Unusual beginning?

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Rd13

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Dear all,

I’ve been living in a nightmare for the past 10 weeks. It all started with a bad airway infection, a cough I couldn’t get rid off. Then one afternoon I was sitting, had a bad pain in my left wrist, my heart started racing and I fell to the right. I was confused and couldn’t even pick up my phone, it felt heavy. The 2 weeks that followed consisted out of a weaker left side of my body. Doctors couldnt find anything wrong.

After that I experienced attacks multiple times a day of a light headed feeling, while my head felt heavy as a bowling ball and then would not feel my legs/face/arma anymore but I would be able move them. Sometimes both sometimes one side. My headt would also race. A visit to the ER with bloodwork and cT came back negative, only a tachycardia.

The attacks became less, from daily to once every few weeks. Symptomps lasting were heavy legs, which is on and off. But I do habe a persistent weak feeling in my right arm and numbness. As well as a tstiff right ringfinged and foot. I can do everything but i feel weak in my right side. Sometimes I still have numb attacks in my left side too. My muscles ache throughout my whole body, especially after moving for even a bit. My neck feels stiff and hurts. I sometimes habe a palpation in my right triceps since a couple of days. I also have very bad headpains every day.

I am able to move my legs and arms although right side feels heavy/stiff/painfull. I have a buzzing/tingling sensation in hands and feet.

Mri of brain and spine are negative, which eules out MS. Neuro believes it to be FND but I am having major ALS anxiety. Any thoughts? Thank you in advance

I am an 29 year old female

To add: i’m still having a fast heartbeat often, or at least it feels that way. And my left hand shakes a lot when I squeeze something.
 

KimT

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I don't see ALS in what you've written. It might be helpful to see a cardiologist, although palpitations are very common and can be cause by many things such as caffeine, food that aggravates the vagal nerve, and anxiety.
 

ShiftKicker

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Hi there- please make sure to read here: Read Before Posting, as it explains what ALS is, and is not. You haven't posted anything that would give a doctor concern for ALS. It seems to me that this is some sort of post viral issue. Covid does cause neurological issues- if you look in any group or forum that handles Covid discussion, you will see many people reporting a variety of neuro symptoms.

I am sorry you are experiencing these issue- ALS does not present this way. I hope you are able to find some answers. Perhaps a doctor who is experienced with Covid/post Covid might be more helpful.
 

Rd13

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Thank you both for your replies. I did read the sticky and even though I understand the onset might be unusual I do have:
-muscle weakness. I am able to do everything but even holding a bottle of water feels heavy.
- fatigue
- muscle twitching in one tricep a couple a times a day
- my whole body feels shaky inside like an inside buzz. My lips for example shake when I open my mouth wide, same for my tongue (tremor?) and my jaw is stiff
- especially my left hand shakes when I hold something
- almost all my muscles hurt from walking stairs, are stiff and my right arm feels like it just can’t relax. It is also my right hand and right feet that feel stiff. Thats also the arm where my triceps sometimes has a tremble
- headaches everyday normal painkillers are not helping
- i feel like I can’t breathe deeply in and out
 

ShiftKicker

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However, you have also posted about multiple, non ALS symptoms- which does point to something else. Please have a read of the link again- it does contain a list of other conditions that share some of the same symptoms. While it must be frustrating, you will need to continue working with your doctors. Focusing on ALS may do you a disservice, as then people are trying to convince you of what it is NOT and this diverts from figuring out what it actually is that's affecting you.
 

affected

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While what you describe sounds scary and concerning, it doesn't resemble ALS.
I would suggest you go back to your doctor for an examination so that they can talk to you in context of what they find clinically, rather than what you are feeling.
Many people use words such as 'weak' without understanding the medical definition of clinical weakness. This is why it is so important to see a doctor.
I hope you find some answers soon.
 

Rd13

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Thank you all again. Tomorrow morning I have an appointment at the neuro and will ask for an emg.

I really don’t want to be annoying or what so ever but I’m just very scared. My right arms keep on feeling tight/stiff and it’s constantly tense. I don’t see the twitching but it feels like it. I’m still able to use it but the hand keeps on feeling stiff. Both arms/hands shake, especially when grabbing something tightly. Also my right leg keeps feeling stiff. According to others I dont walk differently although it feels that way.

Question: when everything started I had the feelinf to fall to the right side, as I felt like I was losing my balance towards the right side of my body. is this compareable to als falls?

Question: those attacks I had and sporadically still have of losing “touch” with my leg(s) as in extreme heaviness, doesnt that seem like losing the strength like you would have with als? They feel like spaghetti during those attacks. I am fully able to walk on them but they remain heavy

I also noticed my voice become more calm, and have a lot of hard muscus in my throat. Both which are very scary.

Thank you again in advance and for your time
 

lgelb

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No and no. Let us know how the exam/EMG come out.

If you have ongoing tachycardia, a calcium channel blocker or beta blocker is often used to address that very successfully -- a matter for your PCP.
 

Rd13

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Neuro update: neuro does not see any reason for an emg. Reflexes low to normal, no clinical weakness, no muscle detoration, normal heel and toe walk..
the tremors are symmetrical ans when i put my arms up or hold aomething. Also to her nothing points out to ALS.. still diagnosed as a functional neuro disorder. Have a come back appointment in 2 months.

Lets hope she indeed is right.. thank you all for answers!
 

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Honestly, the neuro is right.
I wish you a long healthy life, please let this go.
 

Rd13

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Hi everyone,

I've been to the neuro, again no clinical weakness so she does not want to do an EMG. I have pain all over my arms, like a terrible muscle pain even with the lightest things like walking around for a bit. I still have a stiff right ringfinger/that side it just feels weird and awkward.. My whole right arm is stiff and have muscle knots according to my PT. Also my right foot feels stiff and awkward, which sometimes goes through my whole right leg. I also experience the lump in throat and thick tongue/weird talking (for my perspective). My whole neck/jaw feels stiff.

I'm so afraid the doctor is biased because of my age (29) that it won't be ALS an does not want to do an EMG while there is no clear explanation for my hand and foot.. I'm still able to move them both but I did read on the forum that for some Pals it started with an unusual feeling in the hand/foot..

I'm so sorry to bother everyone that is actually dealing with ALS and appreciate every minute you put in the forum, I'm just worried because no doctor seems alarmed.. I don't want to have a late diagnose and lose these months just because multiple doctors are ignoring my wish for an EMG, I don't know what to do and the limb weirdness is just so scary.
 

lgelb

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There is not always a "clear explanation," but that does not mean that anything is seriously wrong. No one is over-reporting your strength bc of your age. I would stay with PT if it helps and live the healthy life others here cannot. If an EMG will really reassure you, someone will order one if you ask, but these are tough times for the seriously ill so please consider scarcity of these resources.

Being here is only feeding your fears. I am closing this thread. Please do not start another. Print it out for your mirror and there are many counseling options for health anxiety.
 
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