Aa
ESR / ANA / Vitamin B12 blood results
Hi,
I was with my GP yesterday. My vitamin B12 is now at 800. I have irritable bowel and my bowel specialist would like this to be over 1000. My GP has started injections again fortnightly.
In 2014, my symptoms of visual disturbances and balance problems began. On admittance to hospital by neurologist no 1, blood tests were carried out. At that time as you know he was testing for demyelination. Two blood results were abnormally high. ANA was 320. Normal range <80. ESR was 29. Normal range 1-20.
Vitamin B12 was 207. Within range, but more on the lower range. It dropped to 104, in February 2016. My electrophoresis in February 2016 was Raised Alpha - 1 Globulin.
IgA 2.10, IgG 8.60, IgM 0.77.
Paraprotein Screen Negative.
Two weeks ago results, my GP told me yesterday were good just very slightly up. She said we need to keep an eye on them yearly for multiple myeloma. Do you guy's know if these bloods would also be related to a disease like MS?
My GP said my symptoms of visual disturbances and balance problems began in 2014, she doesn't believe my symptoms are psychological, due to all the years i coped with my past before 2014. These specific blood test results since 2014, have been up and down. I'm being treated for vitamin B12 deficiency.
There is evidence of abnormal blood results in 2014. I was admitted to hospital for tests for demyelination, but no reference made to any findings of a neurological examination, normal or abnormal, prior to being admitted. MRI protocol when assessing someone for MS, is to give contrast, it wasn't given.
Any thoughts i would appreciate.
Thanks
Marian.
I was with my GP yesterday. My vitamin B12 is now at 800. I have irritable bowel and my bowel specialist would like this to be over 1000. My GP has started injections again fortnightly.
In 2014, my symptoms of visual disturbances and balance problems began. On admittance to hospital by neurologist no 1, blood tests were carried out. At that time as you know he was testing for demyelination. Two blood results were abnormally high. ANA was 320. Normal range <80. ESR was 29. Normal range 1-20.
Vitamin B12 was 207. Within range, but more on the lower range. It dropped to 104, in February 2016. My electrophoresis in February 2016 was Raised Alpha - 1 Globulin.
IgA 2.10, IgG 8.60, IgM 0.77.
Paraprotein Screen Negative.
Two weeks ago results, my GP told me yesterday were good just very slightly up. She said we need to keep an eye on them yearly for multiple myeloma. Do you guy's know if these bloods would also be related to a disease like MS?
My GP said my symptoms of visual disturbances and balance problems began in 2014, she doesn't believe my symptoms are psychological, due to all the years i coped with my past before 2014. These specific blood test results since 2014, have been up and down. I'm being treated for vitamin B12 deficiency.
There is evidence of abnormal blood results in 2014. I was admitted to hospital for tests for demyelination, but no reference made to any findings of a neurological examination, normal or abnormal, prior to being admitted. MRI protocol when assessing someone for MS, is to give contrast, it wasn't given.
Any thoughts i would appreciate.
Thanks
Marian.
Best Answer
COMMUNITY LEADER
1 Comments
Hi JJ,
I had the idea that he definitely ruled out MS and diagnosed a psychological disorder. He is now saying he's unsure based on what?
Anyway I've decided to wait for his answers first. I'm going to speak to my GP later to discuss Multiple Myeloma. He did say he would consider my ESR to have been normal in 2014. But since my GP has mentioned Multiple Myeloma, I need to see all my blood results since then.
I remember neurologist no 2 saying he noted the elevated ESR and ANA. And requested them to be redone by my GP.
It is very difficult, to understand jj, I just seem to be getting its definitely not MS, he's now unsure, he's said i could be right, he could be wrong. Multiple Myeloma when i mentioned it, he went very quiet. Yet on his ESR blood result report, there is something written about readings for Multiple Myeloma.
It's normal range is under 20. Mine was 29, but it could be just a clue that inflammation was there and is still there since, and obviously something is causing that.
Neurologist No 2 said clinical review to my GP as well as MRI on at least an annual basis. Is clinical blood work?
I'll get back to you later. The thing is MS is also inflammation as too many other diseases. Multiple Myeloma is cancer of the blood. And specific proteins are being checked in my blood since 2014 by my GP.
Neurologist no 1, however wasn't the one who advised my GP to watch my proteins, but No 2 perhaps.
I will talk to her shortly and give her the latest update from neurologist no 1. And discuss bloodwork.
I accept that i may misunderstand facts and pointers to MS, but this neurologist did not clarify in writing yet the questions i asked on those facts JJ.
If there are no facts, then why the hell, refer me. My friend said to me yesterday that I've put doubt in his mind. Sometimes things aren't always going to be typical, sometimes they have to think outside of the box. Of course i accept my symptoms and results might not be typical, but there is doubt about MS now from neurologist no 1, but there was no doubt in 2014. He's unsure since i asked the questions?
I accept that you think I'm not understanding you all, but There's a grey area here regarding MS.
I accept that i might be wrong, i never said i was right, i just felt evidence was there perhaps, that needed further clarification on from 2014.
But something was just niggling in me since 2014, that my results were not all normal and i needed to get explanations, that's all JJ.
Marian
I had the idea that he definitely ruled out MS and diagnosed a psychological disorder. He is now saying he's unsure based on what?
Anyway I've decided to wait for his answers first. I'm going to speak to my GP later to discuss Multiple Myeloma. He did say he would consider my ESR to have been normal in 2014. But since my GP has mentioned Multiple Myeloma, I need to see all my blood results since then.
I remember neurologist no 2 saying he noted the elevated ESR and ANA. And requested them to be redone by my GP.
It is very difficult, to understand jj, I just seem to be getting its definitely not MS, he's now unsure, he's said i could be right, he could be wrong. Multiple Myeloma when i mentioned it, he went very quiet. Yet on his ESR blood result report, there is something written about readings for Multiple Myeloma.
It's normal range is under 20. Mine was 29, but it could be just a clue that inflammation was there and is still there since, and obviously something is causing that.
Neurologist No 2 said clinical review to my GP as well as MRI on at least an annual basis. Is clinical blood work?
I'll get back to you later. The thing is MS is also inflammation as too many other diseases. Multiple Myeloma is cancer of the blood. And specific proteins are being checked in my blood since 2014 by my GP.
Neurologist no 1, however wasn't the one who advised my GP to watch my proteins, but No 2 perhaps.
