dvjcool
New member
- Joined
- Jun 13, 2016
- Messages
- 7
- Reason
- Loved one DX
- Country
- IND
- State
- somewhere
- City
- somewhere
Hello friends
My father was diagnosed with MND in April 2016 having weakness in hands and diaphragm.
He later also tested positive for Lyme's and was given doxy. We saw some improvement but then his condition started getting worse. In August he had respiratory failure and was on ventilator for about 2 months. Later he recovered and was able to breath comfortably in room air but using bipap/o2 at night. . He also started going on long walks (2-3 km). Docs also started suggesting this could be Lyme but all tests came negative this time.
In Jan 17. He caught viral,had a weak cough reflex and again was ventilated in Feb 2017. Surprisingly, we found he has HCV with a high viral load (this is unexplained as he never had blood transfusion). He is on anti hcv therapy now. He is off ventilator and is going on long walks. But using bipap at night.
We had his USG done in May 17 and right hemidiaphragm was paralysed. However when usg was repeated in July 17, both L and R hemidiaphragms were moving. We have referred his case to several leading hospitals and neurophysicians but all are confirming MND but are also agreeing that he has partly improved.
Also his symptoms are limited to arms, hands and diaphragm only. There have been no bullbur signs or weakness in any other body part. Although EMG/NCS has confirmed damagenin legs and trunk also in April 16.
This is very confusing and troubling as we don't want to miss treating any treatable condition. Can anyone guide us if they have come across any such case / any doc or institute who can help us. I shall be willing to send all medical reports by email.
Look forward to hear.
Regards
Digvijay
My father was diagnosed with MND in April 2016 having weakness in hands and diaphragm.
He later also tested positive for Lyme's and was given doxy. We saw some improvement but then his condition started getting worse. In August he had respiratory failure and was on ventilator for about 2 months. Later he recovered and was able to breath comfortably in room air but using bipap/o2 at night. . He also started going on long walks (2-3 km). Docs also started suggesting this could be Lyme but all tests came negative this time.
In Jan 17. He caught viral,had a weak cough reflex and again was ventilated in Feb 2017. Surprisingly, we found he has HCV with a high viral load (this is unexplained as he never had blood transfusion). He is on anti hcv therapy now. He is off ventilator and is going on long walks. But using bipap at night.
We had his USG done in May 17 and right hemidiaphragm was paralysed. However when usg was repeated in July 17, both L and R hemidiaphragms were moving. We have referred his case to several leading hospitals and neurophysicians but all are confirming MND but are also agreeing that he has partly improved.
Also his symptoms are limited to arms, hands and diaphragm only. There have been no bullbur signs or weakness in any other body part. Although EMG/NCS has confirmed damagenin legs and trunk also in April 16.
This is very confusing and troubling as we don't want to miss treating any treatable condition. Can anyone guide us if they have come across any such case / any doc or institute who can help us. I shall be willing to send all medical reports by email.
Look forward to hear.
Regards
Digvijay
