Aa
question for those having a dx of ms
Innumerable scattered foci of increased T2/FLAIR signal in the periventricular, subcortical and deep white matter. None of these demonstrate enhancement or restricted diffusion. The differential includes demyelination, vasculitis, Lyme disease, chronic small vessel changes.
Has any one had that as their differential and then had an LP come back with a negative reading when tested for MS and the other diseases then have your neurologist say those lesions are nothing?
I do have a cervical spinal cord issue with a metal plate. I know that it is a problem. However I have had a regular GP and this same neurologist say that the symptoms I am having arent all because of my cervical issues.
I am having a hard time with first being told that the lesions are serious and then being told by the same neurologist that they are nothing and dont have any more MRI's. I am practically in tears not because the LP came back negative but because I know my body and I know something is wrong.
I am not a person who "likes" being sick and is always questioning a sneeze. I have always toughed things out and never been a complainer. Any thoughts suggestions I would be very grateful for.
Thank you
Has any one had that as their differential and then had an LP come back with a negative reading when tested for MS and the other diseases then have your neurologist say those lesions are nothing?
I do have a cervical spinal cord issue with a metal plate. I know that it is a problem. However I have had a regular GP and this same neurologist say that the symptoms I am having arent all because of my cervical issues.
I am having a hard time with first being told that the lesions are serious and then being told by the same neurologist that they are nothing and dont have any more MRI's. I am practically in tears not because the LP came back negative but because I know my body and I know something is wrong.
I am not a person who "likes" being sick and is always questioning a sneeze. I have always toughed things out and never been a complainer. Any thoughts suggestions I would be very grateful for.
Thank you
That's great - doctors are here to help you, not to make you feel like less of a person. Hang in there!
Thought I would let everyone know that after seeing my GP today and telling him what went on with the neuro that he has set me up with a different neurologist and said that he too isnt comfortable without a 2nd opinion.
This still could lead to MS or it could lead to vascular issues. I am so grateful that I have a GP who actually listens to his patients.
Again thank you all the support you give everyone in this community is amazing. The advice and letting others know the things yourselves have been thru is so helpful.
Theresa
This still could lead to MS or it could lead to vascular issues. I am so grateful that I have a GP who actually listens to his patients.
Again thank you all the support you give everyone in this community is amazing. The advice and letting others know the things yourselves have been thru is so helpful.
Theresa
Thank You all for your comments. I am going today to see my GP and I am asking him to have a heart to heart type talk. I want him to see the "real" me who has not let some of the worst things life can hand a person stop me.
But this however has hit me hard I have gone from a hard working person who no matter how crappy i have felt I pushed thru. This is however is kicking my rear and I dont like what its doing to me and I want answers.
So off I go and pray my GP really really listens to me. when the mri came back my GP took the results very seriously and asked if the neuro put me on low does aspirins incase the lesions could turn out to be vascular. I said No and he was shocked and told me to start taking them immediately. So I believe he sees also that this neuro is not doing me any favors.
Again thank you each and every one of you for giving me the strength to not just give up. You are all a blessing for me.
But this however has hit me hard I have gone from a hard working person who no matter how crappy i have felt I pushed thru. This is however is kicking my rear and I dont like what its doing to me and I want answers.
So off I go and pray my GP really really listens to me. when the mri came back my GP took the results very seriously and asked if the neuro put me on low does aspirins incase the lesions could turn out to be vascular. I said No and he was shocked and told me to start taking them immediately. So I believe he sees also that this neuro is not doing me any favors.
Again thank you each and every one of you for giving me the strength to not just give up. You are all a blessing for me.
When I see any doctor I try to remember that they are a service provider & nothing more. If you saw a plumber for a blocked drain & they said "oh it's nothing" & just leave the drain blocked would you use the same plumber again?
I think sometimes docs put themselves on a pedestal higher than us mere mortals but why is this. They may have had a brilliant education but it does not make them any better than you or I. If a doctor speaks to you badly, is rude or isn't doing his job then don't be afraid to speak up for yourself. You are paying him to find a cause of your symptoms & remind him of that.
Good luck.
Karry.
I think sometimes docs put themselves on a pedestal higher than us mere mortals but why is this. They may have had a brilliant education but it does not make them any better than you or I. If a doctor speaks to you badly, is rude or isn't doing his job then don't be afraid to speak up for yourself. You are paying him to find a cause of your symptoms & remind him of that.
Good luck.
Karry.
