EMG abnormal | MND being considered | long waiting period

Pooja Dhamor

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Hi, I am from India and my father (aged 48) started experiencing difficulty in lifting things this Feb/March 2021. This difficulty in doing normal things like buttoning, opening wrappers, signing, writing, combing, etc. kept on increasing gradually. Starting from August/September, we noticed a loss of muscle (diagnosed atrophy) in his arms, wrist and around elbows. This atrophy has now expanded around his hips as well. Physical examinations by doctors noticed twitching, but no loss in sensation in arms, feet or anywhere else in the body. Thankfully, there is no difficulty walking, speaking, eating, no slurred speech, etc.

EMG did not come out to be normal and showed site of involvement to be anterior horn cell. Prior to EMG, a few MRIs and other tests were run which were all clear. Post EMG, Immunofixation Electrophoresis (IFE Serum Quantitative) as well as a full body PET CT scan was suggested. After examining the reports, doctors have put him on Riluzole, antioxidants and riboflavinotherapy. However, they refused to label it as ALS yet and have suggested us to follow up in Feb (after 3 months from the diagnosis).

An odd incident here is that my father also faced hearing loss. From what I have heard and read, MND doesn't lead to hearing loss. The connection between hearing loss and other stuff seems to be confusing to the doctors here too.

I am adding EMG snapshots. Please let me know if you want me to add any other tests/more of EMG as well.

I'd really appreciate any leads on this. I really hope to find out that it is not ALS/MND/anything fatal. Also, I am not sure if this is the correct placeto ask this but our doctor suggested trying out this experimental drug called ibudilast 100 mg (it does not seem to be available in India, so I am trying to figure the process out) along with the aforementioned treatment.

Thank you!
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affected

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Hi I hope you get some definite answers soon but it sounds like they have decided this is 'probable ALS' meaning he doesn't possibly meet all the criteria for diagnosing ALS but they are pretty sure it is.
My reason for saying that comes from both the EMG result and starting him on Riluzole.

The hearing loss is nothing we know of as a connection to ALS so it is possible he has 2 things happening at the same time which does happen.

I'm sorry we can't really give more detail than the doctors, it must be hard to feel so close to a diagnosis.
 

Gnanam

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Dear sir am also india and I have same symptoms. Dr diagnosed possible als under Reluzole. If you free pls contact my number <number removed; will send to Pooja>
 
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Pooja Dhamor

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Jaipur
Thank you for the information! It has been difficult. If it is probable ALS since it doesn't meet the criteria for ALS yet, there's a likelihood that it might turn out to be something else/curable in near future, right? I'm sorry if I'm being nagging but I'm just being hopeful and trying to look for anything that might be curable.
 

lgelb

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There should be another table, that would be helpful to see. It has columns such as PSW and recruitment.

Is your dad a diabetic? Does he smoke?

Best,
Laurie
 

Gnanam

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If you got any medicine like ibudilast 100 mg pls let me know. I also need. You know very well in our India there is no als association and als clinic and care centre. Am also very struggleing past right months pls help
 

lgelb

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There is an association called MND India, that has a Web site. You can also use the search box that is on the top on every page here, and look for "India" across the site, since we have had other PALS from there.

Gnanam, feel free to start your own thread here for support.
 
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Pooja Dhamor

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Thank you for your responses. I am sorry for the delay in response because of the restrictions of not being a forum supporter.

To reply to Laurie's questions, my father is not diabetic, doesn't smoke and neither does it consume tobacco in any other form. I am also attaching the other table, if it can give more information - I could see recruitment column but not the PSW one in this table.

1638002153599.png


Thank you, everyone!
 

lgelb

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What you sent is the right table, thanks -- it is just notated differently than here.

Ibudilast is under study in ALS, but it has definite side effects and has not proved itself. Should your father indeed have ALS or a similar MND (not a given from this EMG, but certainly there is something going on -- any trauma, injuries or manual labor in his history?), I would explore more proven treatments and approaches.
 

Pooja Dhamor

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Thanks Laurie, there haven't been any injuries, nor does he have any history of manual labor. I'm not sure what do you mean by trauma - if it's long term stress, then yes, that's there.

I'll check the link containing info on more proven treatments, thank you so much!
 
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