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Finding a good Neurologist
by sissy59
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sissy59
Female, 59 years
Weatherford - TX
Member since May 2008
Hi Quix
I am new to this site. I was a Pediatric nurse, until I got sick in 87,I had two back surgeries and two cancer surgeries then while I was in the hosp after my second cancer surgery I was terminated. I was told I was terminal so it did not much matter.
I started having sx several yrs ago I think but did not pay a lot of attention to them because I was always told they were back related. So when I started having actual "incidents" (do not want to call them flares)that caused several things at once to go wrong and it would last for a few days up to 3 mo I went to a neuro that my PCP sent me to because I insisted on finding out what was wrong with me. The neuro never did an exam at all He had me fill out 22 pages of an H & P .As soon as I sat down he said I was a little to old to develop MS and I do not look like I have MS. I handed him this report that was done the year before but I never seen until I picked up a copy of the MRI to take him, My PCP had said was normal....Then when I picked it up to take to him I saw the report for the first time. On my report from my MRI in 9-23 2005 it has this ;
A nonspecific approximately 7 mm signal lesion in the right calvarium is noted in the region of the diploic space. This may simply be due to an arachnoids granulation. This can be followed at clinical discretion. A neoplastic lesion such as a metastasis would be considered less likely taking into account the patient's history of seizures.
What does this mean ? Could this be a MS lesion ? It was not followed up on.
They have my Clinical History as Seizures ? I have never had a seizure !
The neurologist said he would be concerned IF I had a history of CANCER.
I HAVE HAD CANCER 2 X !!! Metastic Malignant Melanoma
It was on the report I gave him that he was pretending to be reading. I was so mad that I did not say a word I just kept my mouth shut and walked out.
A year later I was sent back to see him. My DH went with me. He did not even come out from behind his desk . He repeated that I was to old to be DX with MS and all that was wrong with me was RLS. He put me on Mirapex. When my DH insisted that there was something wrong with me ,the doc said
" Maybe you need to go to one of them Fancy Places Like the Mayo Clinic or something." My husband whom is very educated and smart stood up and was fixing to hit him . He was furious !! He was talking down to us.!!
So I refused to go back to see another Dr. I was so embarrassed. I had two more "incidents" The first was small and passed after 2 weeks. The second one I decided to do some investigating myself. So I visited the MS sites and investigated my SX. I did a lot of reading. You see my DH has MS he was DX 'd in 1988 . Never went back to the Dr. He does not tell anyone.
I went to a neuro that was very popular at the Hosp where I worked. I thought very highly of her but knew it would take me a long time to get in.
My pain clinic sent me to see her but I was already feeling so much better from my " incident". But I went ahead because I trusted her. I had my MRI with me that I had done in 2005 .Plus my diary of all my SX and problems. I did not reorganize her she had gained quite a bit of weight ( 75 to 100 ) and 20 yrs older. But that did not bother me at all . After all I have had a weight problem all my life and I was about her age.
As soon as she walked in the room and looked at me she said you do not have MS you are to old to be DX'd with MS and you are two fat. She asked me why I thought I had MS. ( by this time I was in tears).
I told her that when I told my PCP about my sx's ,like feeling like the whole right side of my body was wet when it was not. He said that it sounds like you something in your "brain is misfiring" I asked if it could be MS and he smiled and said" it could be". But he never ordered any tests or sent me to a neuro. That was in 2002 . Then the next year 2003 I voiced my concerns to a very Dear family friend who was quite up in age (mid 90's) but still very much with it, said that she was 90% sure it was MS but could not order tests because she strictly took care of the cowboy's out on Dolph Brisco's ranch. But made me promise to see a Neuro as soon as I got home.
Well she never examined me. But I had a wrist brace on for carpal tunnel and she asked me about that. She told me to get it fixed, have gastric by pass( she was bigger than me) and get some counseling. But she asked me back in 2 weeks!!! I made an appointment.
