Pooja Dhamor
Member
- Joined
- Nov 22, 2021
- Messages
- 10
- Reason
- CALS
- Diagnosis
- 10/2021
- Country
- IN
- State
- RJ
- City
- Jaipur
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!
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!