Aa
ms, fibro, or all in my head?
I have mri results from 2005 that I would like to have help understanding. The doctor I had at that time just blew me off. Since then, I have been diagnosed with fibromyalgia and trigeminal neuralgia, along with a host of psychiatric labels such as somatoform, anxiety, depression, etc. I am having a lot of symptoms lately and cannot even stand going to work right now. I just remembered this mri report from 2005 and am wondering if I should ask my doctor to pursue the possibility of MS just to be sure.
The report says:
The fourth ventricle lies in a normal midline position. The ventricles and sulci are within normal limits. There are small foci of increased T2 signal in the periventricular white matter in the right frontal and left parietal lobes. The possibility of demyelinating process such as multiple sclerosis needs to be excluded. There is hypointense or hyperintense mass, and no midline shift. Normal flow void is demonstrated in the visualized intracranial vessels. The region of the seventh and eighth cranial nerves is well seen and is unremarkable. There is no abnormal signal intensity on the diffusion weighted images. There is no abnormal enhancement in the post contrast images.
Impression: 1. Punctate foci of increased T2 signal in the periventricular wihite matter. Rule out demyelinating process.
They also did a spinal tap at that time and didn't find whatever it was they were looking for there. Two drs. told me they didn't believe I had ms and they didn't want to write it on paper because once I had that dx i would basically be uninsurable. They both blamed the lesions on smoking and migraines.
Right now I am having symptoms of blurred vision off and on, strange sensations on my skin, feel like someone is hugging me around my chest all the time and feel short of breath, foot feels like i have a toe in an electric socket if something touches it, feel like a hair is touching my leg in one spot but there is nothing there, and for the past 2 days, feel like there are ants or something crawling on me or under my skin. I am having a lot of anxiety, depression, and irritability. Pretty sure I'm going crazy and I'm seeing a new counselor and psychiatrist next week. I'm afraid to bring up the ms thing because my old psych dr. has labeled me somatoform pain disorder. I see my primary at 4:00 today and will show him this old report. He usually is really good about listening to me but if not, should I push for a new mrI and do you believe the old report shows enough to dx ms without the spinal tap being positive?
The report says:
The fourth ventricle lies in a normal midline position. The ventricles and sulci are within normal limits. There are small foci of increased T2 signal in the periventricular white matter in the right frontal and left parietal lobes. The possibility of demyelinating process such as multiple sclerosis needs to be excluded. There is hypointense or hyperintense mass, and no midline shift. Normal flow void is demonstrated in the visualized intracranial vessels. The region of the seventh and eighth cranial nerves is well seen and is unremarkable. There is no abnormal signal intensity on the diffusion weighted images. There is no abnormal enhancement in the post contrast images.
Impression: 1. Punctate foci of increased T2 signal in the periventricular wihite matter. Rule out demyelinating process.
They also did a spinal tap at that time and didn't find whatever it was they were looking for there. Two drs. told me they didn't believe I had ms and they didn't want to write it on paper because once I had that dx i would basically be uninsurable. They both blamed the lesions on smoking and migraines.
Right now I am having symptoms of blurred vision off and on, strange sensations on my skin, feel like someone is hugging me around my chest all the time and feel short of breath, foot feels like i have a toe in an electric socket if something touches it, feel like a hair is touching my leg in one spot but there is nothing there, and for the past 2 days, feel like there are ants or something crawling on me or under my skin. I am having a lot of anxiety, depression, and irritability. Pretty sure I'm going crazy and I'm seeing a new counselor and psychiatrist next week. I'm afraid to bring up the ms thing because my old psych dr. has labeled me somatoform pain disorder. I see my primary at 4:00 today and will show him this old report. He usually is really good about listening to me but if not, should I push for a new mrI and do you believe the old report shows enough to dx ms without the spinal tap being positive?
I READ THE THINGS YOU WROTE ON THE LINKS YOU PROVIDED. I ALSO READ ALL THE RESPONSES TO WHAT YOU WROTE. I LEARNED SOOOOO MUCH!
I AM SO GLAD I FOUND THIS COMMUNITY. I FEEL BETTER ALREADY.