I will talk to her shortly and give her the latest update from neurologist no 1. And discuss bloodwork.
I accept that i may misunderstand facts and pointers to MS, but this neurologist did not clarify in writing yet the questions i asked on those facts JJ.
If there are no facts, then why the hell, refer me. My friend said to me yesterday that I've put doubt in his mind. Sometimes things aren't always going to be typical, sometimes they have to think outside of the box. Of course i accept my symptoms and results might not be typical, but there is doubt about MS now from neurologist no 1, but there was no doubt in 2014. He's unsure since i asked the questions?
I accept that you think I'm not understanding you all, but There's a grey area here regarding MS.
I accept that i might be wrong, i never said i was right, i just felt evidence was there perhaps, that needed further clarification on from 2014.
But something was just niggling in me since 2014, that my results were not all normal and i needed to get explanations, that's all JJ.
Marian
I had my first MS attack in 1965 and I was diagnosed in 2009. It took me at least two years to be diagnosed with MS because they blamed my symptoms on MS. Two months ago I was told I have months to live.
I got all my affairs in orders so now I just enjoy myself. I do not want to waste time getting angry, frustrated, sad, etc.The only person it would hurt would be me.
My GP did apologize for missing the cancer. She says she will even come to the house if I need her. The same with the pain clinic.
I am having a big party in a week and a half to celebrate my life instead of a memorial.
I could be angry, sad, and upset. I am concentrating on having fun. I even forget I have MS or even cancer,
My mottos are" it does not matter what happens to you in life it is important what you do about it". "True contentment comes from playing the hand you are dealt."
Alex
I got all my affairs in orders so now I just enjoy myself. I do not want to waste time getting angry, frustrated, sad, etc.The only person it would hurt would be me.
My GP did apologize for missing the cancer. She says she will even come to the house if I need her. The same with the pain clinic.
I am having a big party in a week and a half to celebrate my life instead of a memorial.
I could be angry, sad, and upset. I am concentrating on having fun. I even forget I have MS or even cancer,
My mottos are" it does not matter what happens to you in life it is important what you do about it". "True contentment comes from playing the hand you are dealt."
Alex
Hi aspen2
It has been confirmed that the neurologists letter has been posted to me. I should receive tomorrow or Wednesday. These answers will hopefully set me straight regarding MS.
Whatever is stable and not progressing he is aware of and although he has not viewed my 2015/2016 MRI's, it's now evident that my Mri 2014 did in fact show what is stable and not progressing. So he had only the 2016 report that said stable and no progression, he didn't have my latest MRI'S.
There was no need for me to go to any further neurologists. This neurologist did not do right by me and instead of referring me to a psychologist he should have acknowledged that these changes were evidence of a process happening. As far as I'm concerned the decline in my health could have been caught even earlier if he had done an Mri in 2013. I suffered severe morning headaches for months and numbness all over my body. He diagnosed migraine.
These answers should be very telling. I will update you once i receive them. Stable and no progression is excellent, but it's not to say i don't want to know what process happened. Of course i do. I'm sure it's telling enough that my brain Mri 2014, showed enough to be followed up on. Which he didn't.
Marian
It has been confirmed that the neurologists letter has been posted to me. I should receive tomorrow or Wednesday. These answers will hopefully set me straight regarding MS.
Whatever is stable and not progressing he is aware of and although he has not viewed my 2015/2016 MRI's, it's now evident that my Mri 2014 did in fact show what is stable and not progressing. So he had only the 2016 report that said stable and no progression, he didn't have my latest MRI'S.
There was no need for me to go to any further neurologists. This neurologist did not do right by me and instead of referring me to a psychologist he should have acknowledged that these changes were evidence of a process happening. As far as I'm concerned the decline in my health could have been caught even earlier if he had done an Mri in 2013. I suffered severe morning headaches for months and numbness all over my body. He diagnosed migraine.
These answers should be very telling. I will update you once i receive them. Stable and no progression is excellent, but it's not to say i don't want to know what process happened. Of course i do. I'm sure it's telling enough that my brain Mri 2014, showed enough to be followed up on. Which he didn't.
Marian
We won't be telling you off. Not having answers is crazy making. I've been there .. it's hard to centre your mind and move forward despite unknowns.
I'm really glad neuro number 1 was helpful -- he sounds like a gem, actually.
And complex is frustrating. I saw my gp this week and he is basically at a standstill with me ... I've been referred for various things and will be waiting months for referrals. This is with a diagnosis.
A diagnosis changes less than I thought it would, actually. Except that part of your head that wonders incessantly.
SO keep getting help with symptoms, okay? Hugs.
I'm really glad neuro number 1 was helpful -- he sounds like a gem, actually.
And complex is frustrating. I saw my gp this week and he is basically at a standstill with me ... I've been referred for various things and will be waiting months for referrals. This is with a diagnosis.
A diagnosis changes less than I thought it would, actually. Except that part of your head that wonders incessantly.
SO keep getting help with symptoms, okay? Hugs.
1 Comments
Hi aspen2,
Many Thanks for your support and advice. Yes it's crazy the unknown. But I've got to even though i hate this, have to accept like you and so many others in complex situations, that there is no quick answers, and fixes until things change, that make it clearer for the doctors to say what this is.
Yes neurologist no 1, has been very good because he has explained in writing, which i should have this week about the changes in 2014, and they not in being due to MS. I needed to know that the changes noted were in fact changes, and that they were not on my previous MRI's. My symptoms were not there before 2014.
I will get help for my symptoms, and my GP will be watching me. Neurologist no 1 said he will see me so he's been very reasonable and I'm very thankful for his understanding. I will let him know this.
It's all frustration nothing intentional. I know my own heart and i just needed clarification on my Mri 2014. I will like you aspen2 be waiting for referrals, and with the help of my wonderful GP, i will be ok.
Thanks for taking me fairly, i really appreciate that you were sympathetic. You understand the difficulties, you understand the frustration with those difficulties. You've coped, and i will too :)
Big Hugs
Marian
Many Thanks for your support and advice. Yes it's crazy the unknown. But I've got to even though i hate this, have to accept like you and so many others in complex situations, that there is no quick answers, and fixes until things change, that make it clearer for the doctors to say what this is.
Yes neurologist no 1, has been very good because he has explained in writing, which i should have this week about the changes in 2014, and they not in being due to MS. I needed to know that the changes noted were in fact changes, and that they were not on my previous MRI's. My symptoms were not there before 2014.
