Aa
Appointment with neurologist
Hi
I was wondering if any of you limbo landers have ever been asked to take someone along to a neurological appt' that knows you really well so that they can ask them questions about you ? (with my permission of course)
It seems a very odd request to me and l've no idea what they want to ask so l wouldn't know who to take.
I'm a newbie to this site but l have suffered with symptoms like MS/FMS for 6 years without a diagnosis. I recently suffered a very bad 'relapse' after going away on holiday to Egypt last December which left me unable to walk very far at all and it has taken about 6 weeks to get back to what l call normal. I was prescribed Baclofen after a little bit of pushing with my doctor and that seems to have helped a lot, has anyone else used this?
Thanks in advance for any replies
De
I was wondering if any of you limbo landers have ever been asked to take someone along to a neurological appt' that knows you really well so that they can ask them questions about you ? (with my permission of course)
It seems a very odd request to me and l've no idea what they want to ask so l wouldn't know who to take.
I'm a newbie to this site but l have suffered with symptoms like MS/FMS for 6 years without a diagnosis. I recently suffered a very bad 'relapse' after going away on holiday to Egypt last December which left me unable to walk very far at all and it has taken about 6 weeks to get back to what l call normal. I was prescribed Baclofen after a little bit of pushing with my doctor and that seems to have helped a lot, has anyone else used this?
Thanks in advance for any replies
De
Hi.
On reading this post it brought flashbacks for me.
I was diagnosed with MS 12 years ago, however the neuro who diagnosed me retired and passed me on to someone else.
I was under him for 6 years, only seeing him once every year for about 10 minutes.
So 10 minutes for 6 years is one hour off his time , and one hour off my time.
I then started to question my diagnosis off MS, as i was getting skin problems.
I then phoned his secretary and got an appointment where i put this to him, and all the way through he wasnt talking to me , he was talking to my mum, and asking her questions, which i thought was strange, but i didnt mind as i am close to my mum, and she has seen me sick.
The neuro did some further testing, which was right outside of the pyramid, and left me reeling, with tests for Porphria, and HIV.
I tested negative for these, as i new i would, but he wouldnt give me the testing i wanted, and said i had abnormal illness behaviour.
Once this went on my medical records, i have never been taken seriously, and whenever i have been poorly have been fobbed off royal.
I would definately take a recorder, to tape the conversation, and iff he has nothing to hide then he wont mind.
I would sit back and try and see where this neuro is going, and that is by listening to the questions he asks your friend.
Also take a written statement, with all your symptoms on , dates off when they happened and the duration they lasted.
I find neuros ask you a question, then turn the question around, and ask it you in a different way to see if they still get the same answer.
I hope you get treated with the dignity, that patients should get treated, and i wish you well for your neuro appointment.
Good Luck
Nicola
On reading this post it brought flashbacks for me.
I was diagnosed with MS 12 years ago, however the neuro who diagnosed me retired and passed me on to someone else.
I was under him for 6 years, only seeing him once every year for about 10 minutes.
So 10 minutes for 6 years is one hour off his time , and one hour off my time.
I then started to question my diagnosis off MS, as i was getting skin problems.
I then phoned his secretary and got an appointment where i put this to him, and all the way through he wasnt talking to me , he was talking to my mum, and asking her questions, which i thought was strange, but i didnt mind as i am close to my mum, and she has seen me sick.
The neuro did some further testing, which was right outside of the pyramid, and left me reeling, with tests for Porphria, and HIV.
I tested negative for these, as i new i would, but he wouldnt give me the testing i wanted, and said i had abnormal illness behaviour.
Once this went on my medical records, i have never been taken seriously, and whenever i have been poorly have been fobbed off royal.
I would definately take a recorder, to tape the conversation, and iff he has nothing to hide then he wont mind.
I would sit back and try and see where this neuro is going, and that is by listening to the questions he asks your friend.
Also take a written statement, with all your symptoms on , dates off when they happened and the duration they lasted.
I find neuros ask you a question, then turn the question around, and ask it you in a different way to see if they still get the same answer.
I hope you get treated with the dignity, that patients should get treated, and i wish you well for your neuro appointment.
Good Luck
Nicola
Boy, I dont like the sound of that. I have a feeling he plans to go the route of anxiety. Just my guess.
