- Joined
- May 29, 2021
- Messages
- 26
- Reason
- Loved one DX
- Diagnosis
- 03/2021
- Country
- CN
- State
- NC
My mom was misdiagnosed with cervical spondylosis for almost 3 years for the symptoms only on her right arm, wrist and fingers (loss of strength and range of movement, finger stiffness, some atrophy, but no experience of any pain). She was finally confirmed with ALS in March this year. Within less than 2 months of diagnosis and treatment, her condition has taken a drastic turn
Below is a brief timeline of progression:
End of MARCH - Diagnosed with ALS. in addition to Riluzole, she was also put on Cyclophosphamide. She felt burning sensation through the whole body and suffered insomnia for a few days due to the bad reaction. This probably caused her anxiety. Her doctor then stopped Cyclophosphamide.
APRIL - Diagnosed with severe anxiety and put on medication Cymbalta and Lorazepam, started experiencing dry mouth, extreme fatigue
End of APRIL - had low fever for a day or 2, started feeling joint pain on whole body, muscle pain on both legs and stiff neck.
MAY - The leg pain persisted after her fever retreated and became so bad that the strongest dose of the pain medication didn’t help. She was brought to ER and was given a shot to ease the pain. During these days, she also experienced very painful leg cramps, numb feet and had fallen a few times. Dry mouth worsened and diagnosed with Sjogren Syndrome.
Now, she is experiencing short breath, her doctor recommended to use ventilator if it doesn’t improve after 3 months. After a period of medication, she has few cramps and little pain, but her feet are still numb. she needs to be on the cane and can not walk long. Her doctor said that all these leg pain, cramps and feet numbness are not symptoms or sign of of ALS progression, instead, are caused by her anxiety.
I don’t know what to make of her doctor’s explanation on the quick development, part of me want to believe it but the other part of me don’t want another mistreatment. Then what about Sjogren Syndromes? How come did this happen? Is it possible that these complications are caused by the medication? After 2 months of learning about ALS, I quickly realized that every PALS is different in terms of onset, symptoms, complication, progression and treatment. I know that we should trust our doctor in most cases, but getting any input or advice from PALS in this forum who has similar experience or some knowledge on the explanation would be very helpful in making informed decision and prepare for what’s ahead.
Thank you all in advance!
Below is a brief timeline of progression:
End of MARCH - Diagnosed with ALS. in addition to Riluzole, she was also put on Cyclophosphamide. She felt burning sensation through the whole body and suffered insomnia for a few days due to the bad reaction. This probably caused her anxiety. Her doctor then stopped Cyclophosphamide.
APRIL - Diagnosed with severe anxiety and put on medication Cymbalta and Lorazepam, started experiencing dry mouth, extreme fatigue
End of APRIL - had low fever for a day or 2, started feeling joint pain on whole body, muscle pain on both legs and stiff neck.
MAY - The leg pain persisted after her fever retreated and became so bad that the strongest dose of the pain medication didn’t help. She was brought to ER and was given a shot to ease the pain. During these days, she also experienced very painful leg cramps, numb feet and had fallen a few times. Dry mouth worsened and diagnosed with Sjogren Syndrome.
Now, she is experiencing short breath, her doctor recommended to use ventilator if it doesn’t improve after 3 months. After a period of medication, she has few cramps and little pain, but her feet are still numb. she needs to be on the cane and can not walk long. Her doctor said that all these leg pain, cramps and feet numbness are not symptoms or sign of of ALS progression, instead, are caused by her anxiety.
I don’t know what to make of her doctor’s explanation on the quick development, part of me want to believe it but the other part of me don’t want another mistreatment. Then what about Sjogren Syndromes? How come did this happen? Is it possible that these complications are caused by the medication? After 2 months of learning about ALS, I quickly realized that every PALS is different in terms of onset, symptoms, complication, progression and treatment. I know that we should trust our doctor in most cases, but getting any input or advice from PALS in this forum who has similar experience or some knowledge on the explanation would be very helpful in making informed decision and prepare for what’s ahead.
Thank you all in advance!