Aa
3rd neuro...good grief..help
I just posted this in the MS forum. I need feedback from you all too!
01 10 letter to medhelp about Dr. B
My previous neuro (#2) coldly dismissed me and thought I should get another opinion. I had gone to him to see if I had trigeminal neuralgia. (I didn't). At my first visit he seemed to care about me and thought I might be part of the small percentage of people who do not show up on MRI's with MS because of my family history (mother & sister with MS) He put me on Copaxone because he thought I had Possible MS.
On my third visit he was extrodinarily rude. He was almost yelling. He marched into the room and told me that I do not have MS and that I was wasting my time coming to him. And then told me that I was wasting good medicine that could be going to other people. Stun! (I really don't think Teva will run out of Copaxone)
He never asked me how I was doing since the last visit 2 months ago..didn't seem to care. Then told me, as he was rolling his eyes to the ceiling, that I could get a 2nd opinion with an MS expert who was joining the practice.
I was really sick when I went to see him. I could hardly respond.
My gut told me to run from this whole group. I went anyway, last week. It has taken me days to come down from the nightmare. Sorry this is a long vent.
She, (neuro #3) began by asking me to tell her what had happened over the last few years. I told her that two weeks ago I had fallen and gone to the ER and had Post concussion syndrome. I thought my memory was bad before, but it is bizarrely worse right now. She didn't bat an eye or even acknowledge what I told her.
I fell because my right leg just didn't do it's job.
I asked her if she had seen my records from the other neuro. She said she had, but wanted me to put it in my own words
She just kept asking me specific questions in detail and I could get some of it in order and couldn't do much after that. (she was obviously annoyed with me) I have timelines that she says she had read. My husband filled in a lot of details for her. I was so confused and could sense where this was all going and totally fell apart. She just sat there like a frozen statue. There was a box of kleenex right next to her and she never offered me one.
She kept at the questions and I had to tell her again that I was having severe cognitive problems and my husband would have to answer...I felt like I was in a torture chamber.
I need feedback on what she told me. She has just been certified in MS/Neurology.
She told me:
1. that I was too old to have relapsing remitting MS and that everyone over 60 only gets progressive MS.
(has anyone heard this?) interesting article from Spain
http://www.docguide.com/news/content.nsf/NewsPrint/852571020057CCF6852571FA00692EDE
2. I don't have progressive MS because I'm not debilitated enough
3. Copaxone should have done nothing for me (as I am too old for relapsing remitting MS)
(I've been on Copaxone since August. After about 2 months I did feel better. I had symptoms but they were not
terrible. I even stopped using my cane.)
4. Sensitivity to heat and humidity is not considered (by their office) as a marker for MS
(well, it isn't when it's looked at by itself, but in combination with all my other symptoms...Huh?)
5. She told me that I had lesions on the MRI but they did not meet the McDonald criteria. She didn't know what they
were, but were probably due to age
6. She told me that I just didn't have a good enough story to convince her that I had MS. (how could I do that after
whacking my head...I wanted to scream at her.)
7. That only 4% of the people who have MS symptoms and who don't meet the McDonald criteria-actually have it.
(I couldn't be part of that group?)
I told her that I had been tested for the mimics of MS and all tests and others as well came back negative. I also told her that I was not making this up and did not have conversion disorder and that I had no deep seated need to have MS. Because of my family history, I just wanted to rule it out and so far that no neurologist has given me a good explanation as to why it was not MS. I was really PO'd.
I don't know what to do at this point. I am getting a walker because my balance is terrible. I've almost fallen several times since two weeks ago.
My husband helped me put this together as sometimes I find myself talking ragtime. Scary to be me right now. My regular doc says it may take months to improve from the fall.
