hopeagainsthope
Member
- Joined
- Feb 11, 2016
- Messages
- 24
- Reason
- DX UMND/PLS
- Diagnosis
- 03/2016
- Country
- UK
- State
- UK
- City
- England
Hi everyone, I just wanted to see if this is the correct place to post? I have been extensively tested in the UK for ALS. EMG clean, all other testing normal. I have had two neurologists give the same opinion and the findings are "Spastic Paraparesis, cause unknown".
You will see from my DIHALS posts previously that I have all sorts of weird stuff going on, so I won't go through it all again
I asked if this maybe PLS and the last neuro said he had only known one case in his 20 years, but did not say no. He is referring me back to the NHS and recommend 6 monthly reviews.
So, I am not going to know much for a while and just have to watch and live as best as possible each day.
I understand it could progress to ALS, hence the testing periodically. There is no history of Spastic Paraparesis in my family line.
I just wondered if this is the right place to "hang out" and is it a shared experience that Spastic Paraparesis is just this and usually just progresses on relentlessly,but slowly? Does it ever reverse? My symptoms appear to have been rather fast moving over the year and I would say each day I feel a bit weaker. Any thoughts would be appreciated and do let me know if I don't belong here,
You will see from my DIHALS posts previously that I have all sorts of weird stuff going on, so I won't go through it all again
I asked if this maybe PLS and the last neuro said he had only known one case in his 20 years, but did not say no. He is referring me back to the NHS and recommend 6 monthly reviews.
So, I am not going to know much for a while and just have to watch and live as best as possible each day.
I understand it could progress to ALS, hence the testing periodically. There is no history of Spastic Paraparesis in my family line.
I just wondered if this is the right place to "hang out" and is it a shared experience that Spastic Paraparesis is just this and usually just progresses on relentlessly,but slowly? Does it ever reverse? My symptoms appear to have been rather fast moving over the year and I would say each day I feel a bit weaker. Any thoughts would be appreciated and do let me know if I don't belong here,