
 

KevinM

Senior member
Joined
Mar 30, 2019
Messages
518
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Do you mind me asking your age? Thanks.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,872
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It says on their profile they are 27. You can see by clicking on a username if a person chooses to let it be public
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
861
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
Hi all, looking to more or less get some concerns off of my chest because one of the most insidious things about this already horrifying disease is the waiting.
You think the most insidious about it is the waiting. What complete and utter nonsense. Waiting for a diagnosis you'll never get, might be the worst for you. (Thank you for frankly admitting you're a hypochondriac!)
If really having to live with this disease in their lifes, people might have differing opinons as to what's the most insidious about it. Waiting doesn't come to my mind. Prior to diagnosis some uneasiness as to why the symptoms worsened, yes. Otherwise life looked good and there was much of it ahad. But waiting? No one healthy in their mind is aiming towards an ALS diagnosis. And once that verdict was spoken it was just hectic.
I felt rushed to keep up with my PALS progression, constantly adapting to new normals, at the same time trying to plan ahead for the next loss to come. The only waiting was for health insurance to come through for some gadget before he'd loose the ability to profit from it. And my PALS didn't seem too bored waiting either. He was hoping for a plateau that never came. Just a bit more of that good time in a phase that seemed worth living. And that was basically any state before his last two or three month.
So. That was me looking to more or less get some concerns off of my chest also. How does that feel?
 

Clearwater AL

Very helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,313
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
BetterThanThis...

"this seems like the textbook onset of the disease>"

What text book?

Not one anyone here has read.
 
Status
Not open for further replies.
Top