In the mean time I had my hand fixed. Asked about the by pass and was turned down as I was not a candidate . Plus got an appointment to see a therapist. I went back 2 days after I had my wrist done. She was even madder . She thought she was going to do my hand surgery .....I had no idea she had that in mind.
She dismissed me as her patient...
Oh this is way to long and it has taken me several days to write. I am sorry..I will try to condense it more.
In 2007 I had a really bad incident, cog fog, numbness, tingling,severe fatigue, unable to stay awake, depression, etc.. But after 4 weeks it went away and left very little residual. Back to another Neuro he said I do not have MS and the 2005 MRI was normal . He ordered another MRI It was normal . He did a nerve conduction test, I thought was going to be painful but I did not feel anything. He said I did not have RLS I had terrible muscle spasms in my legs 27/7 Put me on Neurontin over the next 6 mo he just increased it . Then said he could not find any thing wrong.
I had two more incidents in the next 6 mo. Ignored them, refused to go to the Dr.
Feb 2008 had a very bad one that scared my DH to death. I was so bad we thought I had a stroke MRI normal.My whole rt. side was numb,tingly and very painful.My rt eye went blurry when I got tired then it went to both eyes, then I had Dbl. vision and painful along with feeling swollen.. I could not remember a lot of things. Golf scoring (don't laugh I never miss my Tiger) was gone. I nearly burnt down the kitchen and did not remember, I could not remember numbers ,spelling etc...After a month My DH forced me back to the last Neuro. He looked at the MRI and did the nerve conduction test again but this time it hurt like hell..I had blood running my legs. My eyes were perfect. 20 / 20 with my glasses. Finally he said he could not find anything wrong with me. He was very impatient. Increased my Neurontin to 400 MG 9 X a Day. If I take that I will be a walking Zombie...
Sorry it is so long
Many Blessings
sissy59
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sissy59
Female, 59 years
Weatherford - TX
Member since May 2008
Hi Quix
I am new to this site. I was a Pediatric nurse, until I got sick in 87,I had two back surgeries and two cancer surgeries then while I was in the hosp after my second cancer surgery I was terminated. I was told I was terminal so it did not much matter.
I started having sx several yrs ago I think but did not pay a lot of attention to them because I was always told they were back related. So when I started having actual "incidents" (do not want to call them flares)that caused several things at once to go wrong and it would last for a few days up to 3 mo I went to a neuro that my PCP sent me to because I insisted on finding out what was wrong with me. The neuro never did an exam at all He had me fill out 22 pages of an H & P .As soon as I sat down he said I was a little to old to develop MS and I do not look like I have MS. I handed him this report that was done the year before but I never seen until I picked up a copy of the MRI to take him, My PCP had said was normal....Then when I picked it up to take to him I saw the report for the first time. On my report from my MRI in 9-23 2005 it has this ;
A nonspecific approximately 7 mm signal lesion in the right calvarium is noted in the region of the diploic space. This may simply be due to an arachnoids granulation. This can be followed at clinical discretion. A neoplastic lesion such as a metastasis would be considered less likely taking into account the patient's history of seizures.
What does this mean ? Could this be a MS lesion ? It was not followed up on.
They have my Clinical History as Seizures ? I have never had a seizure !
The neurologist said he would be concerned IF I had a history of CANCER.
I HAVE HAD CANCER 2 X !!! Metastic Malignant Melanoma
It was on the report I gave him that he was pretending to be reading. I was so mad that I did not say a word I just kept my mouth shut and walked out.
A year later I was sent back to see him. My DH went with me. He did not even come out from behind his desk . He repeated that I was to old to be DX with MS and all that was wrong with me was RLS. He put me on Mirapex. When my DH insisted that there was something wrong with me ,the doc said
" Maybe you need to go to one of them Fancy Places Like the Mayo Clinic or something." My husband whom is very educated and smart stood up and was fixing to hit him . He was furious !! He was talking down to us.!!
