Joined
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47 Posts
first let me just say thank you for the happy birthday that i received by pm
sorry it took so long to say thanks but i dont visit the site often and i keep forgetting how to start a new thread, in fact i desperately wanted to post after my last visit to st thomas in sept but couldnt work it out
anyway
wnt to st thomas in sept and told that subsequent bloods suggest i dont have aps as previously told,and that no need to see me again but might need to see a neuro to check for poss distonic reactions
saw neuro but he didnt pay much attantion to the thing that i had been reffered for which is when my arm and hand twist and lock accompanied by pain and pins and needles
he did however listen to a very long list of all the things going on since 2004 and he said he thinks i have cfs and narcolepsy
i have been tested for narcolepsy twice and feel like im going round in circles
had local res meeting at last at old gps and cant be bothered to take that any further even though not happy with outcome
these are the thingsthat some specialists say i have but then it always gets changed later
me , fibro, aps, sjorgens, thoracic outlet syndrome, narcolepsy, distonia
as far as the gps are concerned, every time they get a letter saying it is not what they previosly thought, their additude is
thats good you dont have that so you are ok
it is very tiring keep going to gp and whinging so mostly i dont bother
at the moment i am going to appeal to lea as they tuned down request for assesment of sen for son with aspergers.
this is long proccess with lots of paperwork and i dont have access to printer and sometimes i cant type due to what were being called distonic reactions but now have no name as neuro did not comment on them one way or other and says he doesnt need to see me again
cannot hand write at all as as soon as i try hand goes into spasm
eventually got some dla at appeal but dont feel got correct award
nothing for mobility and only lower rate care
so back to no diagnosis and no enegy to try to persue one, and still dont think any one who sees me at an appt appreciates that back at home i am often completely unable to carry out even simple tasks
sorry to have gone on for so long but i have been wanting to get it off my chest
have written to dr d cruz in nov but swore that would be the last time i tried to write a letter by hand as i went into spasm very badly very painfull and brought on fatigue big time
have left a couple of messages on lupus nurse phone too
she says i should grt tested for ms but neuro thinks no need
sorry it took so long to say thanks but i dont visit the site often and i keep forgetting how to start a new thread, in fact i desperately wanted to post after my last visit to st thomas in sept but couldnt work it out
anyway
wnt to st thomas in sept and told that subsequent bloods suggest i dont have aps as previously told,and that no need to see me again but might need to see a neuro to check for poss distonic reactions
saw neuro but he didnt pay much attantion to the thing that i had been reffered for which is when my arm and hand twist and lock accompanied by pain and pins and needles
he did however listen to a very long list of all the things going on since 2004 and he said he thinks i have cfs and narcolepsy
i have been tested for narcolepsy twice and feel like im going round in circles
had local res meeting at last at old gps and cant be bothered to take that any further even though not happy with outcome
these are the thingsthat some specialists say i have but then it always gets changed later
me , fibro, aps, sjorgens, thoracic outlet syndrome, narcolepsy, distonia
as far as the gps are concerned, every time they get a letter saying it is not what they previosly thought, their additude is
thats good you dont have that so you are ok
it is very tiring keep going to gp and whinging so mostly i dont bother
at the moment i am going to appeal to lea as they tuned down request for assesment of sen for son with aspergers.
this is long proccess with lots of paperwork and i dont have access to printer and sometimes i cant type due to what were being called distonic reactions but now have no name as neuro did not comment on them one way or other and says he doesnt need to see me again
cannot hand write at all as as soon as i try hand goes into spasm
eventually got some dla at appeal but dont feel got correct award
nothing for mobility and only lower rate care
so back to no diagnosis and no enegy to try to persue one, and still dont think any one who sees me at an appt appreciates that back at home i am often completely unable to carry out even simple tasks
sorry to have gone on for so long but i have been wanting to get it off my chest
have written to dr d cruz in nov but swore that would be the last time i tried to write a letter by hand as i went into spasm very badly very painfull and brought on fatigue big time
have left a couple of messages on lupus nurse phone too
she says i should grt tested for ms but neuro thinks no need