I surely wish we could exchange the names of good Neuros on this site. Hugs to all of you and what you are going through too. I've been too tired to write much, but do read new posts most days and send many hugs to you all, Charley
01 10 letter to medhelp about Dr. B
My previous neuro (#2) coldly dismissed me and thought I should get another opinion. I had gone to him to see if I had trigeminal neuralgia. (I didn't). At my first visit he seemed to care about me and thought I might be part of the small percentage of people who do not show up on MRI's with MS because of my family history (mother & sister with MS) He put me on Copaxone because he thought I had Possible MS.
On my third visit he was extrodinarily rude. He was almost yelling. He marched into the room and told me that I do not have MS and that I was wasting my time coming to him. And then told me that I was wasting good medicine that could be going to other people. Stun! (I really don't think Teva will run out of Copaxone)
He never asked me how I was doing since the last visit 2 months ago..didn't seem to care. Then told me, as he was rolling his eyes to the ceiling, that I could get a 2nd opinion with an MS expert who was joining the practice.
I was really sick when I went to see him. I could hardly respond.
My gut told me to run from this whole group. I went anyway, last week. It has taken me days to come down from the nightmare. Sorry this is a long vent.
She, (neuro #3) began by asking me to tell her what had happened over the last few years. I told her that two weeks ago I had fallen and gone to the ER and had Post concussion syndrome. I thought my memory was bad before, but it is bizarrely worse right now. She didn't bat an eye or even acknowledge what I told her.
I fell because my right leg just didn't do it's job.
I asked her if she had seen my records from the other neuro. She said she had, but wanted me to put it in my own words
She just kept asking me specific questions in detail and I could get some of it in order and couldn't do much after that. (she was obviously annoyed with me) I have timelines that she says she had read. My husband filled in a lot of details for her. I was so confused and could sense where this was all going and totally fell apart. She just sat there like a frozen statue. There was a box of kleenex right next to her and she never offered me one.
She kept at the questions and I had to tell her again that I was having severe cognitive problems and my husband would have to answer...I felt like I was in a torture chamber.
I need feedback on what she told me. She has just been certified in MS/Neurology.
She told me:
1. that I was too old to have relapsing remitting MS and that everyone over 60 only gets progressive MS.
(has anyone heard this?) interesting article from Spain
http://www.docguide.com/news/content.nsf/NewsPrint/852571020057CCF6852571FA00692EDE
2. I don't have progressive MS because I'm not debilitated enough
3. Copaxone should have done nothing for me (as I am too old for relapsing remitting MS)
(I've been on Copaxone since August. After about 2 months I did feel better. I had symptoms but they were not
terrible. I even stopped using my cane.)
4. Sensitivity to heat and humidity is not considered (by their office) as a marker for MS
(well, it isn't when it's looked at by itself, but in combination with all my other symptoms...Huh?)
5. She told me that I had lesions on the MRI but they did not meet the McDonald criteria. She didn't know what they
were, but were probably due to age
6. She told me that I just didn't have a good enough story to convince her that I had MS. (how could I do that after
whacking my head...I wanted to scream at her.)
7. That only 4% of the people who have MS symptoms and who don't meet the McDonald criteria-actually have it.
(I couldn't be part of that group?)
I told her that I had been tested for the mimics of MS and all tests and others as well came back negative. I also told her that I was not making this up and did not have conversion disorder and that I had no deep seated need to have MS. Because of my family history, I just wanted to rule it out and so far that no neurologist has given me a good explanation as to why it was not MS. I was really PO'd.
I don't know what to do at this point. I am getting a walker because my balance is terrible. I've almost fallen several times since two weeks ago.
My husband helped me put this together as sometimes I find myself talking ragtime. Scary to be me right now. My regular doc says it may take months to improve from the fall.
I surely wish we could exchange the names of good Neuros on this site. Hugs to all of you and what you are going through too. I've been too tired to write much, but do read new posts most days and send many hugs to you all, Charley
Awwwww Charlie.
Hang in there honey...Doctors need to think about what it would be like to walk in thier patients shoes....
Take Care Theresa
Hang in there honey...Doctors need to think about what it would be like to walk in thier patients shoes....