Hi de when is your appointment?
Baclofen my daughter has just been described this for her nerve pain in her stomach. Sadly when she had her hysterectomy they cut a nerve now the poor thing is in pain all day and it is worse when she rides her horse.
Anyway it works really well for her. She did have some weird side effects but they seem to have settled down now.
Baclofan is used by neurologists for nerve pain......so I assume the doctor gave you this for nerve pain.
FMS is not a nerve disease its muscular and most people just get given pain killers for it.
IF you had a RELAPSE it is more likely MS or ME. You dont relapse with FMS, although you can have better days or bad days but I dont believe you just relapse....
I wouldnt bother taking someone to the neuro. I expect it is to protect you too, but they can use it either way. I know several people who have ended up with anxiety diagnosis when taking someone along.........
Its you they need to see.
When I was reassessed the other day for care needs I gave the person lots of things that I had before I got sick. Letters from students saying how good a teacher I was, books I had written, photographs of me and my learner of the year who were awarded prizes by our local MP.
I said to her...here look at these before you start to talk to me as you have no idea who I am, or what I was nearly 5 years ago.....she looked taken aback but I am not for turning anymore its my way or the highway with these people. I am fed up of people treating me as though I am a lazy arse who just wants to sit about all day........
She was amazed and what I used to do, then she could see just how frustrated as I was confined to my chair, and she treated me with a bit more respect.
xx good luck xx
Baclofen my daughter has just been described this for her nerve pain in her stomach. Sadly when she had her hysterectomy they cut a nerve now the poor thing is in pain all day and it is worse when she rides her horse.
Anyway it works really well for her. She did have some weird side effects but they seem to have settled down now.
Baclofan is used by neurologists for nerve pain......so I assume the doctor gave you this for nerve pain.
FMS is not a nerve disease its muscular and most people just get given pain killers for it.
IF you had a RELAPSE it is more likely MS or ME. You dont relapse with FMS, although you can have better days or bad days but I dont believe you just relapse....
I wouldnt bother taking someone to the neuro. I expect it is to protect you too, but they can use it either way. I know several people who have ended up with anxiety diagnosis when taking someone along.........
Its you they need to see.
When I was reassessed the other day for care needs I gave the person lots of things that I had before I got sick. Letters from students saying how good a teacher I was, books I had written, photographs of me and my learner of the year who were awarded prizes by our local MP.
I said to her...here look at these before you start to talk to me as you have no idea who I am, or what I was nearly 5 years ago.....she looked taken aback but I am not for turning anymore its my way or the highway with these people. I am fed up of people treating me as though I am a lazy arse who just wants to sit about all day........
She was amazed and what I used to do, then she could see just how frustrated as I was confined to my chair, and she treated me with a bit more respect.
xx good luck xx
Hi De,
I would particularly heed Jill's warning. This is very similar to my situation, and has been reported from many on this board.
Be well,
--faithHGL
I would particularly heed Jill's warning. This is very similar to my situation, and has been reported from many on this board.
Be well,
--faithHGL
Hi and Welcome too!
I can't recall if any of the neuros I've seen requested that I bring someone or not. Sorry, I've seen several neuros and I've been at this for several years lol..BUT..I usually do bring someone that I trust and that has seen my symptoms at work. I bring them not only as a witness to my symptoms but to give testimony, if needed, on how I use to be compared to how I am now.
I also bring someone to help remember things that has happened to me since the last visit with a neuro, whether it was a new or old symptoms that came about, or to remember what happened in general during the neuro visit. If you do decide to bring someone, bring someone that you trust and that knows your situation. Bring someone that has witness some of your symptoms.
I'm on Baclofen also. I was put on it in 2007 when I started to have all these neurological issues in full swing. I probably wouldn't move as well as I do without this med because I suffer from a lot of spasticity (more on the left side). I also developed foot drop in 2008 due to spasticity. Baclofen helps relax muscles that are preventing free movement due to spasticity (as in my case).
I think the only side effect I had from it was a little tiredness when I first started it. Once my body got use to the medication I felt a lot better. If you have any questions about this med..feel free to ask. ;)
I can't recall if any of the neuros I've seen requested that I bring someone or not. Sorry, I've seen several neuros and I've been at this for several years lol..BUT..I usually do bring someone that I trust and that has seen my symptoms at work. I bring them not only as a witness to my symptoms but to give testimony, if needed, on how I use to be compared to how I am now.
