Progressing Symptoms 40yo F

Heytbakes

New member
Joined
Dec 4, 2019
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
ID
City
Hailey
Hello,

Thank you for taking the time to read what’s happening with me. I am a 40 year old mom of three. I am going to list out my symptoms just in a way I can remember them, no particular order. Thanks in advance for your help and opinions.

- stiff pointer finger and thumb both hands - hands move slower like they are cold but they are not cold.
- thumbs tremor when not in use
- bicep fast twitches when trying to hold anything, phone, a kids stuffed animal
- hands cramp while clipping fingernails, coloring with my kids (immediately)
- Hand and arm muscles cramp after any level of exertion
- right foot - arch getting more pronounced, cramping all the time, twitching.
- all over body fasciculations
- behind left knee is very stiff - unstable
- balance is off
- calf cramps, neck muscle cramps - front neck muscles cramp when I yawn
- internal buzzing/vibrations in extremities
- so fatigued - I am ready for bed each day at 7pm but I have three little kids. It is so hard to get out of bed each morning.

I am aware of how off I feel through 99% of my day. I have recently been worked up for MS and had a complete brain and spine scan - results are clear. I go back to see my doctor in a few weeks and want to push for an EMG. I had a clean EMG back in Oct 2018 when I was experiencing some of these symptoms. They have since progressed over the years.

I have had periods of completely fear of ALS but have now reached a point where I am wanting answers to explain everything. My symptoms have been progressive and slowly compounding since the beginning of 2017.

Thank you,
Tessa
 
ALS does not progress as you describe. I would leave it to your doctor as to whether you need another neurology referral or an EMG, or what other suggestions they have.

If anything, the picture you desccribe seems systemic and I would really look to work with a good internist if you do not have one.
 
Thank you so much for the response. I have been to see my primary for a follow up on my MRIs. She did some basic reflex testing and strength testing and noted weakness in my pincer grasp on my left hand.

She has referred me on at her suggestion for a nuero appointment and an EMG to see if these newer symptoms are anything to note. She is thinking I have carpal tunnel and recommended night splints. Both of my thumbs and pointer fingers feel off with my left being worse. My muscles are tight along the inside of arm from my weak fingers all the way up to my bicep and this bicep is the one that shakes with use. Is this a sign that this muscle is dying? I do wake up with numb hands in the night.

A nuero appointment where I live is two to three months out and I know I am going to worry until then.

I also have read the stickies about what this disease is and isn’t and I know the odds are so slim but the mean lady in my head won’t turn off because everything I’ve read says this can be different for each patient. Thank you so much for your help.
 
No, the combination of tightness, numbness, and shakiness that you've described does not precede weakness in ALS.

There are millions of people with diseases that manifest somewhat differently for different people walking around in the US right now. ALS is not special in that regard. It's understandable that people are afraid of it, but you have functional limitations or you don't.
 
Hi, more questions please while I wait for the neurologist.

I am having trouble with cramping muscles in my SCM on both sides. My arms are cramping and in pain from this. It is difficult to open my hands all the way they just shake and then want to close again. When I bend my wrists my hands and fingers shake and tremor, bending my elbow and moving my neck produces the same result. Each day brings less hand strength over the last week. I am feeling pain but it is cramping and nerve pain. Moving my hands and fingers makes my SCM cramp. I start the day feeling well and then go right to cramping.

I’ve been to my primary, they don’t know what this could be. Does it sound like carpal tunnel? Should I be worried about more?
 
We are not your doctor. However in my opinion you don’t seem to be describing cts. There are many many conditions besides cts and als.

Tell your doctors and ask what is wrong
 
Hi Nikki,

Thank you for the message. I have tried to go away and stay calm, off the forums and enjoying my three little kiddos. I have done everything I can to seek medical help and am being told to wait until neuro. I have had lots of symptoms that I have been managing and have been just trying to take it day by day to get to my neuro appointment with a neuromuscular specialist scheduled 7/30.

I do have a few more questions if possible and I would love to keep you updated on what’s going on.

Is it common to have muscles in your jaw, cheeks, throat and neck to cramp when you yawn, drink through a straw, talk, smile etc? It is a very uncomfortable feeling. It feels like my throat is clamping closed.

Is it common to have widespread cramps? I’m having widespread cramps with any exertion, it’s painful and has me exhausted.

Is it common in als for movement to feel rigid? Almost like a shudder as you move your neck, or arm, fingers, ankle etc?

Is it common to feel pain intensify at night?

Thank you again, I very much appreciate your time and responses and promise not to challenge or push back. I am experiencing a lot physically.

Tessa
 
You are not describing ALS, but you may be describing a benign cramp syndrome. However, given the list of issues you came here with, I still believe a systemic explanation is more likely and therefore repeat my "good internist" suggestion. Your fear of ALS doesn't match up with your issues and therefore could be addressed in its own right.

With 3 kids and generalized fatigue, I would ask about exploring possible nutritional deficiencies, and would look for yourself at your sleep.

You're in the wrong place here, but feel free to stop back and let us know what happens on the 30th.
 
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