Take Care Theresa
You too. If we don't continue to fight for our health, then we are just giving in to those in the medical profession who want to want to bully us into submission so that they can feel good. That's not on my agenda for this life time. We just have to keep at it-no matter what. That's my plan for today. Hugs, Charley.
I feel your frustration Charley. I've been in this fight with neuros for over 4 years now and was told that my lesions on the brain were probably from age. I'm 45. I was also told that I should be thankful that I'm not that bad yet and in a wheelchair. Apparently missing work for wonky legs that won't allow you to walk far don't count. Stuttering and slurring so that you can't communicate properly doesn't matter. Sigh.....
I saw so much of myself in your post. It's an endless battle and there are times where the fight leaves us only to come back again. Hang in there and keep fighting.
Hugs
Moki
I saw so much of myself in your post. It's an endless battle and there are times where the fight leaves us only to come back again. Hang in there and keep fighting.
Hugs
Moki
Thank you all and all of you have helped me come back from a neuro induce coma. I have truly been blessed by all of you and feel for your struggles deeply.
I have been posting on the Multiple Sclerosis site with the same info and if any of you feel like reading the replies there has been some really good input there with lots of info that has helped me get through this.
I don't know who wrote it in which forum, but someone said that we should keep a video camera available so that we can tape the times when we are going through the worst and then take it to the docs. Was it you Maria?
If I run into another neruo with a similar attitude, I think I will tell him/her that I am not in for an oil change and lube so please treat me with the respect that I deserve as a hurting human being.
Hugs to you all, Charley
I have been posting on the Multiple Sclerosis site with the same info and if any of you feel like reading the replies there has been some really good input there with lots of info that has helped me get through this.
I don't know who wrote it in which forum, but someone said that we should keep a video camera available so that we can tape the times when we are going through the worst and then take it to the docs. Was it you Maria?
If I run into another neruo with a similar attitude, I think I will tell him/her that I am not in for an oil change and lube so please treat me with the respect that I deserve as a hurting human being.
Hugs to you all, Charley
OMG SAM I wish I could write like you - YOUR AMAZING.
You said in your post above EVERYTHING that has happened to me LOL.
I told my neuro last time I saw him YOU DONT SEE ME WHEN I AM REALLY ILL. Perhaps next time I should come in my WHEELCHAIR.
We do struggle on that is for sure.
I believe that another person with my symptoms could well be spending most of their time in BED.
I however choose to keep going as long as I can, doesnt mean that every step I take isnt painful = exhausting or frightening.
I think you should write a book LOL.xxx
Thank you for articulating for me LOL. xxxx
You said in your post above EVERYTHING that has happened to me LOL.
I told my neuro last time I saw him YOU DONT SEE ME WHEN I AM REALLY ILL. Perhaps next time I should come in my WHEELCHAIR.
We do struggle on that is for sure.
I believe that another person with my symptoms could well be spending most of their time in BED.
I however choose to keep going as long as I can, doesnt mean that every step I take isnt painful = exhausting or frightening.
I think you should write a book LOL.xxx
Thank you for articulating for me LOL. xxxx
Hi Charley...please do hold on to your knowledge of your own body...I know it's really hard and they get your mind spinning with all their vacillations and just plain inattention to detail. But you know your body and its sensations infinitely better than anyone else - if you've got those symptoms then you have physical manifestations of a condition that needs attention.
Totally agree with Maria - the two neuros' contradictions make no sense. (Did they even go to med sch? I mean, surely the text books say more or less the same things? Maybe one is up in her/his current reading and the other isn't...?)
And also, like Maria, I'm in my 50s - MS has been posited in my case too (but ruled out. Besides, I just knew it wasn't, just knew...). So it's not a science - more of a rather slippery art.
Plus - how do they really know how debilitated you are? When you get to the clinic you've prepped for days, usually rested and more or less compos mentis. And you turn up smart and tidy because it makes you feel better, even though we're feeling yuk/woozy, dripping with pain we have our pride!!