I will get help for my symptoms, and my GP will be watching me. Neurologist no 1 said he will see me so he's been very reasonable and I'm very thankful for his understanding. I will let him know this.
It's all frustration nothing intentional. I know my own heart and i just needed clarification on my Mri 2014. I will like you aspen2 be waiting for referrals, and with the help of my wonderful GP, i will be ok.
Thanks for taking me fairly, i really appreciate that you were sympathetic. You understand the difficulties, you understand the frustration with those difficulties. You've coped, and i will too :)
Big Hugs
Marian
Hi JJ,
I just wanted to update you. I got a call from my GP yesterday. Neurologist no 1 rang her. He looked at all my MRI's, and doesn't think i have MS. My GP said his answers are on their way to me, she advises that i come and see her when i receive them and go she will go through them with me if i want. I know you all told me this, but I still needed to ask these questions to put MS to bed, which now I have.
She said, there were changes in 2014, which i thought there were, which is why I asked the questions i did. Since 2014, she said my MRI's have been stable which is good news. But she said my case is complex, and that's why there is no treatment or diagnosis. She said neurologist no 1, did mention something about a rheumatologist, but no need to discuss until i see her middle of next week.
The changes are stable, but what's stable, is not known, so I have to be thankful whatever it is isn't worsening. My GP said, it's a complex case, and she being only a GP, wouldn't think it's a tumour. It's not MS, I know that now.
As you can see, they can't say what is causing my symptoms, but time may tell i don't know. Neurologist no 1 has been more than reasonable and he understands the frustration this is causing me. I just knew in my gut that there were changes on my Mri 2014, but those changes are not MS.
You guys were right. It was never about right or wrong for me, it was to find out are the changes on my brain causing my symptoms. I will update you when i have his answers. I'm just going to have to accept, no diagnosis, no treatment unless things change, they might never hopefully. But I don't feel well and that is i suppose why I'm frustrated with everything, and everyone.
If you guy's want to give me a telling off, i fully understand, but at the same time, I'm glad i asked the questions i did so i could get a better understanding of what happened on my brain in 2014. Now i understand better.
Marian
I just wanted to update you. I got a call from my GP yesterday. Neurologist no 1 rang her. He looked at all my MRI's, and doesn't think i have MS. My GP said his answers are on their way to me, she advises that i come and see her when i receive them and go she will go through them with me if i want. I know you all told me this, but I still needed to ask these questions to put MS to bed, which now I have.
She said, there were changes in 2014, which i thought there were, which is why I asked the questions i did. Since 2014, she said my MRI's have been stable which is good news. But she said my case is complex, and that's why there is no treatment or diagnosis. She said neurologist no 1, did mention something about a rheumatologist, but no need to discuss until i see her middle of next week.
The changes are stable, but what's stable, is not known, so I have to be thankful whatever it is isn't worsening. My GP said, it's a complex case, and she being only a GP, wouldn't think it's a tumour. It's not MS, I know that now.
As you can see, they can't say what is causing my symptoms, but time may tell i don't know. Neurologist no 1 has been more than reasonable and he understands the frustration this is causing me. I just knew in my gut that there were changes on my Mri 2014, but those changes are not MS.
You guys were right. It was never about right or wrong for me, it was to find out are the changes on my brain causing my symptoms. I will update you when i have his answers. I'm just going to have to accept, no diagnosis, no treatment unless things change, they might never hopefully. But I don't feel well and that is i suppose why I'm frustrated with everything, and everyone.
If you guy's want to give me a telling off, i fully understand, but at the same time, I'm glad i asked the questions i did so i could get a better understanding of what happened on my brain in 2014. Now i understand better.
Marian
1 Comments
JJ,
I should be receiving neurologist answers early next week. I will update you if you like. I want to thank you for your support and solid advice and everyone else on this forum also. Once i update you all on his answers, that will be it from me on this forum.
I think when someone is sick, they do behave the way i have. Not knowing is very difficult. Something complex is worrying, because it's complex.
Marian
I should be receiving neurologist answers early next week. I will update you if you like. I want to thank you for your support and solid advice and everyone else on this forum also. Once i update you all on his answers, that will be it from me on this forum.
I think when someone is sick, they do behave the way i have. Not knowing is very difficult. Something complex is worrying, because it's complex.
Marian
Hi aspen2,
I don't know how i missed your reply, i just saw it now. Sorry about that. I've decided to wait for his answers and then decide what to do. I think for now I should just wait and see what answers i get. Things may become clearer or they may not. He did say himself and the radiologist would look at my MRI's.
Hopefully though if things could be resolved here it would be easier. I'll update you when i hear back from him. It might take awhile, but I'll let you guy's know.
Marian
I don't know how i missed your reply, i just saw it now. Sorry about that. I've decided to wait for his answers and then decide what to do. I think for now I should just wait and see what answers i get. Things may become clearer or they may not. He did say himself and the radiologist would look at my MRI's.
Hopefully though if things could be resolved here it would be easier. I'll update you when i hear back from him. It might take awhile, but I'll let you guy's know.
Marian
Hi JJ,
My mistake regarding the bloods. I don't have Myeloma thankfully. And yes i understand MS is a different type of inflammation. Thank you for explaining to me.
I'm sorry to hear about your family. Hopefully things will be resolved soon for me, and i can move on. Again thanks for the time you took to explain and for the links.
Much Appreciated
Marian
My mistake regarding the bloods. I don't have Myeloma thankfully. And yes i understand MS is a different type of inflammation. Thank you for explaining to me.
I'm sorry to hear about your family. Hopefully things will be resolved soon for me, and i can move on. Again thanks for the time you took to explain and for the links.
Much Appreciated
Marian
COMMUNITY LEADER
What ever you do please don't get your self too worried about Multiple Myeloma now, it's actually one of the 'rare' cancers, only around 1% of cancers are Multiple Myeloma and whilst "Raised Alpha - 1 Globulin" can be related to cancer, it's actually statistically more likely related to a acute or chronic inflammatory disease, of which there are hundreds.
You truly can't over think or read more into the neuro's silence, he'd already told you "that's not his department" when you mentioned Multiple Myeloma.....the simplest explanation is if the silence came after you continued talking about Multiple Myeloma or your blood test results, he just had nothing more to add beyond that it wasn't his department.