THE SMOKING THING REMINDED ME THAT THE NEURO WHO LOOKED AT MY 2005 SAID THE LESIONS WERE PROBABLY FROM SMOKING AND THE MIGRAINES I'VE HAD SINCE I WAS 3 YEARS OLD. HE IS ONE OF THE DOCS THAT SAID HE DIDN'T WANT TO DX MS BECAUSE OF THE INSURANCE NIGHTMARE.
SO, I THINK YOU SAID THEY COULD MAYBE TELL THE DIFFERENCE BETWEEN LESIONS FROM SMOKING? WHAT ABOUT LESIONS FROM MIGRAINES? AND IF NOT, I SHOULD JUST REMIND THEM THAT THOSE TYPES OF LESIONS DO NOT CAUSE CNS SX LIKE I'M HAVING? CORRECT?
WOW. HAVING A HARD TIME WITH MEMORY, VISION, SCATTERED THOUGHTS THIS MORNING. FINGERS R NOT OBEYING ME ON THE KEYBOARD. SORRY
DEE
I AM SO GLAD I FOUND THIS COMMUNITY. I FEEL BETTER ALREADY.
THE SMOKING THING REMINDED ME THAT THE NEURO WHO LOOKED AT MY 2005 SAID THE LESIONS WERE PROBABLY FROM SMOKING AND THE MIGRAINES I'VE HAD SINCE I WAS 3 YEARS OLD. HE IS ONE OF THE DOCS THAT SAID HE DIDN'T WANT TO DX MS BECAUSE OF THE INSURANCE NIGHTMARE.
SO, I THINK YOU SAID THEY COULD MAYBE TELL THE DIFFERENCE BETWEEN LESIONS FROM SMOKING? WHAT ABOUT LESIONS FROM MIGRAINES? AND IF NOT, I SHOULD JUST REMIND THEM THAT THOSE TYPES OF LESIONS DO NOT CAUSE CNS SX LIKE I'M HAVING? CORRECT?
WOW. HAVING A HARD TIME WITH MEMORY, VISION, SCATTERED THOUGHTS THIS MORNING. FINGERS R NOT OBEYING ME ON THE KEYBOARD. SORRY
DEE
COMMUNITY LEADER
Hey Dee,
I highly recommend reading those links Quix gave you, if you need a laugh definitely read Lies my neuro told me, it can be black humor but it is a hoot as well as eye opening.
I do hope your answers come soon, I will look out for an update from you :-)
Cheers........JJ
I highly recommend reading those links Quix gave you, if you need a laugh definitely read Lies my neuro told me, it can be black humor but it is a hoot as well as eye opening.
I do hope your answers come soon, I will look out for an update from you :-)
Cheers........JJ
WOW! I HAVE JUST SMILED FOR THE FIRST TIME IN WEEKS...THANKS TO ALL OF YOU!!
JJ- U DID SUM IT UP CORRECTLY. NOT ONLY AM I STAYING AS FAR AWAY FROM THAT PSYCH DR AS I CAN, I REFUSE TO SEE ANYONE IN THE SAME BUILDING WITH HIM. (WHICH CAUSED MY FIRST TIFF WITH MY PCP LAST NIGHT). HE IS REALLY WORRIED ABOUT ME AND THINKS I NEED TO GET OVER TO THEIR LITTLE STRESS HOSPITAL. OH, I CAN SEE A DIFFERENT PSYCH DR. SO IT WILL BE OK. NOT!! I HAVE AN APPOINTMENT SET UP WITH A COUNSELOR AND A NEW PSYCH DR. BUT IT ISN'T UNTIL NEXT THURSDAY. I'M REALLY OK. JUST DOWN AND FRUSTRATED AND DONT WANT TO BE AROUND PEOPLE RIGHT NOW. I JUST WANT TO STAY HOME WHERE ITS QUIET. I DONT WANT TO GO TO WORK CAUSE OF ALL THE DRAMA AND CHAOS GOING ON THERE. IT MAKES ME FEEL LIKE PUNCHING SOMEONE IN THE HEAD. SO, THE BEST PLACE FOR ME IS HOME. THAT IS THE EXTENT OF WHAT'S GOING ON IN MY HEAD RIGHT NOW. I KNOW MY PCP IS WORRIED BECAUSE I AM USUALLY THE OPPOSITE OF THE ME I JUST DESCRIBED. BUT ITS NOT LIKE I'M SUICIDAL OR HOMICIDAL! SO THERE YOU HAVE IT. THE MENTAL PICTURE. AND OF COURSE I'M STRESSED ABOUT THE PAIN, MY JOB, THE DX, ABOUT MY BODY AND BRAIN PLAYING THEIR LITTLE GAMES - BUT THAT IS A NORMAL REACTION I WOULD THINK.