So I refused to go back to see another Dr. I was so embarrassed. I had two more "incidents" The first was small and passed after 2 weeks. The second one I decided to do some investigating myself. So I visited the MS sites and investigated my SX. I did a lot of reading. You see my DH has MS he was DX 'd in 1988 . Never went back to the Dr. He does not tell anyone.
I went to a neuro that was very popular at the Hosp where I worked. I thought very highly of her but knew it would take me a long time to get in.
My pain clinic sent me to see her but I was already feeling so much better from my " incident". But I went ahead because I trusted her. I had my MRI with me that I had done in 2005 .Plus my diary of all my SX and problems. I did not reorganize her she had gained quite a bit of weight ( 75 to 100 ) and 20 yrs older. But that did not bother me at all . After all I have had a weight problem all my life and I was about her age.
As soon as she walked in the room and looked at me she said you do not have MS you are to old to be DX'd with MS and you are two fat. She asked me why I thought I had MS. ( by this time I was in tears).
I told her that when I told my PCP about my sx's ,like feeling like the whole right side of my body was wet when it was not. He said that it sounds like you something in your "brain is misfiring" I asked if it could be MS and he smiled and said" it could be". But he never ordered any tests or sent me to a neuro. That was in 2002 . Then the next year 2003 I voiced my concerns to a very Dear family friend who was quite up in age (mid 90's) but still very much with it, said that she was 90% sure it was MS but could not order tests because she strictly took care of the cowboy's out on Dolph Brisco's ranch. But made me promise to see a Neuro as soon as I got home.
Well she never examined me. But I had a wrist brace on for carpal tunnel and she asked me about that. She told me to get it fixed, have gastric by pass( she was bigger than me) and get some counseling. But she asked me back in 2 weeks!!! I made an appointment.
In the mean time I had my hand fixed. Asked about the by pass and was turned down as I was not a candidate . Plus got an appointment to see a therapist. I went back 2 days after I had my wrist done. She was even madder . She thought she was going to do my hand surgery .....I had no idea she had that in mind.
She dismissed me as her patient...
Oh this is way to long and it has taken me several days to write. I am sorry..I will try to condense it more.
In 2007 I had a really bad incident, cog fog, numbness, tingling,severe fatigue, unable to stay awake, depression, etc.. But after 4 weeks it went away and left very little residual. Back to another Neuro he said I do not have MS and the 2005 MRI was normal . He ordered another MRI It was normal . He did a nerve conduction test, I thought was going to be painful but I did not feel anything. He said I did not have RLS I had terrible muscle spasms in my legs 27/7 Put me on Neurontin over the next 6 mo he just increased it . Then said he could not find any thing wrong.
I had two more incidents in the next 6 mo. Ignored them, refused to go to the Dr.
Feb 2008 had a very bad one that scared my DH to death. I was so bad we thought I had a stroke MRI normal.My whole rt. side was numb,tingly and very painful.My rt eye went blurry when I got tired then it went to both eyes, then I had Dbl. vision and painful along with feeling swollen.. I could not remember a lot of things. Golf scoring (don't laugh I never miss my Tiger) was gone. I nearly burnt down the kitchen and did not remember, I could not remember numbers ,spelling etc...After a month My DH forced me back to the last Neuro. He looked at the MRI and did the nerve conduction test again but this time it hurt like hell..I had blood running my legs. My eyes were perfect. 20 / 20 with my glasses. Finally he said he could not find anything wrong with me. He was very impatient. Increased my Neurontin to 400 MG 9 X a Day. If I take that I will be a walking Zombie...
Sorry it is so long
Many Blessings
sissy59
Hi, Sissy, Welcome to a kindred spirit. We caretakers of the tiny ones need to stick together. You have certainly found the spot where people have had horrible experiences with neurologists. Yours rank right up there with the worst. If you have doing any reading on the forum, which I recommend, you know that MS can present all the way into the 70's. My first symptoms were at 53.
