Danni1000b
Member
- Joined
- Jan 31, 2011
- Messages
- 14
- Reason
- Learn about ALS
- Country
- UK
- State
- Surrey
- City
- South Croydon
I posted this on the PLS forum but somebody kindly suggested I post it here instead: -
Hello Everyone
I am not sure if this is the right place to post so apologies in advance if it isnt.
I am posting on behalf of my husband. By way of background, he is a 29 year old policeman. Up until a few years ago he played Rugby twice a week, was an avid gym goer and rode 9 miles each way to work on his push bike.
About two years ago he started suffering from a limp and stiffness in his leg. He thought this came from a problem with his hip joint as he felt some 'crunching'. At the time he was seeing a chiropractor who said his hips were out of line and would manipulate them back into place. He would get some relief from this but it never lasted.
The symptoms started to get worse, the limping become more pronounced, he became clumsy (only noticable to me and him), his leg was very stiff, he developed problems (minor) with his bowels and bladder and muscle spasms in his legs at night (spasms in both legs although the other symptoms are only present in his right leg).
He went to his GP who referred him to a neurologist at our local hospital. She carried out various blood tests (all clear), MRIS (all clear), spinal fluid analysis (all clear) and nerve conduction studies (abnormal) and diagnosed Baclofen.
In the meantime my husband has now had to go onto light duties at work.
At Christmas she referred him to a neurologist in Queen's Square in London. Her referral letter said she 'was starting to wonder if this was Primary Lateral Sclerosis'.
We went to this appointment and had been left feeling bewilldered and anxious. We have no diagnosis. The consultant has said he thinks he has a nuerological condition affecting his upper motor nuerons but what it is, he doesnt know. He has having another MRI of the head and further nerve conduction studies and EMG(?).
He mentioned these were to rule out a rare form of MS that doesnt show up on MRI scans and something called Heritary Spastic Paraplegia although the main reason is to try and monitor any changes since his last tests.
He also wants the bowel and bladder problems to be invested further to see if there is a link because apparenty this does not really tie is with nuerological problems.
What has left us feeling so frustrated and scared is that his next appointments are not for a few months and we have in a round about way been told that we have to 'wait and see' and to me that translates as having to carry on watching him deteriorate with no diagnosis.
From only a brief look on this board it seems that it takes a long time to be diagnosed.
I don't know what I am asking really, just looking for any kind of hope/reassurance to cling onto. Does anyone know of a similar situation where somebody hasnt been diagnosed with something terrible? Are there nuerological disorders that are not life changing?
Thank you in advance.
Danielle x
Hello Everyone
I am not sure if this is the right place to post so apologies in advance if it isnt.
I am posting on behalf of my husband. By way of background, he is a 29 year old policeman. Up until a few years ago he played Rugby twice a week, was an avid gym goer and rode 9 miles each way to work on his push bike.
About two years ago he started suffering from a limp and stiffness in his leg. He thought this came from a problem with his hip joint as he felt some 'crunching'. At the time he was seeing a chiropractor who said his hips were out of line and would manipulate them back into place. He would get some relief from this but it never lasted.
The symptoms started to get worse, the limping become more pronounced, he became clumsy (only noticable to me and him), his leg was very stiff, he developed problems (minor) with his bowels and bladder and muscle spasms in his legs at night (spasms in both legs although the other symptoms are only present in his right leg).
He went to his GP who referred him to a neurologist at our local hospital. She carried out various blood tests (all clear), MRIS (all clear), spinal fluid analysis (all clear) and nerve conduction studies (abnormal) and diagnosed Baclofen.
In the meantime my husband has now had to go onto light duties at work.
At Christmas she referred him to a neurologist in Queen's Square in London. Her referral letter said she 'was starting to wonder if this was Primary Lateral Sclerosis'.
We went to this appointment and had been left feeling bewilldered and anxious. We have no diagnosis. The consultant has said he thinks he has a nuerological condition affecting his upper motor nuerons but what it is, he doesnt know. He has having another MRI of the head and further nerve conduction studies and EMG(?).
He mentioned these were to rule out a rare form of MS that doesnt show up on MRI scans and something called Heritary Spastic Paraplegia although the main reason is to try and monitor any changes since his last tests.
He also wants the bowel and bladder problems to be invested further to see if there is a link because apparenty this does not really tie is with nuerological problems.
What has left us feeling so frustrated and scared is that his next appointments are not for a few months and we have in a round about way been told that we have to 'wait and see' and to me that translates as having to carry on watching him deteriorate with no diagnosis.
From only a brief look on this board it seems that it takes a long time to be diagnosed.
I don't know what I am asking really, just looking for any kind of hope/reassurance to cling onto. Does anyone know of a similar situation where somebody hasnt been diagnosed with something terrible? Are there nuerological disorders that are not life changing?
Thank you in advance.
Danielle x
