Pending neurologist visit, very worried about ongoing symptoms!

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Llfa

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Joined
May 27, 2016
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6
Reason
Learn about ALS
Country
Us
State
Ny
City
Syracuse
Hello,
I am a 44 y.o mom and wife.
I am writing to you to see if any of you can give me some kind of reassurance on what has been going on with me for the last 2 months.

I started having leg stiffness (both legs) to the point where it has been hard to walk, my muscles get fatigued and I need to sit down.

After that both my elbows started bothering me and both byceps and shoulders started getting the same fatigued sore feeling together with hips and thighs and both my hands started having the same feeling.

Dr. Sent me to rheumatologist who ruled out RA, Lyme lupus and inflammatory diseases.

He sent me back to my dr. Who checked for vitamin deficiency (slightly low D) so taking 50,000 iu a week.


My muscles enzymes were good, but my symptoms have not disappeared. My overall strength has diminished and dr. Said he didn't like what he was seeing and mentioned ALS.

He is sending me to Strong hospital in Rochester Ny to see a neurologist because he has at Loss on what's going on.

I am naturally very very thin and he has hard time to see if my muscles are atrophied, I have none😒.

My muscles started twitching too, they have never done that apart from eyelids.

Dr put me on cymbalta, maybe could be the culprit ? Also I have been having hand tremors.

Before all this started( about 10 days prior) I had a weird infection on side of the mouth that gave a swollen lip and was treated with partial antibiotic (partial because once pus was drained everything went away) and doc doesn't seem concerned that the 2 situations are related!
I am honestly very worried, my question are:
1) could ALS "attack " multiple muscles at a time? Byceps shoulders hands hips and thighs ? Not calves or feet.
In 2 months time?

Thank you so much for reading And I would appreciate any of your help to ease my worries.

Italian mom
 
I see no reason why the Dr mentioned ALS. What is this doctor's qualifications? MD, DO, chiropractor?
 
Mr. Mike,
Thanks for replying ,he is a Md..

When he mentioned ALS my heart skipped a bit, now I really am worried about it.

I was hoping for reassurance I guess and I asked maybe MS? And he told me it looks to me more of a NEuro motor disease.

Why would I have all these limbs attacked at once?
Also he said that creatinine ,ser was low at 0.6 mg/dL , anyone with ALS have this?

Any suggestions or anyone with a similar case?

Lidia
 
It really seems very unlike ALS. ALS starts in one area a hand or a foot and with speech usually and progresses from there. It does not have multiple sites starts together. And usually though not always it starts distally, meaning hand or foot and works inward / upward from there.

Infection can have some strange consequences and some antibiotics can cause neurological issues. What antiobiotic was it? Quinolone especially ( but not exclusively) have been found to cause problems
 
Mrs. Nikky,
It was amoxicillin , I am hoping that the weird infection has caused all this in my body. I was treated with prednisone too but the rheumatologist told me to stop since I didn't get any better after about a week on it. Very puzzling 😒

Do you think after 2 months in I would have already lost major function in my hands arms or legs or not necessarily if this is very early stage?

I hope not to offend anyone here.

Thanks
Lidia
 
It sounds more like fibromyalgia than ALS......and I'm no doctor. Interestingly, Cymbalta is the antidepressant of choice for fibro.

Try not to worry about it. The neuro will be able to tell if it has ANYTHING to do with your central nervous system.
 
So tomorrow is the day I see the neurologist, I am very nervous! My twitching have increased and my legs have been getting weaker! Also my arms and hands! Pretty scary stuff!

My doc did an mri of brain and discarded MS( I almost was hoping for that!) All my muscles enzyme are normal, I have a bad feeling about this that I can't shake off!

I wonder if she can tell me something definitive tomorrow, I do have muscle weakness and these twitching are real!

I was happy to find out the neurologist is actually an Italian dr so there won't be any language barriers.

Can the limb onset attacks legs and armsan both hands at the same time??
 
My creatinine serum is very low at 0.6 mg
Is this any thing to do with muscles?
Thank you
Lidia
 
I did the neurologist and emg today, everything was fine and fasciculations were recorded but all my muscles turned out ok.
Doc thinks whatever infection I had months ago triggered my symptoms, she will see me back in August to be on the safe side. I wanted to thank you all for your kindness and reassurance and for taking the time to answer my post!

Lidia
 
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