Get a second opinion...or third and fourth if needed.
I am sorry but this doctor sounds like a quack! I was diagnosed quickly by a general neurologist. I had a clean LP. I had ruled in based on my symptoms and having lesions in my brain, c-spine, and t-spine and eliminating all the mimics.
I don't know why so many doctors still go by that old criteria that the LP must show O bands.
I understand years long watching and waiting is the norm around here. I guess I was "lucky" to be practically diagnosed as probably MS on my first visit and then confirmed within 3 weeks.
Hang in there!
I am sorry but this doctor sounds like a quack! I was diagnosed quickly by a general neurologist. I had a clean LP. I had ruled in based on my symptoms and having lesions in my brain, c-spine, and t-spine and eliminating all the mimics.
I don't know why so many doctors still go by that old criteria that the LP must show O bands.
I understand years long watching and waiting is the norm around here. I guess I was "lucky" to be practically diagnosed as probably MS on my first visit and then confirmed within 3 weeks.
Hang in there!
Part 2 of my comment to you.
again Thank You. I just finished reading "lies my neuro told me". Made me laugh and made me feel like i wasnt a "sinner" or "deserving" of the lesions because I smoke. (which is no more than half a pk per day) More after I see the neuro.
again Thank You. I just finished reading "lies my neuro told me". Made me laugh and made me feel like i wasnt a "sinner" or "deserving" of the lesions because I smoke. (which is no more than half a pk per day) More after I see the neuro.
Thank you for sharing your experiences and giving the encouragement to continue on!
I have pretty much been awake most of the night trying to sort thru my mind, how can lesions be nothing and how to just forget about them.
As I have said I do have cervical issues. Alot of my problems are related to that I am sure. I do know my body tho and some of these other symptoms just arent right.
I told him about the night before having a black spot in my vision, It lasted for an hour and half which after that I went to bed. when I got up there was no black spot in my vision on my right eye. He blew that off and didnt even act like it was abnormal.
I have been in his office having hand tremors so bad not only could I not fill out the amount of the office visit on my check, I had to have the gal at the front desk fill out the amount for me.
This is so hard because while I dont want MS or anything as far as that goes I know something isnt right.
After seeing the Neuro/donkey ;) yesterday and his telling me that the lesions are nothing to forget them that the LP was negative I called my GP to make an appt to see him this friday. I am scared he is going to think I am nuts and just wanting to be sick. I hope not he is the one that felt there was more wrong than my cervical problems.
Thank you. Karry.
I have pretty much been awake most of the night trying to sort thru my mind, how can lesions be nothing and how to just forget about them.
As I have said I do have cervical issues. Alot of my problems are related to that I am sure. I do know my body tho and some of these other symptoms just arent right.
I told him about the night before having a black spot in my vision, It lasted for an hour and half which after that I went to bed. when I got up there was no black spot in my vision on my right eye. He blew that off and didnt even act like it was abnormal.
I have been in his office having hand tremors so bad not only could I not fill out the amount of the office visit on my check, I had to have the gal at the front desk fill out the amount for me.
This is so hard because while I dont want MS or anything as far as that goes I know something isnt right.
After seeing the Neuro/donkey ;) yesterday and his telling me that the lesions are nothing to forget them that the LP was negative I called my GP to make an appt to see him this friday. I am scared he is going to think I am nuts and just wanting to be sick. I hope not he is the one that felt there was more wrong than my cervical problems.
Thank you. Karry.
My first Neuro who was less than desirable made me feel like I was making a fuss over nothing. He couldn't be bothered much with my Neuro exam blaming my pain from my RA as reasons for not doing a proper exam. I switched off in the first few minutes & could see I was wasting my time.
Please get rid of that scrawny rat & move onto a better one. I did & I got a diagnosis without the hassle. I asked my new Neuro on the first visit if the lesions are normal for age or from migraines etc & he said not with the neurological deficits I have. He also said it was on a poor quality machine so I changed from a 1 tesla MRI to a 3 tesla MRI & it was scary to see all of that in my brain & spinal cord.
At the end of the day my Neuro says if you have deficits on your Neuro exams, symptoms etc then they need to be searching for a cause. Please read the health page "the lies my Neuro told me" (if you haven't already) this will give you a good laugh. I didn't ever want to see another Neuro after my first experience but after a while of having increased health issues I realised I had to get back in the saddle & find another donkey / Neuro.
Trust in yourself.
Karry.