I SET UP AN MS TRACKER AND JOURNAL ON HERE LAST NIGHT AND I THINK THEY WILL BE A BIG HELP.
MY MEDS? OH YES, THEY DO BRING WITH THEM THEIR OWN SET OF PROBLEMS. I WON'T GO INTO EACH ONE BUT I WILL LIST THE ONES I TAKE.
EFFEXOR, TEGRETOL, SYNTHROID, ATIVAN, XANAX, PERCOCET, SOMA, BLOOD PRESSURE MED, ZANTAC, MIRILAX, AMBIEN, SYBICORT, SINGULAIR, TOPAMAX, CLARATIN
SOUND LIKE ANYTHING YOU ALL TAKE?
SO, I HAD MY MRI DONE TODAY "TO RULE OUT MS" WITH AND W/O CONTRAST. I TRIED TO PRY SOME HINT OUT OF THE RADIOLIGIST BUT ALL HE WOULD SAY IS THAT THEY GOT SOME GREAT PICTURES THAT WOULD DEFINITELY HELP MY DOCTOR WITH A DIAGNOSIS.
QUIX- CAN'T WAIT TO READ THE LINKS YOU POSTED FOR ME. I'M SURE THEY WILL GIVE ME MORE AMMO TO PUT IN MY BELT IN CASE I NEED IT. I'LL READ THEM AS SOON AS I POST THIS.
MARY- U CRACKED ME UP ABOUT THE WEINIE ROAST!
I WAS OKAY WITH THE FIBRO DX. AT LEAST IT MADE SENSE FOR A WHILE. ITS WHEN I HAVE ALL THE OTHER WEIRD THINGS GOING ON THAT IT BOTHERS ME AND MAKES ME THINK THAT THERE MIGHT ME SOMETHING ELSE GOING ON. I HAD PRETTY MUCH FORGOTTEN ABOUT THE 2005 MRI UNTIL I STARTED HAVING REAL TROUBLE WITH MY VISION. SO NOW I JUST WANT THAT CHECKED OUT AGAIN TO BE SURE.
I UNDERSTAND WHAT U ARE SAYING ABOUT LOOKING AT THE RESULTS AS A WHOLE. AND SOME OF WHAT I AM GOING THRU COULD BE MED RELATED. I PROMISE I WILL NOT STOP ANY MEDS WITH MY DOC SAYING SO.
I REALLY APPRECIATE EVERYONE SHARING THEIR EXPERIENCE AND KNOWLEDGE WITH ME. I HAVE SOME CONFIDENCE IN MYSELF NOW THAT I CAN BE AN ADVOCATE FOR MYSELF, WITH U ALL AND MY PCP BESIDE ME, IT'S GONNA BE GREAT!
I'LL LET U KNOW AS SOON AS I GET THE RESULTS OF THE MRI.