I'm glad your GP has actually pointed out that you don't have Myeloma, your Paraprotein Screen was negative so it was an unlikely situation, i was wondering why it was even mentioned actually, it is more of a worst case scenario with all the other differentials just being more likely. In my family we have lost everyone in the last 3 generations to cancer, i still don't worry about cancer with some of my over the top bloods, my odds are higher but worrying about what might never be is just no way to live in my opinion....
for your information:
"We all have antibodies. When your body is responding to infections, your plasma cells make five main types of antibody (also known as immunoglobulins) with different heavy chains called G, A, M, D or E. You might hear them called IgG, IgA, IgM, IgD, and IgE. The light chains are called either κ (kappa) or λ (lambda).
When you have myeloma you produce abnormal antibodies instead, called paraproteins. These antibodies can’t fight infections properly. You might hear a paraprotein also being called a monoclonal gammopathy, an M protein or an M-spike. The presence of paraprotein can be an important sign of myeloma. "
https://bloodwise.org.uk/understanding-blood-cancers/antibodies-paraproteins-and-myeloma-myeloma
MS is a different type of inflammation so get everything your thinking on that score out of your head, MS genuinely doesn't show up in your blood work, MS would realistically be a whole lot easier to dx if it actually showed up in blood tests, oh and just so you know if you read up about multiple myeloma, the lesions associated with myeloma are also a different type of lesion too, same words different meanings though.
Hope that helps......JJ
You truly can't over think or read more into the neuro's silence, he'd already told you "that's not his department" when you mentioned Multiple Myeloma.....the simplest explanation is if the silence came after you continued talking about Multiple Myeloma or your blood test results, he just had nothing more to add beyond that it wasn't his department.
I'm glad your GP has actually pointed out that you don't have Myeloma, your Paraprotein Screen was negative so it was an unlikely situation, i was wondering why it was even mentioned actually, it is more of a worst case scenario with all the other differentials just being more likely. In my family we have lost everyone in the last 3 generations to cancer, i still don't worry about cancer with some of my over the top bloods, my odds are higher but worrying about what might never be is just no way to live in my opinion....
for your information:
"We all have antibodies. When your body is responding to infections, your plasma cells make five main types of antibody (also known as immunoglobulins) with different heavy chains called G, A, M, D or E. You might hear them called IgG, IgA, IgM, IgD, and IgE. The light chains are called either κ (kappa) or λ (lambda).
When you have myeloma you produce abnormal antibodies instead, called paraproteins. These antibodies can’t fight infections properly. You might hear a paraprotein also being called a monoclonal gammopathy, an M protein or an M-spike. The presence of paraprotein can be an important sign of myeloma. "
https://bloodwise.org.uk/understanding-blood-cancers/antibodies-paraproteins-and-myeloma-myeloma
MS is a different type of inflammation so get everything your thinking on that score out of your head, MS genuinely doesn't show up in your blood work, MS would realistically be a whole lot easier to dx if it actually showed up in blood tests, oh and just so you know if you read up about multiple myeloma, the lesions associated with myeloma are also a different type of lesion too, same words different meanings though.
Hope that helps......JJ
Hi JJ,
I spoke with my GP. She said i don't have myeloma. She said I'm on the right focus. She said that's fine that i don't go to see an MS specialist until first receiving written answers.
I've got in contact with the hospital to say i would prefer to get his answers first and to put on hold the referral to an MS specialist until i receive them.
I said i will decide then if i need to travel to the MS specialist or see the neurologist I've asked questions from.
Hopefully JJ, all will be resolved then. Don't know how long i will be waiting for these answers. I think he said yesterday that it will take a bit of time. That's no problem.
Thanks for helping all this time and i hope you can forgive me for being a nuisance.
Marian
I spoke with my GP. She said i don't have myeloma. She said I'm on the right focus. She said that's fine that i don't go to see an MS specialist until first receiving written answers.
I've got in contact with the hospital to say i would prefer to get his answers first and to put on hold the referral to an MS specialist until i receive them.
I said i will decide then if i need to travel to the MS specialist or see the neurologist I've asked questions from.
Hopefully JJ, all will be resolved then. Don't know how long i will be waiting for these answers. I think he said yesterday that it will take a bit of time. That's no problem.
Thanks for helping all this time and i hope you can forgive me for being a nuisance.
Marian
Hi again JJ,
I am prepared for any outcome. I'm prepared to accept the outcome of this neurologists written answers. I'm prepared to accept all opinions and admit I'm wrong.
I'm sure that all will resolve.
Marian
I am prepared for any outcome. I'm prepared to accept the outcome of this neurologists written answers. I'm prepared to accept all opinions and admit I'm wrong.
I'm sure that all will resolve.
Marian
Hi aspen2,
I don't appreciate my medical results being lied about. Thank you for listening and commenting, as to the other members here also.
I will update you soon.
Marian
I don't appreciate my medical results being lied about. Thank you for listening and commenting, as to the other members here also.
I will update you soon.
Marian
Well I don't think it is okay to lie. My neuro
lied to me about several things. I'm guessing possible reasons are:
1. "Reassurance" - which is only reassuring of you
Are symptom free.
2. They think it's psychosomatic (although with positive tests and reflexes, I don't understand how).
3. Because they trained 50 years ago and still have a "god" complex ...
4. He didn't actually see the results?
Who knows ... But the effects of your anger towards him are seriously affecting your health now. You refuse to move on and let it go.
Your choice.
I'm out (again) for the same reasons Ess noted ... We've been over it all. For future readers of this thread, lest we seem impatient, this is the fourth thread in the "series".
Last thing ... Marian, the volunteers at ms forums generally have been disabled by their ms. They have time to contribute because they are not working any more. They struggle with vision issues, cognitive trouble, weakness (it takes me forever to check spelling and grammar now due to the previous two things), mind-bending fatigue, pain, etc. please go back and re read all the answers and actually hear them. You've worn us out :).
I would love to hear updates of future answers but please, no more second guessing what's gone on before ... We've all been there ourselves. We all had to learn to deal, either on our own or with help.
I'm hoping you can hear me on this ...
lied to me about several things. I'm guessing possible reasons are:
1. "Reassurance" - which is only reassuring of you
Are symptom free.
2. They think it's psychosomatic (although with positive tests and reflexes, I don't understand how).
3. Because they trained 50 years ago and still have a "god" complex ...
4. He didn't actually see the results?
Who knows ... But the effects of your anger towards him are seriously affecting your health now. You refuse to move on and let it go.