Please get rid of that scrawny rat & move onto a better one. I did & I got a diagnosis without the hassle. I asked my new Neuro on the first visit if the lesions are normal for age or from migraines etc & he said not with the neurological deficits I have. He also said it was on a poor quality machine so I changed from a 1 tesla MRI to a 3 tesla MRI & it was scary to see all of that in my brain & spinal cord.
At the end of the day my Neuro says if you have deficits on your Neuro exams, symptoms etc then they need to be searching for a cause. Please read the health page "the lies my Neuro told me" (if you haven't already) this will give you a good laugh. I didn't ever want to see another Neuro after my first experience but after a while of having increased health issues I realised I had to get back in the saddle & find another donkey / Neuro.
Trust in yourself.
Karry.
lol you got me to laugh. On a day like today I didnt think that would be possible.
When I was going through the process of getting diagnosed, I woke up one day and got out of bed, and my right leg collapsed under me. I couldn't feel it. My old neuro - the one that I dumped - told me that was perfectly normal, and it happened to him all the time.
I thought jeez, you better go to a doctor, that doesn't sound good!
So yeah, there's a lot of losers out there. Don't despair - it'll take a while, but you can find good ones.
I thought jeez, you better go to a doctor, that doesn't sound good!
So yeah, there's a lot of losers out there. Don't despair - it'll take a while, but you can find good ones.
Thank You Alex, after todays appt i was really starting to question myself. Sounds like you and I both have gotten neurologists that arent always so alert to every disease. So I guess now i will search for one who specializes in MS.
Trust yourself. I took years to be diagnosed with MS and six years to be diagnosed with Cancer. My GP used to think I was a hypochondriac now she takes me seriously. Neurologists specialize. I went to one who specialized in headaches she missed my MS. I then went to a MS Specialist he found the MS. It did take another year and a half of testing. Many people have negative LPs. I was told by my first Neurologist I had one of to fatal things. He was wrong on both. Sometimes they guess.
Alex
Alex
Thank you both Poppy and jensequitur,
Its like he had/has me on an emotional rollercoaster. first he tells me it all has to do with my cervical issues then does the mri and says "this is serious and I will help you find out what is wrong" to having a negative LP and his back to saying no ms no lyme no lupus just forget about those lesions they are nothing.
I put trust in him and found out heck he isnt any different than most in this world. He left me feeling like i am no better than a hypochondriac. Little does he know that I dont hardly go anywhere these days because of the way I walk. I stay away from the public as much as possible. I was never that way before.
I told him that last night from 7pm up until I went to bed that I had a black spot in my right eyes vision and he shrugged that off. Made me feel like I shouldnt have brought it up.
Its like he had/has me on an emotional rollercoaster. first he tells me it all has to do with my cervical issues then does the mri and says "this is serious and I will help you find out what is wrong" to having a negative LP and his back to saying no ms no lyme no lupus just forget about those lesions they are nothing.
I put trust in him and found out heck he isnt any different than most in this world. He left me feeling like i am no better than a hypochondriac. Little does he know that I dont hardly go anywhere these days because of the way I walk. I stay away from the public as much as possible. I was never that way before.
I told him that last night from 7pm up until I went to bed that I had a black spot in my right eyes vision and he shrugged that off. Made me feel like I shouldnt have brought it up.
Don't worry about it Theresalp, just find a new Neurologist. It seems that Neurologists can interpret MRI's any which way they want to, probably depends on the weather lol. I had one doctor tell me that my MRI with numerous lesions was "definitely not normal, but didn't scream MS" one day then another tell me "don't worry, everyone has spots like yours".
I've also had a negative LP but was told by someone knowledgeable in this area that it was probably too early for it to have shown anything anyway, or it might never show positive O-bands.
I don't yet have an official diagnosis but we all know it's MS and just get on with life, content in the knowledge that one day it will be made 'official'.
I've also had a negative LP but was told by someone knowledgeable in this area that it was probably too early for it to have shown anything anyway, or it might never show positive O-bands.
I don't yet have an official diagnosis but we all know it's MS and just get on with life, content in the knowledge that one day it will be made 'official'.
i am about in tears he told me that the mri was serious and he would help me find out what was wrong. I do not understand how lesions can be serious one moment to ahh forget them they are nothing when the LP came back negative. I dont understand.
It can be really hard to find a good neurologist that knows what they're doing. I don't know why. The lesions are not nothing. Whatever's going on, he/she isn't doing you any favors.
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