Early ALS like symptoms getting progressively worse, very worried.

[Sonia]

I've read many of the posts on the ALS forums and have decided to make my own post in the hopes that someone can offer some insight to my situation. I appreciate any feedback I can get as this has become something I cannot ignore and am constantly looking into.

I am a 27 year old female and am fully aware of how unlikely it is I have ALS, but I have so many symptoms and have yet to receive any answers from my doctor or neurologist. This started months ago. The first symptoms I had were problems with my feet and hands. The problems in my feet are hard for me to elaborate on because I had back surgery back in October to remove a herniated disc in my lower spine which had caused drop foot in my right leg. Since the surgery the drop foot has gone away. i noticed something off with my left hand first early last year. I would be holding my phone and all of a sudden it felt as if I couldn't grip it properly and my fingers felt weird and crampy. That happened a few times over the course of a few months.

In the months following my back surgery it has been getting increasingly worse and has been affecting my right hand as well to the point that my hands just always feel uncomfortable and sort of crampy. It is a hard feeling to explain but I now have problems typing and type incorrect keys and also sometimes have trouble holding a fork to eat. I also have trouble using my arms for too long. Doing my hair or hanging clothes for example gets tiresome and my arm starts feeling like I'm over exerting.

I had discussed these issues with my surgeon who told me they aren't related to the surgery because the part of my spine effected only impacts the lower extremities. I did have an MRI done on my upper spine to rule out a spine issue as the cause. This Feeling has also been happening to both feet. They feel stiff and get crampy, particularly at night. If I point or flex my feet for too long it cramps more. I know ALS is weakness but I have read many stories that ALS has started with similar crampy feelings.

The newest addition to my symptoms is that I have been having problems with my mouth. I have had a lump in my throat feeling for a couple of weeks. When I swallow spit it feels like it is not going down properly. I also frequently have to clear my throat. No problems drinking or eating. A few night ago my jaw started twitching. It was as if my teeth were chattering but it was moving side to side slowly, not up and down. This went on until I went to sleep and when I woke up it was better. I have also been biting my cheek while eating and feel an overall semi weakness with my cheeks and lips.

For the past week and a half I have been having pressure headaches and a weird feeling of having chills in my head and scalp almost every day. I occasionally have twitches in my legs, arms and face that I can see but it will only last a few seconds and then stop. I am going back to my neurologist next week. Last time I saw him he said he didn't think it was anything serious because I have no outright weakness but the headache and mouth problems are all new since the last time I saw him. Like I said, ANY feedback is greatly appreciated and I apologize for burdening any of you with my problems.

 

[Atsugi]

Really hard to read your post. . People with ALS may not be able to make so much effort to read that wall of print. Please make paragraphs

 

[Atsugi]

fingers felt weird and crampy…a few times over the course of a few months: ALS doesn’t feel weird.


hands just always feel uncomfortable and sort of crampy: New onset ALS doesn’t feel uncomfortable.


my arm starts feeling like I'm over exerting: ALS doesn’t “feel” like overexerting. You muscle won’t exert.


frequently have to clear my throat: Nothing to do with ALS.


biting my cheek while eating: That’s bruxism. Lots of causes. ALS isn’t one of them.


pressure headaches: Not ALS.


weird feeling of having chills in my head: Again, this is a feeling, not a muscle weakness.


occasionally have twitches: Twitches are caused by many conditions. Even healthy people have twitches.

 

[lgelb]

Sonia,
I think an EMG could help rule out nerve problems and help you and your docs hone in on what the overall explanation for your symptoms might be (either suggesting or ruling out the nervous system or musculature as diseased). I will differ from Atsugi in that things like cheek-biting, fatigue on exertion, throat-clearing can be part of a neuropathy picture, but your overall picture doesn't say "ALS."

There are many possibilities, from a virus to bacteria and adult-onset muscle disease, and it will require testing to sort them out.

The good news: no one here is going to read what you wrote and think about motor neuron dz as the #1 contender. Let us know what your next appointment yields.

Best,
Laurie

 

[Sonia]

Thank you very much for taking the time to read and reply to (and edit) my post. Even though reading the sticky initially eased my worries about ALS, after reading many accounts of first symptoms I saw a lot of similarities and couldn't help considering it a possibility.

 

[Sonia]

Thank you, Laurie, for the reply. I will keep you updated on anything I find out.