Hi Paul, I have seen all of your videos. Am I correct in thinking that the last one was where you said that you where quite happy that it was all in your head, or have I watched them in the wrong order?
Hi mike I have made quite a few videos since that one. The all in my head video was me trying to be funny! It looks as if I am getting near a true diagnosis at last. I have a clinical diagnosis of Lyme disease.
I saw one consultant - didn't say a word to me - sat and read my notes and then got up and left the room for 20 minutes and then said 'I'll make an appointment for you to see a neuro surgeon' - was ushered out of the room by a nurse - the next consultant was also extremely rude and has done nothing.
So I am left in the same state - nothing done.
People who can pay for private tests have such a differnet experience.
I hate to put a downer on things but I view this hospital with extreme suspicion.If they're unwilling to give you more than a cursory glance during your appointment itself, why the apparent interest in keeping you there as an inpatient when they are already dismissive as to whether your symptoms are even neurological?If you do go there, make sure you have backup- someone MUST stay with you to make sure you're not sectioned and have legal backup just in case.
Hi paul,my partner has experienced almost identical symptons to you which started in february this year.He has been on clonazepan for the jerking for months which has helped but recently have started again, has wallking an balance problems.He has been in 2 london hospitals Still no diagnosis.Have you had a sleep study as they have found he has low oxygen levels for long periods during the night..Lets hope they find a diagnosis for you and my partner.
Hi Paul - glad to hear you have moved to a bungalow that makes life a bit easier for you.The trip to London sounds a total challenge and I am impressed you did it at all!!
i am so sorry to hear you had such a distressing appointment. i cannot understand these attitudes nor accept them. I am glad he is at least going to test you further and pray it will show up something definitive for you,
It IS positive news, Paul. You may be a square peg in a round hole at the moment but they are taking you seriously now.I hope they see you soon and give you better news. You are progressing through towards treatment/diagnosis even though the doctors need to be much better at communicating with you. Best wishes, Margaret
Hi Paul, it's great to hear from you again. I'm shocked at the way you've been treated by these neurologists. Don't give up. Hope you enjoy your new home.
Sorry to hear about your story. I am hoping to be a Neurologist so I can actually help people and make a difference.
ResistanceAlpha 2 years ago
Make a written complaint about the Neurologist in London.
It's discraceful people who are healthy and wealthy treat people less fortunate with disrespect when they are meant to be trained to be compassionate!
Was this at Queen's Square per chance?
luminescentfeeling 3 years ago
@luminescentfeeling that sounds ominous - I am off to Queens Square soon!
louloutinkerbelle 6 months ago
Hi Paul, I have seen all of your videos. Am I correct in thinking that the last one was where you said that you where quite happy that it was all in your head, or have I watched them in the wrong order?
Best Wishes
Mike
5thjune 3 years ago
Hi mike I have made quite a few videos since that one. The all in my head video was me trying to be funny! It looks as if I am getting near a true diagnosis at last. I have a clinical diagnosis of Lyme disease.
kaazoom 3 years ago
Hi Paul,
What is it with these people?
I saw one consultant - didn't say a word to me - sat and read my notes and then got up and left the room for 20 minutes and then said 'I'll make an appointment for you to see a neuro surgeon' - was ushered out of the room by a nurse - the next consultant was also extremely rude and has done nothing.
So I am left in the same state - nothing done.
People who can pay for private tests have such a differnet experience.
Love to you!
Joss
deadgirldreaming 4 years ago
I hate to put a downer on things but I view this hospital with extreme suspicion.If they're unwilling to give you more than a cursory glance during your appointment itself, why the apparent interest in keeping you there as an inpatient when they are already dismissive as to whether your symptoms are even neurological?If you do go there, make sure you have backup- someone MUST stay with you to make sure you're not sectioned and have legal backup just in case.
neelubird 4 years ago
Can you give me any reason for your suspicion? i would be interested in what you know. Please feel free to pM me if you want to. Paul
kaazoom 4 years ago
Hi paul,my partner has experienced almost identical symptons to you which started in february this year.He has been on clonazepan for the jerking for months which has helped but recently have started again, has wallking an balance problems.He has been in 2 london hospitals Still no diagnosis.Have you had a sleep study as they have found he has low oxygen levels for long periods during the night..Lets hope they find a diagnosis for you and my partner.
dr3amed 4 years ago
Hi Paul - glad to hear you have moved to a bungalow that makes life a bit easier for you.The trip to London sounds a total challenge and I am impressed you did it at all!!
i am so sorry to hear you had such a distressing appointment. i cannot understand these attitudes nor accept them. I am glad he is at least going to test you further and pray it will show up something definitive for you,
love Linda
gregcrowhurst 4 years ago
It IS positive news, Paul. You may be a square peg in a round hole at the moment but they are taking you seriously now.I hope they see you soon and give you better news. You are progressing through towards treatment/diagnosis even though the doctors need to be much better at communicating with you. Best wishes, Margaret
oldshoremore 4 years ago
Hi Paul, it's great to hear from you again. I'm shocked at the way you've been treated by these neurologists. Don't give up. Hope you enjoy your new home.
Best wishes,
Jon
Englander72 4 years ago
good to see you again. sorry to hear you are having such a rough time with doctors
nikitababy1983 4 years ago