Could this be ALS?

[Kay xox]

Hello all,
What a wonderful community you have built here of people so willing to help others and teach them about ALS. I want to say my heart goes out to anyone with this diagnosis.
I have made myself familiar with your ‘read before posting’ regarding could this be als and found it really insightful, so thank you for taking the time to type and share that.

I am a 26 year old female and have been having neurological issues for just over a month. It started with a headache.
The doctors tried to tell me it was a migraine which baffled me as I have never experienced one before. I also was weak down the left side of my body, more so in my left leg. These symptoms have been on going since and I am now having what I believe are muscle spasms (although they happen so fast I’m unsure if you can see them) all over my body. Arms, legs, stomach, face. I attended the ED Saturday due to losing complete feeling in my left arm, I did regain feeling after a few hours but it is now considerably weaker than my right arm. This happened once previously this week also although I got feeling back almost instantly. I’m finding myself dropping things when using my left hand, and have two small children who need me to carry them. I do have mental health issues and hope me posting here is okay, I’m not sure where else to turn. I’m extremely worried.

Thank you so much in advance. Please take care all x

 

[Nikki J]

Why do you not believe it is a hemiplegic migraine? Sounds pretty classic for one. Not a bit like ALS. Where to turn? Your doctor and your counselor.

 

[Kay xox]

Hi, thank you for replying. Hemiplegic migraines don’t cause muscle twitches on both sides of the body, nor do they last this amount of time. ( over a month) I was told this by another medical professional today, and they want to do further investigation. I will definitely continue to seek help from both.

 

[Nikki J]

And ALS does not cause loss of feeling and wax and wane as you described. Hemiplegic migraine weakness can persist for 4 weeks and it sounds like you had a couple of episodes. You do not need to always have the headache. However you are having more tests to be sure. Do not try to direct things toward als. Ask what is wrong.

 

[lgelb]

The reality is, "twitching" doesn't need some mechanistic cause. It can occur as your body's response to any kind of pain, stress, anxiety, rumination, etc. The mental health issues you acknowledge can be part of it.

This does not mean spasms and twitches are not real or bothersome, just that they don't necessarily factor into any kind of clinical diagnosis past what you have already been diagnosed with. Often, appropriate dietary, exercise, and mental self-care interventions can help. Dehydration, electrolyte imbalances, and "eating on the run" often contribute.

As Nikki says, further testing if/as advised may be appropriate, but don't be shocked if the original diagnosis stands. If so, there is still much you can do to improve your quality of life.

Best,
Laurie

 

[Kay xox]

Hi all,

I’m wondering if anyone can help me with regarding fasculations. With als do they begin suddenly and widespread or start off in one specific place and then spread elsewhere. I have been having some ongoing symptoms for two months headaches, slight weakness in my left arm and widespread pain alongside fasculations that I can see and feel pretty much all over my body. I am under a neurologist and have just had a spinal mri this evening so will now await results, but wondering if anyone can assist me with this question about how sudden they begin in als?

 

[Nikki J]

I think it is more common in ALS for fasciculations to start in one area but there are no hard and fast rules and you can not say any one kind of fasciculation is suspicious or not. That said most are benign and widespread pain points away from early MND

 

[Kay xox]

Is pain not a common symptom of ALS? I have been referred to also have an EMG done however there is a waiting list (around 3 months) my Fasculations are occurring everywhere including my back, toes, face however not affecting my tongue at present. They all of a sudden began one day after a major headache followed by weakness and have persisted.

 

[Nikki J]

No pain is not a usual presenting sign of ALS. It often comes later from immobility and severely weak joints

 

[KimT]

I can tell you how mine started. I had bad cramps on the bottom of my left foot and twitches. They persisted for several months, then they went up my left calf. So, mine were very localized. In the beginning, I had no pain at all.

 

[Kay xox]

Hi all,

I’m currently awaiting nerve conduction tests and an EMG after 8 weeks of consistent widespread muscle twitching, arm weakness, headaches, spinal pain and pain in all extremities. Brain and spinal MRI are clear, neurological exam was unremarkable minus slightly diminished reflex in my left knee.
Symptoms had a sudden onset on the 4th of may starting with headaches and weakness of my left arm and I ended up in the hospital ( was told I was suffering a Hemiplegic migraine but they later retracted this statement). The muscle twitching began soon after, in just one leg and has since spread to every other part of my body including my back and stomach. The headaches are less frequent but the spinal pain increasing especially when pressed and the weakness of my left arm is still very apparent.
Do these symptoms seem worrying for an ALS diagnosis?
Will I know straight away if the EMG is abnormal?

Want to take a moment to thank you all for the advice you give to others and show gratitude to each of you.

Thank you.

 

[ShiftKicker]

Hi Kay-

I've moved your post to your already open thread, as it keeps everything in one place and helps people to see what has been discussed already. Please make sure to keep your posts here so it's all together. thx

 

[Kay xox]

Thank you, I wasn’t sure how to do that. Really appreciate the help!

 

[Nikki J]

1 it still really doesn’t
2 totally depends on the policies of the place you are going. Often they are not allowed to tell you. Sometimes they are. They will know

 

[Kay xox]

Update: Had my EMG on Thursday last weeks won’t get the results till Friday when I see my neurologist. I have been having pretty consistent symptoms since my last post. Muscle twitching is becoming much more though and I have pain in my back and chest. I’ve also noticed it’s becoming harder to swallow food when I’m eating, and I have to give it a few tries before it eventually goes down.
Hopefully the emg results will clarify.