They don't see you on your 'normal' cr*p days, do they? I suspect that we girls really really push ourselves to get on with normal life and push ourselves way beyond what most men would (not being sexist here, just realistic - we all know what 'man-flu' is like...LOL - your sniffle becomes a 7day death's door jobbie for him.) I'm sure Maria and binx push themselves way over the limits, and I've certainly battled like hell to rebuild normality (not so successfully, I'm afraid).
Excellent idea, binx, to go to an HE institution. They're more likely to be involved in research and innovations as you say.
The self-teaching is laborious though, so take it easy. But I'm confident that you'll stumble across the answers one day. They'll all just snap into place in an AHA! moment ;-)...then begins the trial of 'selling' your diagnosis to your docs. I wrote all the sx to my doc, but didn't name it (got to leave them something to do - LOL). Nowadays I document/voice record everything to all docs and have become quite legalistic.
Talking about recording, I now refuse to deal with any docs alone or without a voice recorder. I've just had enough of the verbals and the runarounds.
bestest
samxx
PS. Am currently playing with a little fantasy - being the fly on the wall when the misdiagnosing docs I've been subject to get the official documentation of what they refused to treat properly and the formal requests for explanation and apology. Eeeee - such small, harmless pleasures that are left...! ;-)
Totally agree with Maria - the two neuros' contradictions make no sense. (Did they even go to med sch? I mean, surely the text books say more or less the same things? Maybe one is up in her/his current reading and the other isn't...?)
And also, like Maria, I'm in my 50s - MS has been posited in my case too (but ruled out. Besides, I just knew it wasn't, just knew...). So it's not a science - more of a rather slippery art.
Plus - how do they really know how debilitated you are? When you get to the clinic you've prepped for days, usually rested and more or less compos mentis. And you turn up smart and tidy because it makes you feel better, even though we're feeling yuk/woozy, dripping with pain we have our pride!!
They don't see you on your 'normal' cr*p days, do they? I suspect that we girls really really push ourselves to get on with normal life and push ourselves way beyond what most men would (not being sexist here, just realistic - we all know what 'man-flu' is like...LOL - your sniffle becomes a 7day death's door jobbie for him.) I'm sure Maria and binx push themselves way over the limits, and I've certainly battled like hell to rebuild normality (not so successfully, I'm afraid).
Excellent idea, binx, to go to an HE institution. They're more likely to be involved in research and innovations as you say.
The self-teaching is laborious though, so take it easy. But I'm confident that you'll stumble across the answers one day. They'll all just snap into place in an AHA! moment ;-)...then begins the trial of 'selling' your diagnosis to your docs. I wrote all the sx to my doc, but didn't name it (got to leave them something to do - LOL). Nowadays I document/voice record everything to all docs and have become quite legalistic.
Talking about recording, I now refuse to deal with any docs alone or without a voice recorder. I've just had enough of the verbals and the runarounds.
bestest
samxx
PS. Am currently playing with a little fantasy - being the fly on the wall when the misdiagnosing docs I've been subject to get the official documentation of what they refused to treat properly and the formal requests for explanation and apology. Eeeee - such small, harmless pleasures that are left...! ;-)
Hi Charley,
I am somewhat of a newbie here and in limboland and am only on neuro 1..God Bless you. I don't know what to say except that I can not imagine what you must be feeling except for your frustration and pain. I hope you find someone who can help you and knows what they are talking about. You deserve that! I hope you find it!!! I hope you are feeling better soon.
Jib Jen
I am somewhat of a newbie here and in limboland and am only on neuro 1..God Bless you. I don't know what to say except that I can not imagine what you must be feeling except for your frustration and pain. I hope you find someone who can help you and knows what they are talking about. You deserve that! I hope you find it!!! I hope you are feeling better soon.
