mthapa
Member
- Joined
- Aug 16, 2012
- Messages
- 16
- Reason
- PALS
- Diagnosis
- 07/2013
- Country
- IND
- State
- Mid Region
- City
- delhi
Hello Friends,
I am Mahesh Thapa, 35, from Kathmandu, Nepal. I was diagnosed Motor Neuron Disease (ALS)on 2003. I have difficulty in walking, speaking (unclear & Nasal voice but I can communicate), gripping & having problems like: cramping, fasciculation on muscle & tongue. I can stand but need support to walk. It is gradually limiting my physical mobility. I can walk few steps on my own. I have more problem in my hands where the loss of muscle is more than other part of body. actually I can't figure out loss of muscle in other parts of body except my hands & shoulder. I use on screen keyboard to type. I can work on computer for hours. I can sleep well. My blood pressure is normal, don't have any internal problems like: heart, lungs, kidney or respiratory system. I was good sportsman & never used alcohol, tobacco or any type of addiction throughout my life. still I am good player of chess at national level.
I don't use any supportive equipments like feeding tube or ventilation. I eat all types of food as normal people. I don't have digestive problem. I have gained around 10 kg weight since I diagnosed.
I have read many reports on internet that there is high chance of misdiagnosis in the case of ALS/MND. I am not satisfied with diagnosis of Nepalese doctors as my symptoms didn't increase accordingly to other ALS patients. I haven't rechecked up again since I diagnosed ALS on 2003. My MRI report of cervical spine was normal. EMG report had shown weakness in both upper & lower limbs.
These are my doubts:
:arrow: Initially I had problem swallowing food. I used to feel itching on inner part of throat while swallowing food which made me sneeze & food came out through nose. Doctors had asked that I will have to use feeding tube within 6 months. but I used Cetrizine 10 mg for few days & concentrated to stop sneezing while eating & since then I don't have any problem swallowing food after 10 years too.
:arrow: ALS/MND parents encounter respiration & lung problem within few years but I don't have such problem including any other internal problems.
:arrow: weight loss is common symptom among all forms of ALS/MND but I gained 10 kg since I diagnosed.
:arrow: my speaking ability is stable for few years.
I have stopped physiotherapy for 5 years, haven't used medicines like Multi vitamins, vitamin E, calcium or any other allopathic medicine for 4/5 years. I haven't used supplements, nutrients & medical check up since I diagnosed because of my financial situation. but my situation isn't bad comparing to other ALS/MND parents.
please suggest me, is there any chance of misdiagnosis in my case ? I read that some heavy metal infection can create same symptoms like ALS/MND. should I recheck again ? if yes, what types of tests should I do ? please feel free to provide suggestion & share experience.
I am Mahesh Thapa, 35, from Kathmandu, Nepal. I was diagnosed Motor Neuron Disease (ALS)on 2003. I have difficulty in walking, speaking (unclear & Nasal voice but I can communicate), gripping & having problems like: cramping, fasciculation on muscle & tongue. I can stand but need support to walk. It is gradually limiting my physical mobility. I can walk few steps on my own. I have more problem in my hands where the loss of muscle is more than other part of body. actually I can't figure out loss of muscle in other parts of body except my hands & shoulder. I use on screen keyboard to type. I can work on computer for hours. I can sleep well. My blood pressure is normal, don't have any internal problems like: heart, lungs, kidney or respiratory system. I was good sportsman & never used alcohol, tobacco or any type of addiction throughout my life. still I am good player of chess at national level.
I don't use any supportive equipments like feeding tube or ventilation. I eat all types of food as normal people. I don't have digestive problem. I have gained around 10 kg weight since I diagnosed.
I have read many reports on internet that there is high chance of misdiagnosis in the case of ALS/MND. I am not satisfied with diagnosis of Nepalese doctors as my symptoms didn't increase accordingly to other ALS patients. I haven't rechecked up again since I diagnosed ALS on 2003. My MRI report of cervical spine was normal. EMG report had shown weakness in both upper & lower limbs.
These are my doubts:
:arrow: Initially I had problem swallowing food. I used to feel itching on inner part of throat while swallowing food which made me sneeze & food came out through nose. Doctors had asked that I will have to use feeding tube within 6 months. but I used Cetrizine 10 mg for few days & concentrated to stop sneezing while eating & since then I don't have any problem swallowing food after 10 years too.
:arrow: ALS/MND parents encounter respiration & lung problem within few years but I don't have such problem including any other internal problems.
:arrow: weight loss is common symptom among all forms of ALS/MND but I gained 10 kg since I diagnosed.
:arrow: my speaking ability is stable for few years.
I have stopped physiotherapy for 5 years, haven't used medicines like Multi vitamins, vitamin E, calcium or any other allopathic medicine for 4/5 years. I haven't used supplements, nutrients & medical check up since I diagnosed because of my financial situation. but my situation isn't bad comparing to other ALS/MND parents.
please suggest me, is there any chance of misdiagnosis in my case ? I read that some heavy metal infection can create same symptoms like ALS/MND. should I recheck again ? if yes, what types of tests should I do ? please feel free to provide suggestion & share experience.