Your choice.
I'm out (again) for the same reasons Ess noted ... We've been over it all. For future readers of this thread, lest we seem impatient, this is the fourth thread in the "series".
Last thing ... Marian, the volunteers at ms forums generally have been disabled by their ms. They have time to contribute because they are not working any more. They struggle with vision issues, cognitive trouble, weakness (it takes me forever to check spelling and grammar now due to the previous two things), mind-bending fatigue, pain, etc. please go back and re read all the answers and actually hear them. You've worn us out :).
I would love to hear updates of future answers but please, no more second guessing what's gone on before ... We've all been there ourselves. We all had to learn to deal, either on our own or with help.
I'm hoping you can hear me on this ...
2 Comments
Hi Aspen2,
I have an update. Neurologist No1 telephoned me earlier.
He said that he just isn't sure enough if this is MS. He thinks i should see an MS specialist. He said he will give written answers to most of my questions. He said he would consider my ESR of 29, Normal. Also my ANA he would consider Normal.
He's just not sure if it's MS. He said that i could be right and he could be wrong. I mentioned Multiple Myeloma, simply because my GP said she would like to keep an eye on my bloods yearly regarding it. He said that's not his department. But when i mentioned Multiple Myeloma, he went quite quiet.
He understands how awful all of this is and the frustration it brings with it. He's just not sure. He said this MS specialist might do another Lumbar Puncture.
Now Don't get me wrong when i say this, but personally i am undecided about going to an MS specialist. I would appreciate your thoughts. Should i wait for his written answers and then decide if going to an MS specialist is still needed, or should i go and see the MS specialist?
I don't know? I welcome his call and his offer to refer me to an MS specialist, but i think the questions i have asked also maybe have an answer, which is why i asked them? It would save me the hassle of traveling and spending another small fortune for what potentially be sorted out in my own City.
Please Don't get me wrong here, I'm just undecided on whether to wait for his answers before i go to the MS specialist.
I would really appreciate your thoughts if you can.
Marian
I have an update. Neurologist No1 telephoned me earlier.
He said that he just isn't sure enough if this is MS. He thinks i should see an MS specialist. He said he will give written answers to most of my questions. He said he would consider my ESR of 29, Normal. Also my ANA he would consider Normal.
He's just not sure if it's MS. He said that i could be right and he could be wrong. I mentioned Multiple Myeloma, simply because my GP said she would like to keep an eye on my bloods yearly regarding it. He said that's not his department. But when i mentioned Multiple Myeloma, he went quite quiet.
He understands how awful all of this is and the frustration it brings with it. He's just not sure. He said this MS specialist might do another Lumbar Puncture.
Now Don't get me wrong when i say this, but personally i am undecided about going to an MS specialist. I would appreciate your thoughts. Should i wait for his written answers and then decide if going to an MS specialist is still needed, or should i go and see the MS specialist?
I don't know? I welcome his call and his offer to refer me to an MS specialist, but i think the questions i have asked also maybe have an answer, which is why i asked them? It would save me the hassle of traveling and spending another small fortune for what potentially be sorted out in my own City.
Please Don't get me wrong here, I'm just undecided on whether to wait for his answers before i go to the MS specialist.
I would really appreciate your thoughts if you can.
Marian
An ms specialist is your best bet. Take the referral. He has said he is unsure. An ms specialist is really the only one you can trust with an ms diagnosis.
If he is willing to send you answers, to admit he is unsure, I would trust he has your best interests at heart in suggesting a referral.
If he is willing to send you answers, to admit he is unsure, I would trust he has your best interests at heart in suggesting a referral.
Hi essdipity,
As i was reading over your points, i must correct one or two things. My GP knows me a long time, she doesn't agree it's psychological.
A neurologist chose to lie. He made that choice. This is why i read every report, and re read, every report, every letter over and over. Why? Not to self diagnose, but to put together what's evidence and what's not.
I said to this Board that something didn't sit right with me, regarding him, and how he assessed me for Demyelination. I said it from the beginning that the truth doesn't lie.
I like to get to the bottom of thing's. My choice, it may not be someone else's. But anyone who thinks I'm thick, will get the land of their life. He chose the wrong woman to lie about. He chose the wrong woman to mess with. I told you i stand up for myself. I left school at age 14. I don't have education further than that. I didn't need a text book to get me out of the nightmare i lived in, I don't need one now either to figure out my results, lies and being thrown from pillar to post.
Every excuse in the book can be thrown here to justify a lier. But one lie becomes another lie to cover up your first lie. I mean imagine if this were one of his own family members, would they like it?
Hippocratic Oath is what this guy took when becoming a physician. If you read that, he's did do wrong by me.
Marian
As i was reading over your points, i must correct one or two things. My GP knows me a long time, she doesn't agree it's psychological.
A neurologist chose to lie. He made that choice. This is why i read every report, and re read, every report, every letter over and over. Why? Not to self diagnose, but to put together what's evidence and what's not.
I said to this Board that something didn't sit right with me, regarding him, and how he assessed me for Demyelination. I said it from the beginning that the truth doesn't lie.
I like to get to the bottom of thing's. My choice, it may not be someone else's. But anyone who thinks I'm thick, will get the land of their life. He chose the wrong woman to lie about. He chose the wrong woman to mess with. I told you i stand up for myself. I left school at age 14. I don't have education further than that. I didn't need a text book to get me out of the nightmare i lived in, I don't need one now either to figure out my results, lies and being thrown from pillar to post.
Every excuse in the book can be thrown here to justify a lier. But one lie becomes another lie to cover up your first lie. I mean imagine if this were one of his own family members, would they like it?
Hippocratic Oath is what this guy took when becoming a physician. If you read that, he's did do wrong by me.
Marian
Hi Aspen2,
Lieing about a patient's results isn't justified in any land. I'm angry because there is no justification for this.
Can you explain why he lied about blood results?
Marian
Lieing about a patient's results isn't justified in any land. I'm angry because there is no justification for this.
Can you explain why he lied about blood results?
Marian
So, here's how I've scoped this out:
1) Much earlier in your life you were horribly abused in various ways. Somehow you overcame that. You put great emphasis on having done this by yourself, no outside help.