I also bring someone to help remember things that has happened to me since the last visit with a neuro, whether it was a new or old symptoms that came about, or to remember what happened in general during the neuro visit. If you do decide to bring someone, bring someone that you trust and that knows your situation. Bring someone that has witness some of your symptoms.
I'm on Baclofen also. I was put on it in 2007 when I started to have all these neurological issues in full swing. I probably wouldn't move as well as I do without this med because I suffer from a lot of spasticity (more on the left side). I also developed foot drop in 2008 due to spasticity. Baclofen helps relax muscles that are preventing free movement due to spasticity (as in my case).
I think the only side effect I had from it was a little tiredness when I first started it. Once my body got use to the medication I felt a lot better. If you have any questions about this med..feel free to ask. ;)
Be very careful. When my son went to see a neuro, his wife was "interviewed" by the neuro in a separate room. He used some innocuous things she mentioned to come up with a diagnosis of "anxiety". All of his major symptoms were ignored and attributed to anxiety. The only thing my anxious about was the lack of proper diagnosis for all of his symptoms.
A good thing to do is bring a tape recorder to your appt and tape the meeting with your neuro. A good neuro should not object to being recorded.
Good luck.
A good thing to do is bring a tape recorder to your appt and tape the meeting with your neuro. A good neuro should not object to being recorded.
Good luck.
Hi De,
I'll second Binx's welcome to our community of fellow travelers through this strange place.
Like Binx, I've never been told to bring someone along by a neuro. On the other hand, I have brought my husband with me on several occasions and my sister-in-law on one. My sister-in-law was such a blessing to have with me. She *remembers* me as someone without the cognitive problems and as someone with energy, strength, balance and endurance. My husband was sometimes helpful, but on at least two occasions, the doctors used things my husband said as though these revealed more truth about my condition than what I said. And, the frustrating thing about that was that at the time, my husband was convinced that my real problem was that I was under too much stress. I should have returned the favor when I went with him to the urologist over a swollen prostrate! (LOL!)
So, if you do decide to bring someone along, be sure its someone that believes in you and trusts your own sense of what is normal, and someone that remembers you as a healthy person.
When is your appointment? And, do you know who you would want to bring?
All the best to you.
--faithHGL
I'll second Binx's welcome to our community of fellow travelers through this strange place.
Like Binx, I've never been told to bring someone along by a neuro. On the other hand, I have brought my husband with me on several occasions and my sister-in-law on one. My sister-in-law was such a blessing to have with me. She *remembers* me as someone without the cognitive problems and as someone with energy, strength, balance and endurance. My husband was sometimes helpful, but on at least two occasions, the doctors used things my husband said as though these revealed more truth about my condition than what I said. And, the frustrating thing about that was that at the time, my husband was convinced that my real problem was that I was under too much stress. I should have returned the favor when I went with him to the urologist over a swollen prostrate! (LOL!)
So, if you do decide to bring someone along, be sure its someone that believes in you and trusts your own sense of what is normal, and someone that remembers you as a healthy person.
When is your appointment? And, do you know who you would want to bring?
All the best to you.
--faithHGL
hi de, and welcome to limboland.
i am sorry for all you have been going through, but i'm glad to hear your relapse has subsided and that you are back to baseline, as it were...
i have not been told to bring someone along to an appointment by any of my neurologists, and i have seen 3 of them to date. i have been told to bring someone along with me by folks on this site and by other friends who always feel it's good to have a second pair of ears, but, again, i just don't know about having a neuro ask someone else questions about you. it does seem odd.
maybe someone else will have some insight into this??
best wishes and warmest welcomes to you.
binx
i am sorry for all you have been going through, but i'm glad to hear your relapse has subsided and that you are back to baseline, as it were...
i have not been told to bring someone along to an appointment by any of my neurologists, and i have seen 3 of them to date. i have been told to bring someone along with me by folks on this site and by other friends who always feel it's good to have a second pair of ears, but, again, i just don't know about having a neuro ask someone else questions about you. it does seem odd.
maybe someone else will have some insight into this??
best wishes and warmest welcomes to you.
binx
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