Jib Jen
dear charley,
i am so sorry to read about your experience, and sam's response was spot on perfection in addressing it. it is abuse no matter how you look at it and you have my every sympathy.
i only have one thing to add to sam's reply. when pursuing your 4th neurologist, you might be better served at an institution of higher learning. if you can find a neurologist at a research university/teaching hospital, there is a better chance s/he will be a thinker rather than someone hell bent on denying you care because you are the square peg that they cannot cram into their round hole.
with healing thoughts,
binx
i am so sorry to read about your experience, and sam's response was spot on perfection in addressing it. it is abuse no matter how you look at it and you have my every sympathy.
i only have one thing to add to sam's reply. when pursuing your 4th neurologist, you might be better served at an institution of higher learning. if you can find a neurologist at a research university/teaching hospital, there is a better chance s/he will be a thinker rather than someone hell bent on denying you care because you are the square peg that they cannot cram into their round hole.
with healing thoughts,
binx
Good grief. How miserably frustrating!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Charley
Thank you for your incredible response. I was just sitting here wondering if I should keep researching. That's how tired I am. Of course I will. Everything you've said is true. Hugs, Charley
Oh dear what can I say Charley.
RRMS can hit any age. One thing about my neuro is he said he didnt think I had MS because WAIT FOR IT, ARE YOU SITTING DOWN NOW WAIT..............................
I was constantly in relapse and if I had MS I would have periods of WELLNESS. Now there you go thats from an EXPERT. I am 58 so there LOL.
So you have one neuro say NO to MS because you are not ill enough PPMS, and then you have another neuro say NO to MS because I'M TOO ill LOL. (RRMS AT over 50)/
WAIT FOR IT. ARRRRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGHHHHHHHHH.
Digest that and I will continue tomorrow.xxxx
RRMS can hit any age. One thing about my neuro is he said he didnt think I had MS because WAIT FOR IT, ARE YOU SITTING DOWN NOW WAIT..............................
I was constantly in relapse and if I had MS I would have periods of WELLNESS. Now there you go thats from an EXPERT. I am 58 so there LOL.
So you have one neuro say NO to MS because you are not ill enough PPMS, and then you have another neuro say NO to MS because I'M TOO ill LOL. (RRMS AT over 50)/
WAIT FOR IT. ARRRRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGHHHHHHHHH.
Digest that and I will continue tomorrow.xxxx
Good grief, charley, how vile and devastating for you - and your husband I imagine.
No wonder you're feeling so very down and confused. It can take weeks to recover from one of these Spanish Inquisitions.
I don't know anything much about MS, but I do know a lot about these [fill in the worst words in the language here] neuros whose sole aim in life is apparently to diagnose conversion disorder left, right and centre and then psychically and emotionally demolish their errant patients.
I wonder what the hell is wrong with these people. Because there IS something wrong with them.
In any other sphere, what these people have said and done to you (and me and loads of others here and all over the world it sadly seems) would be counted as verbal and emotional abuse.
But in their power-trippy (?) world it is so acceptable for some bizarre reason.
For more than 5yrs I've struggled against this sort of relentless battering. First I was so out of it with the stroke that it didn't register, then I got into a real confusion about what they were doing because my sx were and are soooo self-evident, and simple when one stops projecting ulterior conversion motives! (as has now been shown conclusively at long last - my new GP put her finger on it literally within 10mins!)
Then I realised I had to learn as much as I could about neurology vis a vis my own sx. And finally...I'm now just about to get secondary confirmation of the GP's accurate diagnosis of PHYSIOLOGICAL disease. After 5 and a half years. It's my guess that the vast majority of women patients who have to suffer this neglect and abuse will eventually get diagnoses of physical disease.
I made the massive mistake of trusting doctors, and trusting that they were well-educated in their fields , b) competent, c) open-minded and able to listen, d) free of sexist assumptions, e) honourable and had integrity.
Only one of the 20-odd doctors I've encountered fulfilled anything like all those criteria.
If I hadn't educated myself, I would not have been able to battle this far. As it is I am utterly crushed by the cruel, dismissive and arrogant attitudes of many doctors who just followed the one before, like sheep.