It certainly does sound like you are having neurological incidents of some kind. But, it sounds like you were dismissed before anyone gave you a proper workup, I missed any MRI of your spinal cord. Lumbar spine doesn't count. You should have had a whole wartload of blood tests to rule out MS Mimics. Basically any doctor that dismisses or demeans you needs to be "kicked to the curb!" as our T-Lynn says. There are smarter, better and nicer neuros out there.
It does sound like you have a negative MRI of the brain. The report from 09/05 only speaks of an abnormality of some sort in the skull itself, likely related to the arachnoid membrane. This would not be related to MS. We know that people - a small number, maybe 1 in 20 - has MS with a negative MRI. I wrote up a little explanation of how this can occur. It is in the Health Pages. Look in the upper right of the page when you are on the Discussion part of the forum for the words "Health Pages." The article is called something like "How You Can Have MS with a Negative MRI."
Two tests that might offer some information would be two of the Evoked Potentials, the VEP (Visual Evoked Potential) and the SSEP (the SomatoSensory Evoked Potential).
The other entity that could suggest your symptoms is Migraine Variant, which can occur without headache.
Sissy, now that you and I have written so much, I think this is a good discussion for the forum. They need to read specific discussions of specific problems. If you will highlight and copy your remark and then Post it as a new Question on the forum, I would copy and paste my answer. Then more people can benefit. Would that be okay?
Welcome to our forum. We have many people as insulted and frustrated as you.
Quix
It certainly does sound like you are having neurological incidents of some kind. But, it sounds like you were dismissed before anyone gave you a proper workup, I missed any MRI of your spinal cord. Lumbar spine doesn't count. You should have had a whole wartload of blood tests to rule out MS Mimics. Basically any doctor that dismisses or demeans you needs to be "kicked to the curb!" as our T-Lynn says. There are smarter, better and nicer neuros out there.
It does sound like you have a negative MRI of the brain. The report from 09/05 only speaks of an abnormality of some sort in the skull itself, likely related to the arachnoid membrane. This would not be related to MS. We know that people - a small number, maybe 1 in 20 - has MS with a negative MRI. I wrote up a little explanation of how this can occur. It is in the Health Pages. Look in the upper right of the page when you are on the Discussion part of the forum for the words "Health Pages." The article is called something like "How You Can Have MS with a Negative MRI."
Two tests that might offer some information would be two of the Evoked Potentials, the VEP (Visual Evoked Potential) and the SSEP (the SomatoSensory Evoked Potential).
The other entity that could suggest your symptoms is Migraine Variant, which can occur without headache.
Sissy, now that you and I have written so much, I think this is a good discussion for the forum. They need to read specific discussions of specific problems. If you will highlight and copy your remark and then Post it as a new Question on the forum, I would copy and paste my answer. Then more people can benefit. Would that be okay?
Welcome to our forum. We have many people as insulted and frustrated as you.
Quix
Thank You all for your warm welcome's. It is hard to continue when you know the Dr's think you are just putting on. I do not have time for that, my life is very full. I have many things to do but I am so tired most days. I can barely get 1 foot in front of the other.
I just want to know what is going on so I can get on with what I want to do.
I am not sure how to get around here . I feel like I am lost in cyber space. It has cool graphics. I am looking foward to bumping into more people here LOL .
I just finished a very strange neuro psych test, it was just like the test I took to get into nursing school !! I passed that one with flying colors ... Did any one else take one like that?? It really did not seem very leget. pardon my spelling it and numbers are something that seems to have fallen out of my head when I had this last incident about 3 mo ago.
Many Blessings to all and sorry I seem a little foggy to day.
Sissy59
I just want to know what is going on so I can get on with what I want to do.
I am not sure how to get around here . I feel like I am lost in cyber space. It has cool graphics. I am looking foward to bumping into more people here LOL .