2) Time passes, presumably with the ups and downs most people face. We know nothing about this part of your life. What we do know is that in middle age you develop symptoms that might indicate some disease process, so you start going to doctors. You get no answers, despite consultation with at least 4 neurologists, also at least 1 general practitioner. You become frustrated. You save all your medical reports and read and re-read them. You research each report in hopes of finding some hidden meaning, or possibly to find that a doctor neglected an important follow-up.
3) You begin posting here (and possibly elsewhere), convinced the doctors have been wrong and negligent, and that in fact you have MS. Your only reason for such a fixation is that a few years back, one of the neurologists ordered tests that might reveal MS, but ultimately decided there was insufficient evidence, so dropped that line of inquiry. Your idea is that he was wrong and negligent, that a radiology report is the same as a diagnosis. And on and on.
4) No one on this forum supports your conclusions. You get scores of reactions, many patiently explaining how MS works, what can and cannot be concluded by MRI, what other issues you might try to address. Your response to all of these amounts to 'Yes, but,' which actually means you reject everything said.
5) Ultimately it comes out that because you once overcame a horrible experience, and did this with help from no one, that this entitles you to take this tack with anyone who disagrees, regardless of whether the disagreement is about a subject you actually know little about. You 'stand up for yourself,' and that to you means being right about every instinct regarding health, at the very least. This entitles you even to attack verbally others who are simply commenting on your own words. You fail to explain why you even bother to post in an interactive setting designed for mutual help, as it's clear you're not asking for help; you're doing nothing about whatever symptoms you currently have; you just want to be right.
6) Meanwhile, because someone in the mental health field assured you some years back that your symptoms are not psychologically-based (which may well be true or have been true), you have concluded that you don't now and never have needed intervention by a mental health counselor. Doing it yourself worked fine. Standing up for yourself is all that's necessary, and going after 'unbelievers' is justified, since you had terrible experiences earlier in life.
How's that working for ya?
Now you're back to trash-talking neuro number whatever. You said you'd cease and desist until you heard something back from him, and that lasted--what? 4 days?
And by the way, an ESR of 29 may be outside of typical bounds, but it's not likely to get much medical attention. These are just guidelines, not something written on high. A few years back mine was over 100, and that DID get attention, though the cause was never found, and it returned to normal slowly. I'm still here and doing as well as can be expected with MS.
This is where I bow out of this thread. Much sooner than I did the last one, my mistake then. You have rejected every single thing you've been told here, because you are RIGHT, and you have to stand up for yourself. Feel free.
1) Much earlier in your life you were horribly abused in various ways. Somehow you overcame that. You put great emphasis on having done this by yourself, no outside help.
2) Time passes, presumably with the ups and downs most people face. We know nothing about this part of your life. What we do know is that in middle age you develop symptoms that might indicate some disease process, so you start going to doctors. You get no answers, despite consultation with at least 4 neurologists, also at least 1 general practitioner. You become frustrated. You save all your medical reports and read and re-read them. You research each report in hopes of finding some hidden meaning, or possibly to find that a doctor neglected an important follow-up.
3) You begin posting here (and possibly elsewhere), convinced the doctors have been wrong and negligent, and that in fact you have MS. Your only reason for such a fixation is that a few years back, one of the neurologists ordered tests that might reveal MS, but ultimately decided there was insufficient evidence, so dropped that line of inquiry. Your idea is that he was wrong and negligent, that a radiology report is the same as a diagnosis. And on and on.
4) No one on this forum supports your conclusions. You get scores of reactions, many patiently explaining how MS works, what can and cannot be concluded by MRI, what other issues you might try to address. Your response to all of these amounts to 'Yes, but,' which actually means you reject everything said.
5) Ultimately it comes out that because you once overcame a horrible experience, and did this with help from no one, that this entitles you to take this tack with anyone who disagrees, regardless of whether the disagreement is about a subject you actually know little about. You 'stand up for yourself,' and that to you means being right about every instinct regarding health, at the very least. This entitles you even to attack verbally others who are simply commenting on your own words. You fail to explain why you even bother to post in an interactive setting designed for mutual help, as it's clear you're not asking for help; you're doing nothing about whatever symptoms you currently have; you just want to be right.
6) Meanwhile, because someone in the mental health field assured you some years back that your symptoms are not psychologically-based (which may well be true or have been true), you have concluded that you don't now and never have needed intervention by a mental health counselor. Doing it yourself worked fine. Standing up for yourself is all that's necessary, and going after 'unbelievers' is justified, since you had terrible experiences earlier in life.
How's that working for ya?
Now you're back to trash-talking neuro number whatever. You said you'd cease and desist until you heard something back from him, and that lasted--what? 4 days?
And by the way, an ESR of 29 may be outside of typical bounds, but it's not likely to get much medical attention. These are just guidelines, not something written on high. A few years back mine was over 100, and that DID get attention, though the cause was never found, and it returned to normal slowly. I'm still here and doing as well as can be expected with MS.
This is where I bow out of this thread. Much sooner than I did the last one, my mistake then. You have rejected every single thing you've been told here, because you are RIGHT, and you have to stand up for yourself. Feel free.
1 Comments
Hi essdipity,
Again thanks for your thoughts. I did receive therapy for my past experiences, but personally, this is my opinion no one else's. No psychiatrist or psychologist is ever going to be with you 24/7. I learned that alone i found my greatest strength when i couldn't get help, i had to fight the battle in my head alone from age 8-14. This is when i needed to help myself more than anyone else, so please understand that if I got out of that situation alone, i can tell the difference between psychological distress and physical illness. People might not understand this, if they haven't experienced it. My mind was tested severely, so I know the difference.
I understand that you think I'm not listening, but I'm listening loud and clear, and no i cannot agree that this isn't MS, or developing into MS. I can say with certainty that my visual disturbances and balance problems began in 2014, and i can say with certainty that this neurologist lied in his letter to my GP. I can say with certainty that this unacceptable.
I have not self diagnosed MS. Ok you want me to take the explanations here as no evidence to support MS. All i can say to that is we have a difference of opinion on the evidence.
I've taken on board that this could be so many other thing's, but the problem here is no neurologist referred me to another specialist for anything else, including my GP. With the exception of one, who sent me to a psychologist, but this same man lied. Not about one result, but three results.
So essdipity, time will tell what i do or don't have. Not this board, or me, but time. Neurologist no 1 made serious untrue written statements that, misled both myself and my GP.
I will hear him, and give him the chance to explain this. But i am very unhappy at how easily it was for him to lie, when evidence supports otherwise.
