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Anjum nazir

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I have progressive atrophy of my right leg along with abdominal twitches and twitches in calf thighs and buttocks....my peroneal and calf muscle of right leg has withered...my mother and maternal aunt died of als....but my neurons are not ready to take me as a patient because they say you are working and moving and walking
....does that mean I should get 100 percent handicapped to be treated for als....can the weakness in als happen progressively and i also feel like nails are being inserted in my right leg who h is withering
....how can I save it please advise
 

Nikki J

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I have created this thread for you so you can discuss your symptoms. Please ask all question regarding your own health here.

Have you had an exam and an EMG? If you have not then you should be evaluated. You do not need to be paralyzed before a diagnosis is made. Early Riluzole treatment may slow it a little if it is ALS.

Your barriers appear to be location specific. I am not sure how much we can help. If your family doctor would advocate for you, might that help?

This link is old but if you scroll through the thread you will see a post recommending MND resources in India at that time https://www.alsforums.com/forum/do-i-have-als-als/35775-mnd-als-please-help.html#post392602
 

Anjum nazir

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Do i have als

I am a 45 year old female and am.experiencing strange symptoms abruptly foe the past 6.months.....I has some patches of neuropathic pain in my abdominal wall...some strange feeling ..I felt like scratching from inside my abdomen...these patches then became a continuum and i felt like insects crawling inside whole of my abdomen which extended to both of my legs....after some time I felt muscle twitches in my abdomen legs thighs and buttocks followed by atrophy of my peroneal and calf muscles of my right leg...I went to 3 neurologists one of whom gave me to park. 5 which helped the crawling insect feeling..I constantly feel pins and pricks in my hands and feet and can also feel the pricks in the leg which is atrophying....my other leg has also less muscle tone...the weakenining in both the legs begins from ankle at the distil end....
My mother died after 17 years being bed ridden.....was it muscular dystrophy or als we do not know. My mother's sister also died the same way after 17 to 18 years of being bed ridden...
Please tell me what am I suffering from....can i be treated ....is it Als or muscular dystrophy which is again a hereditary problem
Am wprriednsince 6 months.....please help me clear the things....what can it be....
 

Nikki J

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I ask you again please to stick to one thread- this one- for all your questions about your own health
Thank you
 
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ShiftKicker

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Ms Nazir-

Are you able to answer the questions Nikki has asked? It might be more helpful to start with those to create more discussion. She has also provided a link that contains some info on resources in India. Have you looked at those?
 

Nikki J

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I see you now say your relatives were not diagnosed. While surviving 17 years after onset of symptoms hsppens in ALS it is rare and especially rare for 2 people to do so even if related so you should consider the likelihood it is something else. There are many odd neurological diseases that are familial. You need to work with your doctors. We can not possibly diagnose you here
 

Anjum nazir

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Now i have been informed that it is progressive muscular atrophy which is again a type of mnd...is there anybody on the forum with the disease and are there any medications or cures for it
 

KarenNWendyn

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Progressive Muscle Atrophy is likely ALS with only lower motor neuron involvement. My neurologist told me that it usually evolves into ALS over time, meaning that in some people, the upper motor neuron findings come on much later. Autopsy specimens of brain and spinal cord if people who died of PMA usually show the same findings of ALS.

Pure PMA has a slightly longer lifespan than ALS. Disease management would be essentially the same.

I like to think of PMA as “ALS lite”.
 

Anjum nazir

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Lost a loved one
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I have both twitches and muscle wasting as well...I have lost consislderable fat or muscles on legs...but wasting usually followed severe pain in my lunar nerve whether in legs or in arms...right from pinky of foot through our the leg and pinky finger of hand throughout the arm followed by wasting if muscles and muscle twitches..
Before twitches I used to have some sore feeling in the abdominal wall. I feel the peripheral nerves of abdominal.wall got involved first followed by abdominal twitches...later muscle wasting and atrophy....I have read that mnd .can involve both motor and sensory nerves at times.. does anybody else have this experience...before wasting and losing muscles...
 

ShiftKicker

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From Nikki J
Have you had an exam and an EMG? If you have not then you should be evaluated. You do not need to be paralyzed before a diagnosis is made. Early Riluzole treatment may slow it a little if it is ALS.
Ms Nazir- have you had an emg yet? What were the results? It's important the members here have the whole picture in order to better understand.
 

Anjum nazir

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Diagnosis

Dear Nikki

U suggested me to undertake ncv emg which I did. I am posting the result of the test it I do not agree with the result as both of my legs are weakening ankle up... my feet have lost all fat ...an my heel of right foot pain s....twitches are there for the past of 8 months

Just tell me what did I do now
 

lgelb

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Re: Diagnosis

Anjum,

I do not see an attachment?

At any rate, whether you agree with the result is not the issue. The result is what it is. The question is how you will proceed to feel better knowing that you do not have ALS, if the result is negative.

Best,
Laurie
 

ShiftKicker

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Mod note: Merged threads

Anjum, please continue posting on your already existing and open thread. It is important for people to see all your information in one place to provide the best feedback.
 

Anjum nazir

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Messages
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Reason
Lost a loved one
Country
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Hello everybody
Hope all are fine....N fighting this devastating disease.....which forces us to.pack up our bags for other world

I have constant twitches in abdomen and legs for the past 9 months ....there is progressive weakness in first my first right leg and then in the left leg ...first in first and now progressing upwards. My ankles and peroneal alongwith calves are losing thickness constantly alongwith thighs...I have two small kids aged 10 and 5 years...am worried for them...I have uploaded my emg ncv reports....am sure I have the problem....please suggest what should I do....
 

ShiftKicker

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Anjum, the emg report has not been posted. Please try again.
 
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