Aa
Finally going for a second opinion
It has taken me forever to finally be able to go for a second opinion. Those of you who know me, know that I have increasing brain lesions and symptoms, but clear LPs, so my nuerologist wants to just continue the MRI's every 6 months. He at one point told me that I had the brain of a 60 year old (I'm 48), then told me I should be happy I don't have a brain tumor...that made me feel much better! I am going to Barnes in St Louis, they have a special MS clinic and I am very nervous. Can anyone tell me how to approach this. I don't want to screw up this chance to possibly get some positive outcomes by not asking the right questions or providing the right information. Sometimes I go in and just start pouring everything out and they look at me like I am a nut. I had a doctor back 20 years ago or so when this all started tell me that I just want to be sick! That has stuck with me to this day! All I know is I feel like **** more days than not, I sometimes walk like a drunk, no matter how many times I change my prescription I still can't see properly, I have zings and zaps that go through my brain and body and I can't remember the last time I didn't have a raging headache. Please give me some advice, if anyone has any.
Hi bambi and all.
Well i thought long and hard about going to see a second neuro and was persuaded finally against my better judgement.
I thought I should make sure that I went with as much ammunition as I only had 40 minutes to tell him about 3 years problems.
I paid for my medical notes. On those i found that i had symptoms from 1982.
Anyway that gem sealed my fate, as the neuro said if i had MS since 1982 he was sure there would be more stuff on my tests.
Well DOH brain lesions can heal so perhaps mine did just that.
However I do have lesions even he agreed with that..... and a positive VEP tests and a positive LP but the inflammation also showed in my blood which is a negative test result for MS. The inflammation in my blood could have been a virus nothing to do with anything a red herring. I could have it repeated but have declined once was enough not so much the procedure but I was ill for 3 weeks afterwards.
He said my symptoms were A typical of MS but didnt think I had MS. On my way out he mentioned CFS I nearly told him to go forth and multiply.
I feel really that if after months of tests the neurologist couldnt tell me exactly what was wrong that someone who had never met me could think I had MS in 40 minutes.
He did however say I should see a rheumatologist so my GP wrote to one and this rheumatologist said after looking at my notes that it was NEUROLOGY and didnt want to see me so I am non the wiser LOL.
Please look at this link about negative LP.
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
A LP is NOT used to diagnose MS it is used to eliminate other diseases.
Just because you didnt have a positive LP does not mean you dont have MS especially with all the other positive results.
I agree with everyone go in without any knowledge let them do the work. I think that is where I made my mistake.
Good luck. You deserve answers. xxxx big hugs. Mariax
Well i thought long and hard about going to see a second neuro and was persuaded finally against my better judgement.
I thought I should make sure that I went with as much ammunition as I only had 40 minutes to tell him about 3 years problems.
I paid for my medical notes. On those i found that i had symptoms from 1982.
Anyway that gem sealed my fate, as the neuro said if i had MS since 1982 he was sure there would be more stuff on my tests.
Well DOH brain lesions can heal so perhaps mine did just that.
However I do have lesions even he agreed with that..... and a positive VEP tests and a positive LP but the inflammation also showed in my blood which is a negative test result for MS. The inflammation in my blood could have been a virus nothing to do with anything a red herring. I could have it repeated but have declined once was enough not so much the procedure but I was ill for 3 weeks afterwards.
He said my symptoms were A typical of MS but didnt think I had MS. On my way out he mentioned CFS I nearly told him to go forth and multiply.
I feel really that if after months of tests the neurologist couldnt tell me exactly what was wrong that someone who had never met me could think I had MS in 40 minutes.
He did however say I should see a rheumatologist so my GP wrote to one and this rheumatologist said after looking at my notes that it was NEUROLOGY and didnt want to see me so I am non the wiser LOL.
Please look at this link about negative LP.
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
A LP is NOT used to diagnose MS it is used to eliminate other diseases.
Just because you didnt have a positive LP does not mean you dont have MS especially with all the other positive results.
I agree with everyone go in without any knowledge let them do the work. I think that is where I made my mistake.
Good luck. You deserve answers. xxxx big hugs. Mariax
You are right, Lu. Something is amiss. Sorry to hijack the thread...