I just finished a very strange neuro psych test, it was just like the test I took to get into nursing school !! I passed that one with flying colors ... Did any one else take one like that?? It really did not seem very leget. pardon my spelling it and numbers are something that seems to have fallen out of my head when I had this last incident about 3 mo ago.
Many Blessings to all and sorry I seem a little foggy to day.
Sissy59
wow... sorry to hear you are having such a difficult time with Dr... I have been there too and understand how it can really effect you and your family.
I feel like I'm on a roller coaster for the last three years, still all the specialist say something is wrong, but they don't know what it is?? So, I have to wait for it to get worst or something more shows on the tests... Welcome to our forum...keep in touch... we are here to help each other through all the craziness in this .. take care
andie
I feel like I'm on a roller coaster for the last three years, still all the specialist say something is wrong, but they don't know what it is?? So, I have to wait for it to get worst or something more shows on the tests... Welcome to our forum...keep in touch... we are here to help each other through all the craziness in this .. take care
andie
Hi Sis,
Thank you for joining us. I'm still reading through your story here - I have to read through things over and over these days in order to absorb. But, didn't want you to have to wait another minute for you "WELCOME."
We are family here, and I'm so glad you've visited. I know you will find comfort and support here from all of our members. Please know the others will join in as soon as they can. We are here for you, promise. . . .
Again, a big welcome to you,
ttys,
SL
Thank you for joining us. I'm still reading through your story here - I have to read through things over and over these days in order to absorb. But, didn't want you to have to wait another minute for you "WELCOME."
We are family here, and I'm so glad you've visited. I know you will find comfort and support here from all of our members. Please know the others will join in as soon as they can. We are here for you, promise. . . .
Again, a big welcome to you,
ttys,
SL
Hi, nice to meet you. I don't have much advise to offer you because I am still in between dx's myself . I am sorry for all of the bad experiences that you have faced with the doctors you have seen. I have had a few bad ones myself and can totally relate to this.
For the first 6 months I was not believed about my sudden vision loss, until the visual field test showed a defect. The first doctors I saw were trying to pass it off as anxiety because I have a history of panic disorder. needless to say these are no longer my doctor. The opthalmologist who done the visual field test, upon my insistance is one of the ones who more or less told me I was making it all up. His opinion changed drastically once he saw the blind spot on the test.
I went through a lot of needless distress at the hands of these earlier doctors who were ignorant about the fact that sudden vision loss is obviously a neurological problem and not a physiciatric one. I moved on until I found a doctor who took this seriously. My MRI showed 10 white matter lesions, apparently not anxiety!
I know how painful and confusing it is to go to a doctor for help only to be dismissed and abused. My advice is, no one else knows your body better than you do, so keep pushing these doctors until they pay attention. And if they don't then find a new doctor who will.
I hope you and your husband will stick around here. There is a lot to be learned here and also a lot of friends and support for you both.
Santana
For the first 6 months I was not believed about my sudden vision loss, until the visual field test showed a defect. The first doctors I saw were trying to pass it off as anxiety because I have a history of panic disorder. needless to say these are no longer my doctor. The opthalmologist who done the visual field test, upon my insistance is one of the ones who more or less told me I was making it all up. His opinion changed drastically once he saw the blind spot on the test.
I went through a lot of needless distress at the hands of these earlier doctors who were ignorant about the fact that sudden vision loss is obviously a neurological problem and not a physiciatric one. I moved on until I found a doctor who took this seriously. My MRI showed 10 white matter lesions, apparently not anxiety!
I know how painful and confusing it is to go to a doctor for help only to be dismissed and abused. My advice is, no one else knows your body better than you do, so keep pushing these doctors until they pay attention. And if they don't then find a new doctor who will.
I hope you and your husband will stick around here. There is a lot to be learned here and also a lot of friends and support for you both.
Santana
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