Leg weakness and twitching, undiagnosed

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Dimitra_123

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Hello beautiful people.
I apologize beforehand for taking some of your time. I recognize you do a great job in here, I have been reading the threads for many months now.
I have been debating for so long with my self if i should post or not.
However my anxiety has taken over after five months of everyday battle with physical symptoms and after seeing so many doctors.
Before i shortly tell you my story, I would like to confirm that i read the "read before you post"
I just want your advice on whether you believe this resembles to als and if i should keep looking in it.
I am 32 and apart from some fatigue after covid (in March 22) I do not have any other health issues.

May of 2022: I had a very stressful event in my life and this is around the time my muscles started feeling tight. I had a hard time walking up stairs since I felt my legs weighted so much. At that time i still had fatigue from covid, so all these combined made me feel exhausted.
In the middle of June 2022: I was on a trip, where I walked so much, and by the time i left, my right leg got so tight and painful,,pain beginning from my back. When the pain went away my leg was left feeling weak. In the beginning i thought it was all in my head.
I lived with a weak leg that trembled every time i was trying to excercise or swim, until the end of July 22 when i felt i had no balance and I visited a neurologist.
He confirmed the weakness in my right leg, which was also slightly atrophied, and he also found increased reflexes in my left side.
After that I had so many tests done such as: brain Mri - clear, spine mri : i had five slipped discs in my neck area but none of them could affect my legs, also they found i had scoliosis but they told this has nothing to do with my leg as well, no obvious problems with my back. I was also tested for myasthenia, MS and a bunch of blood work. CK levels are normal.
Then i visited an orthopedic surgeon and he found nothing.
I visited a rheymatologist and he also found nothing after extensive blood and physical testing.
My leg was still weak and every time i walked a little more than usual it got so painful and tight. All the other times it felt heavy and weak. I undestand something is wrong with it and sometimes i feel like it is not there anymore.
By the middle of August 2022, muscle twitching began in this leg and within two weeks i was twitching everywhere. Twiching now is almost constant in almost every place and some times i feel like my muscle is electrified and there is a strong twitch that instantly goes away. Also twiching usually stops when i move the muscle.
Then I had an emg that was normal even though they told me, there is a small difference between my right and left leg. They saw no fasciculations at that time. They suggest it was time i saw a Professor Neurologist.
By the beginning of September 2022, my right hand also started feeling weak, and I started dropping some things and have difficulty with small moves. Sometimes i experience muscle tension all over the hand and i also trip often. I actually went to see the professor neuro who was really helpful and compassionate. She checked me for Babinski which was negative, she also saw the weakness but found no abnormal reflexes. Also she noticed some fasciculation at my calf though muscle ultrasound. She prescribed some medicine for twitching which i did not take, because it was too strong and antiepileptic. She finally suggested to wait for two months and if this continues to repeat all the tests.
"There is nothing more you can do right now" she told me. I talked about my als fear and she said she would not go there at this time since there are no pyramidal signs (no idea what this is).
It has been a month since then and I try hard everyday to cope with symptoms and not be depressed.
I know something is wrong with my body, i feel it, and I actually see it but I try to continue with my life. Sit tight and wait has been the toughest part.
I get so many vitamins (even though I had no deficiencies) and i try to excersice even though the next two days is a pain and weakness torture.

Thank you in advance for your valuable time.
I apologize if It has taken long for you to read.
Any comment is welcome!
 

Clearwater AL

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Dimitra... ""There is nothing more you can do right now" she told me. I talked about my als fear and she said she would not go there at this time since there are no pyramidal signs."

There's not much we can do for you either with that. We're not doctors. You said you read "Read before
you post" Maybe you didn't understand what it says. You've posted many symptoms and tests that point away from ALS.

Going back to the first paragraph of my reply... ??
 

Dimitra_123

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Thank you for your kind reply.
I know you are not doctors but unfortunately you may had some relevant experience.
I guess all i wanted to know is if this sounds to you like als and if you would suggest going to another doctor?
And just a quick question when a limb starts feeling weak is there pain or increased weakness when tired or after exercise?
 

Clearwater AL

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Dimitra... you saw a professor neuro. "she said she would not go there at this time since there are no pyramidal signs."

It's not for us to debate her findings. I doubt anyone here would tell you your issues look, appear
or could maybe be ALS.

She may want to see you in a couple of months. To help your anxiety it would be best to log off
this site until then. To answer your question may only feed your anxiety more... then more questions
and it will go round and round some more. Then... ending up in the same place it is now.
 

affected

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We will not argue against the considered recommendations of doctors who actually get to do a clinical examination.
You know this as you have been reading here for months.
Please go back to your GP and let them guide you on what is next.
No reason to stay here at all.
 

lgelb

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If you have untreated scoliosis (even physio can be helpful), it can throw off your walking and standing. That in turn can lead to pain and/or twitching. So I would follow up with a specialist who can at least suggest exercises. I would also ask about a sleep study or video your sleep using your phone or laptop, so you can rule out visible unusual movement and breathing.

Best,
Laurie
 

MJT

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Dimitra, Nobody on this forum is a doctor. (I am an artist, so knowing that how valuable is my medical advice?) We only recount our experiences as ALS patients and caregivers. I happen to have scoliosis and have none of the symptoms that you describe. Please continue consulting professional doctors. I hope you find answers and that you feel better quickly. 💚
 
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