Do you have copies of your medical records? What do your doctors say about why you cannot drive?
And, no truer words were written:
"having no answer is worse then being told it is something horrible. at least horrible i can work with and learn to cope."
And, you could.
Doctors need to give their patients all information about their health-they do not have the right to withold information because this can have irreparable consequences.
Do you have copies of your medical records? What do your doctors say about why you cannot drive?
And, no truer words were written:
"having no answer is worse then being told it is something horrible. at least horrible i can work with and learn to cope."
And, you could.
Doctors need to give their patients all information about their health-they do not have the right to withold information because this can have irreparable consequences.
I think you should go in with a clean slate. do not even offer up your old medical records and just give him the basics . have your symptoms documented and give them to him and make sure he actually reads them.
I am so glad you got the second opinion and you have finally gotten your answers. I know for myself I dont want to be sick but the truth is i am and having no answer is worse then being told it is something horrible. at least horrible i can work with and learn to cope.
di have been told over and over again there is nothing wrong with me. yet no doctor feels comfortable releasing me to drive.....well if there really is nothing then there should be no reason to put these restrictions on me. truth is they dont know the reason so they make me look like an idiot.
I am so sorry you had to go through this for so long. I hope you get all the answers you are looking for.
research well and go in with as much knowledge as you can if there is something you dont understand write it down and dont leave with out an understanding of it.
good luck
I am so glad you got the second opinion and you have finally gotten your answers. I know for myself I dont want to be sick but the truth is i am and having no answer is worse then being told it is something horrible. at least horrible i can work with and learn to cope.
di have been told over and over again there is nothing wrong with me. yet no doctor feels comfortable releasing me to drive.....well if there really is nothing then there should be no reason to put these restrictions on me. truth is they dont know the reason so they make me look like an idiot.
I am so sorry you had to go through this for so long. I hope you get all the answers you are looking for.
research well and go in with as much knowledge as you can if there is something you dont understand write it down and dont leave with out an understanding of it.
good luck
Forgot to add that the neuro's opinion about what was the cause of my problems was WRONG so we were right to demand that they not offer their opinion on the MRI order.
What a turnip ;)
What a turnip ;)
Hi Bambi
I am really glad you have gotten a second opinion.
I did not take any other medical personnel's interpretation of my tests or scans.
I believe if you are going for a second opinion the new neuro should make his own mind up and not be influenced by any previous opinion.
Once when I had scans ordered the neuro put his opinion as to the cause of my neurological problems on the radiology order beforehand. Well, we felt very strongly tht it was not appropriate for the neuro to 'lead' the radiologist or radiology team...
The purpose of the scans were to attempt to determine the cause of my problems, not to offer an opinion BEFORE they were done thus possibly leading the radiologist to come to a conclusion which was not actually his own opinion. So, we said something.
The neuro was livid but we stuck to our guns and we eventually got our way because we reminded this person that as the patient -they- worked for -me-...
We were told by a prominent neurologist that neurologists and the neurological community are not willing to contradict another consultant’s conclusions and that they consult with each other.. So, we took every precaution possible to get a fair and -objective- second opinion. And 3rd, and 4th...;)
Eventually, we got answers. I hope you do, too.
Do let us know how you get on.
I am really glad you have gotten a second opinion.
I did not take any other medical personnel's interpretation of my tests or scans.
I believe if you are going for a second opinion the new neuro should make his own mind up and not be influenced by any previous opinion.
Once when I had scans ordered the neuro put his opinion as to the cause of my neurological problems on the radiology order beforehand. Well, we felt very strongly tht it was not appropriate for the neuro to 'lead' the radiologist or radiology team...
The purpose of the scans were to attempt to determine the cause of my problems, not to offer an opinion BEFORE they were done thus possibly leading the radiologist to come to a conclusion which was not actually his own opinion. So, we said something.
The neuro was livid but we stuck to our guns and we eventually got our way because we reminded this person that as the patient -they- worked for -me-...
We were told by a prominent neurologist that neurologists and the neurological community are not willing to contradict another consultant’s conclusions and that they consult with each other.. So, we took every precaution possible to get a fair and -objective- second opinion. And 3rd, and 4th...;)
Eventually, we got answers. I hope you do, too.
Do let us know how you get on.
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