Young Female with Family History of ALS

[cshin]

Hi everyone,

I'm a 28 yo female and my father passed from ALS at the age of 48.
I understand familiar ALS is very rare and makes up only about 10% of ALS cases, but nonetheless, witnessing the illness firsthand has scared me enough to believe in the possibility of it for myself pretty much all my life. The fear has been the curse...
So it is with a heavy heart I'm writing here. Ironically though, spending time on this forum had me in awe at the persistence of life and the incredible tenacity each of your lives holds -- that life goes on no matter what. It does feel inappropriate to confide on what could be my hypochondria (hopefully) to this group here, but as you can see I can't help myself so please bear with me.

I can't pin down an exact time line, but over the past 3-4 months or so, I've been experiencing some weakness and arthritis-like pain accompanied by twitching, cramps, and fasciculations in my left arm and leg -- cramping and fasciculations in the leg more so than in the arm; the arm only gets twitching and comparatively slight weakness, and the feeling of tightness and occasional twitches only appear in the forearm/wrist area.
An example of a weakness is feeling too tired to hold the steering wheel with my left hand during my 15-20 minute commute to work -- not just a for couple days, but for several days, weeks, still present today, although it feels that the weakness has not gotten worse.

The cramps are more prominent in the left leg, both legs experience twitching and fasciculation every single day, several bouts a day -- not your typical spasms; continuous spasm and jumping for several minutes and the intensity is strong enough you can see an area the size of my palm swirling in waves. I haven't noticed the fasciculation worsening, but the cramps and pain in both calves, especially in the left, have gotten more intense and frequent. The twitching and jumping have gotten more intense and frequent but still localized to the same spot.

I noticed about 1.5 months ago that I keep dragging my left foot while walking -- haven't fallen yet, but have come very close to falling in the shower several times and hard to maintain balance.

Pretty much every single time I walk, I drag the foot and I have to concentrate with much effort to not let it drag.
Left leg also feels a lot more tired in general and not as limber or strong as right -- if I were to lie on the floor and try lifting my leg up, I have noticeably harder time lifting the left than the right. Similarly, I have no trouble lifting my left leg (about a foot off ground) while balancing on right leg, but very wobbly and feels significantly weak when I try to do the same on left. Same feeling of weakness on left leg when try to walk a straight line.

My limbs fall asleep very frequently as well -- pretty much after any kind of physical exertion, like trying to hold a tree pose for and stretching, but also just sitting on the toilet and holding my phone for more than 10 minutes. Flushing down the toilet, pushing or pulling one of those bigger glass doors, or opening a can of soda have also become more laborious and give me arthritis-like pain.

One last symptoms started actually just about 2 weeks ago -- I gagged several times while trying to swallow my meal. I did not vomit, but my throat was labored enough that I was gagging and having a hard time trying to keep the food down. In the past 2 weeks, I've had about 5 instances of this gagging and my throat muscles feel tense at rest, almost like the feeling of a lump in the throat when you're trying not to cry. This sensation is the most intense right after gagging, of course, and does subside overtime, but does not eventually go away.
I have noticed though before the gagging that my neck muscles, specifically on either side of the neck, have been very stiff and taut. When I try to turn my head left and right, the muscles feel pulled and very taught.

Thank you for taking your time to read my long message. Learning here that we survive on kindness from strangers more than I'd ever taken the time to realize.
My father suffered so much more so emotionally than ever physically -- it was as if his life just withered away and he suffered so much for nothing, all alone. Seeing your posts in this community though shifted something in my psyche. I know now that he didn't suffer in vain and that every single second of his life was packed with meaning and purpose. I used to think ALS took those things away from him and his life, but I realize now it didn't and couldn't -- so thank you all for that.