Although I don't know about MS, my (serious) studies of academic and medical papers have shown me that the literature is heaving with cases that do not follow the 'rules', that do not conform to Old MacDonald and his herd of sheep's text books of 'common diseases and their normal signs and symptoms'.
From what I've learnt, for example, I am profoundly sceptical that any lesion that shows up on an MRI is 'nothing to worry about' or 'not connected'. A lesion is scar tissue or an active benign or malignant neoplasm - something that is growing now and needs attention. Scar tissue, similarly, requires note - scar tissue anywhere else in the body quite often causes weaknesses and problems down the line.
If I were you I'd be looking for a new neuro pronto and someone unconnected with these bullies. I'd also be getting T2/3 MRIs of whole spine as well as MRAs of head and neck.
Yes, it's a pity that it feels wrong to name names in a public forum otherwise we patients would have something like a Facebook wall of bad docs and another for good docs. Guess which wall would be full up.
I can only wish you much better luck next time and hope that you can somehow recover quickly from these 'neuro-attacks'....lots of hugs to you too
samx
No wonder you're feeling so very down and confused. It can take weeks to recover from one of these Spanish Inquisitions.
I don't know anything much about MS, but I do know a lot about these [fill in the worst words in the language here] neuros whose sole aim in life is apparently to diagnose conversion disorder left, right and centre and then psychically and emotionally demolish their errant patients.
I wonder what the hell is wrong with these people. Because there IS something wrong with them.
In any other sphere, what these people have said and done to you (and me and loads of others here and all over the world it sadly seems) would be counted as verbal and emotional abuse.
But in their power-trippy (?) world it is so acceptable for some bizarre reason.
For more than 5yrs I've struggled against this sort of relentless battering. First I was so out of it with the stroke that it didn't register, then I got into a real confusion about what they were doing because my sx were and are soooo self-evident, and simple when one stops projecting ulterior conversion motives! (as has now been shown conclusively at long last - my new GP put her finger on it literally within 10mins!)
Then I realised I had to learn as much as I could about neurology vis a vis my own sx. And finally...I'm now just about to get secondary confirmation of the GP's accurate diagnosis of PHYSIOLOGICAL disease. After 5 and a half years. It's my guess that the vast majority of women patients who have to suffer this neglect and abuse will eventually get diagnoses of physical disease.
I made the massive mistake of trusting doctors, and trusting that they were well-educated in their fields , b) competent, c) open-minded and able to listen, d) free of sexist assumptions, e) honourable and had integrity.
Only one of the 20-odd doctors I've encountered fulfilled anything like all those criteria.
If I hadn't educated myself, I would not have been able to battle this far. As it is I am utterly crushed by the cruel, dismissive and arrogant attitudes of many doctors who just followed the one before, like sheep.
Although I don't know about MS, my (serious) studies of academic and medical papers have shown me that the literature is heaving with cases that do not follow the 'rules', that do not conform to Old MacDonald and his herd of sheep's text books of 'common diseases and their normal signs and symptoms'.
From what I've learnt, for example, I am profoundly sceptical that any lesion that shows up on an MRI is 'nothing to worry about' or 'not connected'. A lesion is scar tissue or an active benign or malignant neoplasm - something that is growing now and needs attention. Scar tissue, similarly, requires note - scar tissue anywhere else in the body quite often causes weaknesses and problems down the line.
If I were you I'd be looking for a new neuro pronto and someone unconnected with these bullies. I'd also be getting T2/3 MRIs of whole spine as well as MRAs of head and neck.
Yes, it's a pity that it feels wrong to name names in a public forum otherwise we patients would have something like a Facebook wall of bad docs and another for good docs. Guess which wall would be full up.
I can only wish you much better luck next time and hope that you can somehow recover quickly from these 'neuro-attacks'....lots of hugs to you too
samx
You must join this user group in order to participate in this discussion.
You are reading content posted in the SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Group
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
