BeckyUK
Member
- Joined
- May 10, 2010
- Messages
- 27
- Reason
- DX UMND/PLS
- Diagnosis
- 05/2010
- Country
- UK
- State
- UK
- City
- Sheffield
Hi,
I am new to the forums but have been viewing for some time since my diagnosis was underway, but now I feel completely confused after my latest neuro appointment. Grateful for any insights you may have.
I have been seeing my neuro for around 2 years now and have undergone the usual battery of tests. I have positive Babinski, clonus in both ankles and hyper-reflexia along with spasticity in both legs. I have had MRI scans and lumbar punctures to rule out MS, all the usual blood tests for Lyme disease and B12 deficiency and have had the genetic tests for HSP. All have come back negative.
At my last neuro visit I received the news that there was only one set of tests left to try but that they didn't feel that it was in my best interests to carry out the tests. A positive result would leave me labelled with an incurable illness and a negative result would mean that they had no idea what was wrong with me. The neuro feels certain I have PLS but there is no point in confirming this until my symptoms need treatment with Baclofen. Until then he wants me to carry on in blissful ignorance as he thinks it would be best all round. He advises that as I am young (38 years) the illness may progress slowly and I could manage for years without a diagnosis. He has said he will see me again in 9 months time but to give him a call if my symptoms worsen.
Has anyone else experienced this from their neuro? He seems to think that not knowing is the best thing for me but I'm not so sure. In the meantime I'm having to have a Occupational Health Assessment at work as my balance issues and inability to climb even one set of stairs is starting to affect my work, but my neuro will only say that I have 'spastic paraparesis of unknown cause'.
I am new to the forums but have been viewing for some time since my diagnosis was underway, but now I feel completely confused after my latest neuro appointment. Grateful for any insights you may have.
I have been seeing my neuro for around 2 years now and have undergone the usual battery of tests. I have positive Babinski, clonus in both ankles and hyper-reflexia along with spasticity in both legs. I have had MRI scans and lumbar punctures to rule out MS, all the usual blood tests for Lyme disease and B12 deficiency and have had the genetic tests for HSP. All have come back negative.
At my last neuro visit I received the news that there was only one set of tests left to try but that they didn't feel that it was in my best interests to carry out the tests. A positive result would leave me labelled with an incurable illness and a negative result would mean that they had no idea what was wrong with me. The neuro feels certain I have PLS but there is no point in confirming this until my symptoms need treatment with Baclofen. Until then he wants me to carry on in blissful ignorance as he thinks it would be best all round. He advises that as I am young (38 years) the illness may progress slowly and I could manage for years without a diagnosis. He has said he will see me again in 9 months time but to give him a call if my symptoms worsen.
Has anyone else experienced this from their neuro? He seems to think that not knowing is the best thing for me but I'm not so sure. In the meantime I'm having to have a Occupational Health Assessment at work as my balance issues and inability to climb even one set of stairs is starting to affect my work, but my neuro will only say that I have 'spastic paraparesis of unknown cause'.