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MEP86

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I’m so sorry to be posting here, I just feel so nervous and can’t get into the neuro for a few months. Thank you for taking time to read this.

I have had muscle weak in my right arm since November to the point it’s hard to lift my arm to brush my hair. I now have it in my left arm as well, also in my knees. They feel like they are going to buckle.

I have muscle twitches in my left leg and they are now spreading all over my body. They are constant and don’t stop.

My jaw is SO sore and it’s hard to chew. I’ve only been eating soft foods. Also I had a day where I was unable to swallow.

Another thing is breathing is very difficult for me. I can barely walk up a flight if stairs and I’m completely out of breath.

This morning I tried to grib my bedcover to pull over me, and was unable to do so.

All these symptoms have shown up in the last three months. Does it sound like ALS to you? Thank you so much for taking time to help me.
 

Nikki J

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This sounds too all over to be ALS and a sore jaw doesn’t sound like it either. You also say feels like. In ALS that is not what happens we don’t feel we just fail.

What does your pcp say ? If they confirm weakness they can expedite a referral and they can also order breathing tests.
 

MEP86

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Thank you for replying Nikki! My doc sent in a referral to the neurologist but didn’t say much else. Looking for a new doc now as my current one hasn’t been too helpful.

Is breathing difficulty a sign in ALS at the beginning? Also aim so concerned because of the muscle weakness
 

MEP86

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I am also experiencing back pain as well
 

KarenNWendyn

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How old are you? Age makes a difference in terms of what diagnoses are on the table.

E.g. if you’re in your 60’s or older, I’d be concerned about something called polymyalgia rheumatica. Another concern at any age would be thyroid disease, and also an inflammatory myopathy.

As Nikki says, the time course for these symptoms appearing and also the sore jaw point way away from ALS.

Step one is to see your PCP. You need a good exam of muscles and joints and you need some lab tests which should include ANA, RF, TSH (thyroid), CBC, ESR (sed rate), and CPK (a muscle enzyme test).

Depending on what, if any, lab abnormalities show up, and your physical exam, it may be appropriate for your PCP to refer you to a rheumatologist.
 

MEP86

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Thank you for all the responses. I’m 32 female
 

MEP86

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Thank you Karen and Nikki. You have helped ease my mind and have been so kind
 

MEP86

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Worsening symptons

Thank you for taking time to read this. I posted a few weeks back, and am getting more worried as symptons are getting worse.

I’m a 32 year old Female.
I had extensive blood work done as well as a brian MRI and spine xrays and everything came back clear. I am waiting for my neurologist apt but it’s a month wait. I’m wondering if you guys could tell me what you think.

-my prp told me that my reflexes were brisk
- I have muscle twitches all day and night that don’t stop all over my body
- my right and left hand are having a hard time with grip
- my arms and legs are so sore, the muscles feel as if they are burning and very stiff
- I can hardley lift anything with my left arm
- having a hard time walking up stairs
- experiencing jaw pain, my jaw gets very sore when eating

Since everything else came Back clear, I’m getting very nervous
 

ShiftKicker

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Mod note- merged thread with original open thread. MEP, if you still could keep posting here on your original thread, it helps keep all posting info together and helps members here see the entire picture.
 

MEP86

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Thank you so much. Any insight would be greatly appreciated
 

lgelb

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As others have said, this doesn't seem like ALS.

Did your PCP order all the blood tests that Karen mentioned?
 

MEP86

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Yes my pcp ordered those blood tests and all came back clear. Even with my worsening symptoms, do you think it sounds like ALS?
 

Nikki J

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Your pcp said brisk reflexes. That is a common finding and frequently normal. What else did they find? With the degree of compromise you report there should have been many more things. It does not take a neurologist to detect significant clinical weakness for example

I still think this is going to be something else. Google seems to love ALS but there are many many more things that cause weakness and the timing and sensory symptoms are not what we see with ALS
 

MEP86

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Thank you Nikki for writing back. My pcp didn’t test anything regarding my strength which looking back is strange. He checked my balance and reflexes. And than referred me to neurologist.

Has anyone felt arm weakness/soreness/burning? I feel it so bad in my left arm, and I do feel it in my right arm and legs as well. It’s been getting progressively worse since November.
Also I’m starting to sound naisialy while talking and my nose feels as like it’s opening to my throat.

I guess I’m just feeling worried because so many things have been ruled out there’s not much more it could be?
 

Nikki J

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There are many things more it could be. Things you have never heard of probably.

I don’t feel weak at all but all my extremities are weak. I have no soreness and no burning. This is usual for ALS. Hard as it is you need to wait for the neuro. If you feel new symptoms go back to the pcp
 
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