Marian
Again thanks for your thoughts. I did receive therapy for my past experiences, but personally, this is my opinion no one else's. No psychiatrist or psychologist is ever going to be with you 24/7. I learned that alone i found my greatest strength when i couldn't get help, i had to fight the battle in my head alone from age 8-14. This is when i needed to help myself more than anyone else, so please understand that if I got out of that situation alone, i can tell the difference between psychological distress and physical illness. People might not understand this, if they haven't experienced it. My mind was tested severely, so I know the difference.
I understand that you think I'm not listening, but I'm listening loud and clear, and no i cannot agree that this isn't MS, or developing into MS. I can say with certainty that my visual disturbances and balance problems began in 2014, and i can say with certainty that this neurologist lied in his letter to my GP. I can say with certainty that this unacceptable.
I have not self diagnosed MS. Ok you want me to take the explanations here as no evidence to support MS. All i can say to that is we have a difference of opinion on the evidence.
I've taken on board that this could be so many other thing's, but the problem here is no neurologist referred me to another specialist for anything else, including my GP. With the exception of one, who sent me to a psychologist, but this same man lied. Not about one result, but three results.
So essdipity, time will tell what i do or don't have. Not this board, or me, but time. Neurologist no 1 made serious untrue written statements that, misled both myself and my GP.
I will hear him, and give him the chance to explain this. But i am very unhappy at how easily it was for him to lie, when evidence supports otherwise.
Marian
Hi essdipity,
Glad you shared your thoughts. Inflammation essdipity can also come from MS, other than other diseases. essdipity, this neurologist lied in his letter to my GP. It's just not good enough. He said routine bloods were normal, ESR was normal. No enhancing lesions. Why would a consultant do this?
Marian
Glad you shared your thoughts. Inflammation essdipity can also come from MS, other than other diseases. essdipity, this neurologist lied in his letter to my GP. It's just not good enough. He said routine bloods were normal, ESR was normal. No enhancing lesions. Why would a consultant do this?
Marian
Ah give me a break. This neurologist i was his patient for six years. Abnormal blood results need further investigation. He didn't even tell me they were abnormalities in my blood or my GP either. So how we're we to know?
An explanation is needed from him, just why he chose not to make anyone aware of these abnormalities. As my GP said the other day, enough wasn't done to treat my symptoms and it's all very well to for him not to share information with my GP, only the bits he wishes to tell her like, no enhancing lesions, no neurological examination findings mentioned, he said all my blood results were normal. This is not justifiable. Sorry.
He wrote and it's in one of my previous posts. Routine Bloods on admission were normal. ESR was normal. This is to my GP. Enough said.
Marian
COMMUNITY LEADER
You are misreading or misunderstanding or over reading your results "320" actually means the antinuclear antibody (ANA) was still detectable at 1:320 parts of a dilution (1:80, 1:160, 1:320) and i repeat ANA has nothing what so ever to do with MS!
If you understood your thyroid condition more, you would be aware that a 320 ANA 'can be' caused by thyroid conditions, which you will recall was causing you problems around that time frame as you ended up having your thyroid removed. The most common cause of hyperthyroidism (over active) is actually the autoimmune disorder Graves’ disease, Hashimoto's (under active) is also autoimmune, thyroiditis though is usually viral but could produce immune response marker too. 320 can also be a false positive, drug induced etc 320 without a pattern noted eg speckled, defused etc it is not very specific to anything in particular....
I would suggest if you haven't actually been diagnosed with Graves, Hashimoto's or thyroiditis you discuss your thyroid condition and blood test results with your supportive GP or the ENT who dx your thyroid condition and resulting removal, to see if this is at all related and learn more.
Hope that helps, but that's honestly all i could give you on the subject.......JJ
If you understood your thyroid condition more, you would be aware that a 320 ANA 'can be' caused by thyroid conditions, which you will recall was causing you problems around that time frame as you ended up having your thyroid removed. The most common cause of hyperthyroidism (over active) is actually the autoimmune disorder Graves’ disease, Hashimoto's (under active) is also autoimmune, thyroiditis though is usually viral but could produce immune response marker too. 320 can also be a false positive, drug induced etc 320 without a pattern noted eg speckled, defused etc it is not very specific to anything in particular....
I would suggest if you haven't actually been diagnosed with Graves, Hashimoto's or thyroiditis you discuss your thyroid condition and blood test results with your supportive GP or the ENT who dx your thyroid condition and resulting removal, to see if this is at all related and learn more.
Hope that helps, but that's honestly all i could give you on the subject.......JJ
1 Comments
Hi JJ,
My thyroid results are fine, for over two years now. You know i was with my ENT surgeon recently. He's not concerned about my thyroid, neither is my GP, neither were any of the neurologists.
JJ, it could be a million and one thing's. But one thing is very clear, I've been misled. Now MS, or MS, there is no justification for lies. Simple as that.
Time will tell. I appreciate every explanation, comments, you all have made. I am listening, and you guys may be right. But there is an answer, because if there wasn't a person wouldn't lie, there is no reason to lie. A person lies to cover something up. That's what I know lieing to mean. Can you just lie for no reason?
I haven't lied to anyone, I've just stated facts. It doesn't make sense JJ.
Anyone would find this to be unacceptable.
Marian
My thyroid results are fine, for over two years now. You know i was with my ENT surgeon recently. He's not concerned about my thyroid, neither is my GP, neither were any of the neurologists.
JJ, it could be a million and one thing's. But one thing is very clear, I've been misled. Now MS, or MS, there is no justification for lies. Simple as that.
Time will tell. I appreciate every explanation, comments, you all have made. I am listening, and you guys may be right. But there is an answer, because if there wasn't a person wouldn't lie, there is no reason to lie. A person lies to cover something up. That's what I know lieing to mean. Can you just lie for no reason?
I haven't lied to anyone, I've just stated facts. It doesn't make sense JJ.
Anyone would find this to be unacceptable.
Marian
I should have added that anger at lack of answers (the appropriate target for your anger), can best be worked through with the help of a counsellor or therapist who deals with chronic illness.
Once again, 2014 is immaterial. And once again, I explained why contrast wasn't necessary -- you choose not to believe me. Activity doesn't matter if there are not enough lesions or they are the wrong shape, location, etc. if there was concern, even the radiologist would have suggested further imaging.
Concentrate on the now. Your answer will not come from rehashing anything from 2014, in particular what your neurologist did or didn't do.