Sincerely,
-- C

PS -- I gotta admit, there is a better chance that all my "symptoms" are nothing but benign and it's my hypochondria I need help with. I'm also just trying to come to terms with just the existence of this illness, something akin to a coming-of-age anxiety if anything...I hope that's the case and that you can talk some sense into me.
Blessings and Peace to you and your loves ones,

 

[ShiftKicker]

Hello-

I am sorry for the loss of your dad. ALS affects whole families as they watch loved ones struggle. It is very common for folk to worry about their own health when they witness the profound changes and loss loved ones struggle from with a diagnosis of ALS.

The first thing we always recommend is that you visit with a doctor for an exam. That can help with figuring out what symptoms are perceived and which ones are observable by a physician. We also recommend you read the Read Before Posting link as it does answer quite a few questions. It sounds like you are aware of how stress can affect you physically, and I am hoping you are receiving some help for this. Everyone deserves support, particularly after traumatic loss.

 

[affected]

Hi I'm so sorry about your father.

I don't see you mention seeing a doctor?
Please do that as you really aren't describing ALS onset and you need to be examined so that your symptoms can be discussed with you properly.

 

[cshin]

Hi affected and ShiftKicker,
Thank you so much for your thoughtful replies.
To your question affected -- I did see my PCP but he didn't think much of any of the symptoms I described, but gave me a prescription for omeprazole which is for acid reflux.

I forgot to mention that I've on several occasion experienced difficulty with speech and articulation -- not necessarily slow in speed, but I would jumble up a bunch of words because my tongue couldn't articulate; it felt like my tongue was cramping up inside and not able to keep up with the speed of speech; no tongue spasms or twitches though.

I did read the "Read Before Posting" guidelines but my headspace is not able to distinguish between actual ALS symptoms vs. what I'm experiencing. I apologize for pestering you all once more.
Affected of ShiftKicker, would you be able to lend your insight on what's considered "hallmark" symptoms? Before getting to the point of stumbling, falling down, and inability to carry out mundane tasks.

 

[KevinM]

I, too, am very sorry for losing your father at such a young age, and I completely understand your anxiety. Like the others who have posted, please work with your doctor(s) to help quell your fears and if necessary, order the appropriate tests to rule this rare disease out. I’m reminded of a quote from other members here that I believe is appropriate here: “when you hear hooves, think horses, not zebras.”

Because there is such variation with this disease, your question about “hallmark” symptoms is very hard to answer. I’m sure you have read online the numerous generalized initial symptoms, such as weakness, fasciculations, speaking or swallowing issues, muscle spacticity, etc., but a lot depends on whether Upper or Lower Motor Neurons (UMN/LMN) are first affected, whether it is limb onset or bulbar onset, and so on.

If LMN limb onset, a majority of pALS often experience the (usually) painless loss of function in one or more body part, such as difficulty buttoning a shirt, foot drop, or clinical (not your own perception but that of a trained neurologist) weakness in an arm, leg, shoulder, etc. If the UMN‘s are first affected, a clinical exam often reveals hyper-reflexes, muscle spasticity—which is not to be confused with cramps or twitches—and balance issues. If the initial symptoms are primarily, though not always exclusively, with speech and swallowing (Bulbar onset) there might not be weakness in other parts of the body in the early stages.

it is important to recognize, though, that a good percentage those of us ultimately diagnosed started with symptoms that weren’t the more typical ones described here and on the internet. Too much variation to describe here, which is why it is probably not wise to to say “I don’t have loss of xyz function, so I’m fine,“ or conversely, “I have this or that symptom so I have ALS.“ Do not rely on the internet or even this extremely knowledgable group of folks here for answers.

Wishing you the best as you work with your primary care provider to provide you the peace of mind that I’m confident you will find. Best, Kevin

 

[Clearwater AL]

Cshin, You've gone from foot drop to adding... (forgot to mention below) with a rather lengthy initial post.

"I forgot to mention that I've on several occasion experienced difficulty with speech and articulation".

As others have noted... no indication you have yet to see a PCP. It has got to start there or all of this
is rather moot.

Please see a PCP before you post any further.