Do you think I may have ALS? thank you!

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Amy O

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hello everyone, i am new here and i would highly appreciate your opinion and time about my muscle waste.

i had EMG showing psw, fibs, poly and something with insertion activity (emg also says that muscles revealed abnormalities and denervation, and that clinical correlations are recommended).

my right leg became very rigid and spastic, unable to relax and i had trouble with walking. now i am walking fine but right leg is heavier than left one. later on i noticed twitching and wasting on my left hand. muscles on my right leg also developed wasting as you can see on photos.

also my breathing is very bad, i had CT scan and x ray of lungs, everything was okay. i had all the blood work done. MRI of spine and brain also fine. NO pinched nerve or tumor. i am scared i may have MND that starts with breathing issues.

EMG was done in Germany, i dont have a copy but abnormal findings were +1 some of them +2, and i dont clearly know what it means.

do you think it is concerning? please take a look at my pictures. does it look like wasting to you? can you please tell me how the breathing related ALS would show its symptoms? (because of my breathing issue, i can only walk one block then i have to sit down because of my leg and breathing).

i also have tightness around ribs and heaviness is dragging me down to sit. when this happens i am also bad-oriented and kind of confused.

thank you all so much. i appreciate everyones opinions!
 

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Nikki J

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Hi
we really can’t tell much by pictures and without the emg report we can’t know what muscles showed the abnormalities and the pattern to say how concerning it may be.

what did the doctors tell you? Where are you now? Germany or New Jersey? Did you have pulmonary function tests? What is next in the plan?
 

Amy O

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Hi
we really can’t tell much by pictures and without the emg report we can’t know what muscles showed the abnormalities and the pattern to say how concerning it may be.

what did the doctors tell you? Where are you now? Germany or New Jersey? Did you have pulmonary function tests? What is next in the plan?
thank you. I am in NJ Fort Lee. i had no pulmonary test. that happened while i was in Germany for 3 months.

Muscles :gastrocnemius R,Anterior Tibialis R , Vastus Lat and S1 Paraspinal.Right.

i dont know what my plan should be. i am scared looking at my muscles. i have not seen any doctors in US yet. just came back from Germany( my son is there in Uni)
what do you think about photos? any advice for me?
thank you
 

Amy O

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muscles with abnormal signs:may be this way its more helpful Nikki J ? gastrocnemius R s1-2 +1 fibs;psw+1;poly+1
Anterior Tibialis R l4-5. +1; +1; +1
vastus latR l2-4 +1; +1. +1
S1 paraspinal S1 increased +2; +2. +2
ty
i dont know how bad this looks...((
 

ShiftKicker

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It might be better if you actually posted what you are getting these results from for context.
 

Amy O

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thank you for reviewing my posting, unfortunately i dont have actual copy because i left germany before it was officially accessable.

this is what my son could find out so far from NP there. because i dont speak german he made notes and translated for me. he was told its not possible to access official report without me being there.

he was told to note this abnormal findings now in case i need to discuss it with my doctor here to have at least idea what is going on. in future i have to demand e-mail/fax version of results. i dont know how long it will take.

what do you guys think so far? how concerned should i be? thank you very much
 

KarenNWendyn

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Based on the limited information you’ve provided, it’s really hard to draw conclusions. Other than a heavy feeling in your leg and trouble breathing, it doesn’t really sound like you have failure. You said your walking improved, which goes against ALS. Did your doctors find any weakness on exam? Are you still short of breath?

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described.

We’re better at interpreting EMG results if you can actually provide a copy of the results. So that’s why we really can’t address your concerns based on this limited information. I would recommend you try to get your records from Germany and see a doctor in the US. If you’re still short of breath, you might be able to get some pulmonary function tests.
 

Amy O

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Ty.I will try to get my emg via Doctor may be.
I have no more rigidity in leg -that “improved “ , but i have wasting , may be not visible on photos.
i had no weakness at exam. no failure but as i said breathing is bad.


My concern is breathing and denervation on emg.i will do the test may be here again(emg) and for sure do breathing test as you suggested.

thank you again for your time. my last question would be, is it possible i could manifest breathing related ALS? (onset)?do not know exact name)

since i have no weakness and limb failure but have denervation ,wasting, had rigid right leg and breathing issue is the worst symptom so far.

Thank you all for help and your time.
you are amasing!
Amy
 

KarenNWendyn

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my last question would be, is it possible i could manifest breathing related ALS? (onset)?
It would be far more likely that your breathing issues are related to something else. Please see a doctor if you’re concerned.
 

Amy O

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i just searched little more on the website and found this, in one of the comments about EMG findings. it looks like it is concerning to have emg like mine.

i thought you would be honest with
 

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lgelb

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1) It is not helpful to list muscles that had abnormal results because any abnormalities are considered in conjunction with any normal muscles. That is how it is done. It is like showing the position of a speedometer without any numbers on the dial to speculate on what you have posted.

2) The fact that there are some numbers that are not "0" does not mean that you have ALS any more than having a headache means you have a brain tumor.

3) In the Northern NJ/NYC area, there are several academic medical centers with excellent neurology units. I would suggest that you make an appointment.
 

Amy O

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thank you Igelb!
i was just asking how serious it was . also i was asked about muscles that being checked.
i also uploaded photos of wasted muscles. i know you cant diagnose anyone , it was just question how concerned i should be.

i searched Dr.Scelsa in NYC. any idea how good he is? or has experience with him in past? or NJ would be better?

ty
Amy
 

Amy O

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hi again, i dont know if my posts are visible, i like to have advice about where to go.
New York mount sinai dr.Scelsa
Columbia als center or New Brunswick NJ.
anyone familiar with?
please answer if you have time
ty
Amy
 

Nikki J

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Columbia ALS out of those. I know some people have had issues with the personality of one of the doctors but they are clinically first rate
 

Amy O

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Columbia ALS out of those. I know some people have had issues with the personality of one of the doctors but they are clinically first rate
thank you Nikki, i called them and they need my emg. after they look at results they will call me to be seen . ( or not. depends how emg will look)
as it looks i need to have emg first. ah...
 
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