Actually, come to think of it ... If the bloodwork was done before your LP, the blood work already suggested not likely ms.
Him doing the LP was actually more than he needed to do -- perhaps a last ditch effort to find you a dx (or he was using the LP to clarify another explanation for your symptoms.) in which case, he was being more on the ball than many neuros.
If the blood work was done after the LP it explains why he dropped the idea of ms. Not enough supportive evidence. Period. It doesn't matter if you disagree. Please notice I'm not saying "not ms" -- I'm saying not enough evidence for him, the neuro, in 2014. Having said that, your current bloodwork also does suggest "not ms".
You have a misconception of what neurologists do. As soon as tests results are leading away from ms, it is not their job to pursue what the out of range bloodwork means. They lose interest quickly. Some suggest other referrals. Many do not and its back on the GPs plate.
Stop blaming this neurologist. Let him off the hook. This is for your own sanity. Anger is justifiable in limbo, but yours is misplaced.
Concentrate on the now. Your answer will not come from rehashing anything from 2014, in particular what your neurologist did or didn't do.
Actually, come to think of it ... If the bloodwork was done before your LP, the blood work already suggested not likely ms.
Him doing the LP was actually more than he needed to do -- perhaps a last ditch effort to find you a dx (or he was using the LP to clarify another explanation for your symptoms.) in which case, he was being more on the ball than many neuros.
If the blood work was done after the LP it explains why he dropped the idea of ms. Not enough supportive evidence. Period. It doesn't matter if you disagree. Please notice I'm not saying "not ms" -- I'm saying not enough evidence for him, the neuro, in 2014. Having said that, your current bloodwork also does suggest "not ms".
You have a misconception of what neurologists do. As soon as tests results are leading away from ms, it is not their job to pursue what the out of range bloodwork means. They lose interest quickly. Some suggest other referrals. Many do not and its back on the GPs plate.
Stop blaming this neurologist. Let him off the hook. This is for your own sanity. Anger is justifiable in limbo, but yours is misplaced.
1 Comments
Hi aspen2,
If you can give me an explanation as to why a consultant would lie, about three results to mislead people, i would like to hear your thoughts.
I mean let off the hook, is like saying it's ok to lie? Can you explain??
Marian
If you can give me an explanation as to why a consultant would lie, about three results to mislead people, i would like to hear your thoughts.
I mean let off the hook, is like saying it's ok to lie? Can you explain??
Marian
Surely someone who reads her own MRI report and subsequently diagnoses MS in herself can also research the implication of blood results. There is nothing in these blood tests that points to MS at all. Inflammation in MS is limited to the central nervous system, and that's why it doesn't show up in the blood. Thus if you have something wrong that shows up in the blood it's not MS.
You should be asking your GP or you should be asking somewhere other than an MS forum. We only know about MS here.
You should be asking your GP or you should be asking somewhere other than an MS forum. We only know about MS here.
So... you've simply changed which medical result to fixate on? This isn't progress. Please get help.
1 Comments
Hi,
I'm not sure what you mean. I'm not fixated on anything, but as to what's causing my symptoms.
And i will get to the root of it. I will give this neurologist a chance to explain why he lied. But it's not acceptable without any explanation.
If anyone here can give an explanation why a consultant would lie, i would very much like to know your thoughts?
Marian
I'm not sure what you mean. I'm not fixated on anything, but as to what's causing my symptoms.
And i will get to the root of it. I will give this neurologist a chance to explain why he lied. But it's not acceptable without any explanation.
If anyone here can give an explanation why a consultant would lie, i would very much like to know your thoughts?
Marian
COMMUNITY LEADER
Please don't expect me to work them out for you or have an opinion on specific blood test results, I honestly don't know enough about blood test results beyond the basics, infection or inflammation is about all i know, you are better off speaking to your GP about the specific meaning of your blood tests of 2014...
1 Comments
Hi JJ,
ESR and ANA, were elevated. Autioantibody Screen Reults 2014.
Anti Nuclear Abs 320. Reference Range <80. This reading is high JJ. He should have followed this through. MS is an autoimmune disease also.
There is still inflammation happening in my body, two years in and no answer for this inflammation.
ANA 320, ESR 29. Evidence of inflammation, perhaps on my brain?
No wonder i m going round like i am, and this neurologist had evidence in my blood of abnormal readings and chose to do nothing about it. I think it's outrageous and i for one think he's obligated to give answers.
I understand JJ, i won't post my other blood results. The ones i posted are the abnormal ones anyway.
Thanks for your thoughts
Marian
ESR and ANA, were elevated. Autioantibody Screen Reults 2014.
Anti Nuclear Abs 320. Reference Range <80. This reading is high JJ. He should have followed this through. MS is an autoimmune disease also.
There is still inflammation happening in my body, two years in and no answer for this inflammation.
ANA 320, ESR 29. Evidence of inflammation, perhaps on my brain?
No wonder i m going round like i am, and this neurologist had evidence in my blood of abnormal readings and chose to do nothing about it. I think it's outrageous and i for one think he's obligated to give answers.
I understand JJ, i won't post my other blood results. The ones i posted are the abnormal ones anyway.
Thanks for your thoughts
Marian
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I still think you'd be better off 'seriously considering' taking a break from continuing to chase a dx at this moment in time, you've already had 3 neurological opinions since neuro 1 and you said neuro 3 was an MS specialising neuro....
You have consistently demonstrated an unwillingness to accept you've misunderstood MS related facts or acknowledge that you've got the wrong idea in your head about somethings and it's genuinely a mistake to believe that's a strength of character, when it's misguidedly to hang on to a thought despite everything mentioned that demonstrates the error of understanding....believe me it has nothing to do with schooling, we've got some incredible intelligent minds in my family, we all learn from our mistakes, we all learn from the desire to understand a subject we have an interest in, it's not about being proven right, it's about being willing to be wrong and understand why..
If you are not yet at the stage of being completely 'open minded' to what ever another neurologist is going to determine, and realistically consider neuro no.5 may not diagnose you with a neurological condition like MS either and how you're going to feel about it....if not at the stage of being ready and willing to fully accept what ever may come with another neurological opinion, in mho you're probably not yet in the right frame of mind to go through it all again.
So my advice, it might be more helpful to have the extra time it takes to receive neuro no.1's written responses, time to think, time to find your center and time to seriously consider if your ready to face the outcome, what ever that might be...
Hope that helps........JJ