speech issue and twitching all over the body. my worry is at peak as I have special needs child

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Meenu

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sorry for long post. I am from India. female 28Y .I started having issue since 3 years back around jan 2018 . first started with weak bladder and random sharp pain all over the body(lasting for few seconds). did MRI with contrast and CT scan. came back normal. got married soon after that.symptoms kept on increasing as shortness of breath during talking, occasional slurring like saying butter for better and increased urinary leakage with eye floaters. after one year around jan 2019 did nerve conduction study which came back normal. got pregnant quickly and gave birth to special needs child. during pregnancy there was no symptoms. after pregnancy, symptoms kept on getting worse like weakness on both hands(fingers and toes),random muscle twitching all over the body(2 to 5 twitches ) especially hands and legs occasionally stomach. even starting saying wrong words like 20 to 25 times a day. occasional shoulder blade pain,numbness in toes, worst fatigue but still walks fine and use hand fine but my fingers have been thin. sharp pain lasting few seconds in random place still there for past 3 years..recently dexterity has been decreased on both hands..I fear its ALS, my husband left us after my son diagnosis. my fear is all time high thinking my son future if it happens to be ALS.Could it be ALS? I need to fight for my son. I can fight anything cancer.not ALS. I have nobody to take care basically my parents are already too old. I have arrange for baby sitter even to go for EMG.
 

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Hi Meenu,

I am sorry to hear of your problems. They do not sound like ALS to me. I suspect at least part of it is insufficient sleep. Eye floaters, which are usually not a problem, should be checked by an ophthalmologist to make sure, and bladder issues by a urologist. Even video consultations can help rule out some issues. The rest of what you describe can be tracked by your physician but does not seem worrisome.

Dealing with your son with special needs cannot be easy, and so you might also want to undertake counseling to help you cope.

Best,
Laurie
 

Meenu

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Thanks for ur reply Laurie. twitching and toe and finger weakness make me so anxious which started pretty recently.i keep thinking about my son future if its ALS. I don't think I worry much about me.just son being alone in the orphanage and treating him badly keep flashing before my eyes. sorry for the all the vent.
 

Meenu

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Newly diagnosed with progressive bulbar palsy. feel like my life has ended. how am I going to secure future for my special needs son. clean EMG but showing UMN signs.neurologist has been blunt it might progress into ALS in few months. I am just 28 years old with no family history. am going to have second opinion tomorrow.Clean MRI brain and spinal.why god is so cruel.just contacted my ex husband, informing him about my condition hoping he would take my son in. highly doubt he would. sorry for all the vent.i feel envy when I see others happy. I have never been this jealous.
 

Bestfriends14

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Hi Meenu,

I'm so very sorry to hear about your diagnosis. I agree to get a second opinion. I really do not know much about PBA, but have read that it affects speech, swallowing etc and continues to worsen over time. Please let us know what they say as it is important to get that second opinion. Please post diagnosis results when you get them. Again, I'm so sorry. Hugs to you.
 
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lgelb

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PBP onset is typically 50's-70's, and again your picture is far from typical, e.g. much slower (3y prodrome) than we would expect in PBP. I agree that a second and maybe third opinion is very important. I would have expected a spinal tap, that you did not have, and abnormal MRI findings (in advanced studies, not sure what you had), whereas you had a normal MRI.
 
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Meenu

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Hi. 28 years old Female from India.Got a second opinion from another leading neurologist. he said, I am too early in the diagnosis stage but he is kind of sure it is ALS(clinically probable). there was subtle bicep twitching which I kind of unaware till he pointed that to me. he repeated EMG on all four limbs including the shoulder. there was an abnormality on the left side bicep. there isn't clinical weakness as of yet. anybody was oblivious to twitching till neuro pointed that out?. now I see bicep twitches almost all the time, my twitches are like one jump in one place, somewhere else a few jumps, biceps and palm (left side) twitch seem to be constant. there is wrist atrophy also.at least last neuro diagnosed me with PBP. now the worst news is confirmed. my mind is all over the place.is there any separate sub-forum for young PALS.I would like to see their struggle, hope, and progression.I think that would help other young PALS
 

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Meenu, I moved this to your last thread as many features don't fit and you do not report a definitive second opinion. If you could post the latest EMG with your details obscured, that would be helpful.
 
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