JJ- U DID SUM IT UP CORRECTLY. NOT ONLY AM I STAYING AS FAR AWAY FROM THAT PSYCH DR AS I CAN, I REFUSE TO SEE ANYONE IN THE SAME BUILDING WITH HIM. (WHICH CAUSED MY FIRST TIFF WITH MY PCP LAST NIGHT). HE IS REALLY WORRIED ABOUT ME AND THINKS I NEED TO GET OVER TO THEIR LITTLE STRESS HOSPITAL. OH, I CAN SEE A DIFFERENT PSYCH DR. SO IT WILL BE OK. NOT!! I HAVE AN APPOINTMENT SET UP WITH A COUNSELOR AND A NEW PSYCH DR. BUT IT ISN'T UNTIL NEXT THURSDAY. I'M REALLY OK. JUST DOWN AND FRUSTRATED AND DONT WANT TO BE AROUND PEOPLE RIGHT NOW. I JUST WANT TO STAY HOME WHERE ITS QUIET. I DONT WANT TO GO TO WORK CAUSE OF ALL THE DRAMA AND CHAOS GOING ON THERE. IT MAKES ME FEEL LIKE PUNCHING SOMEONE IN THE HEAD. SO, THE BEST PLACE FOR ME IS HOME. THAT IS THE EXTENT OF WHAT'S GOING ON IN MY HEAD RIGHT NOW. I KNOW MY PCP IS WORRIED BECAUSE I AM USUALLY THE OPPOSITE OF THE ME I JUST DESCRIBED. BUT ITS NOT LIKE I'M SUICIDAL OR HOMICIDAL! SO THERE YOU HAVE IT. THE MENTAL PICTURE. AND OF COURSE I'M STRESSED ABOUT THE PAIN, MY JOB, THE DX, ABOUT MY BODY AND BRAIN PLAYING THEIR LITTLE GAMES - BUT THAT IS A NORMAL REACTION I WOULD THINK.
I SET UP AN MS TRACKER AND JOURNAL ON HERE LAST NIGHT AND I THINK THEY WILL BE A BIG HELP.
MY MEDS? OH YES, THEY DO BRING WITH THEM THEIR OWN SET OF PROBLEMS. I WON'T GO INTO EACH ONE BUT I WILL LIST THE ONES I TAKE.
EFFEXOR, TEGRETOL, SYNTHROID, ATIVAN, XANAX, PERCOCET, SOMA, BLOOD PRESSURE MED, ZANTAC, MIRILAX, AMBIEN, SYBICORT, SINGULAIR, TOPAMAX, CLARATIN
SOUND LIKE ANYTHING YOU ALL TAKE?
SO, I HAD MY MRI DONE TODAY "TO RULE OUT MS" WITH AND W/O CONTRAST. I TRIED TO PRY SOME HINT OUT OF THE RADIOLIGIST BUT ALL HE WOULD SAY IS THAT THEY GOT SOME GREAT PICTURES THAT WOULD DEFINITELY HELP MY DOCTOR WITH A DIAGNOSIS.
QUIX- CAN'T WAIT TO READ THE LINKS YOU POSTED FOR ME. I'M SURE THEY WILL GIVE ME MORE AMMO TO PUT IN MY BELT IN CASE I NEED IT. I'LL READ THEM AS SOON AS I POST THIS.
MARY- U CRACKED ME UP ABOUT THE WEINIE ROAST!
I WAS OKAY WITH THE FIBRO DX. AT LEAST IT MADE SENSE FOR A WHILE. ITS WHEN I HAVE ALL THE OTHER WEIRD THINGS GOING ON THAT IT BOTHERS ME AND MAKES ME THINK THAT THERE MIGHT ME SOMETHING ELSE GOING ON. I HAD PRETTY MUCH FORGOTTEN ABOUT THE 2005 MRI UNTIL I STARTED HAVING REAL TROUBLE WITH MY VISION. SO NOW I JUST WANT THAT CHECKED OUT AGAIN TO BE SURE.
I UNDERSTAND WHAT U ARE SAYING ABOUT LOOKING AT THE RESULTS AS A WHOLE. AND SOME OF WHAT I AM GOING THRU COULD BE MED RELATED. I PROMISE I WILL NOT STOP ANY MEDS WITH MY DOC SAYING SO.
I REALLY APPRECIATE EVERYONE SHARING THEIR EXPERIENCE AND KNOWLEDGE WITH ME. I HAVE SOME CONFIDENCE IN MYSELF NOW THAT I CAN BE AN ADVOCATE FOR MYSELF, WITH U ALL AND MY PCP BESIDE ME, IT'S GONNA BE GREAT!
I'LL LET U KNOW AS SOON AS I GET THE RESULTS OF THE MRI.
Fortunately a bunch of people have jumped in here and said a lot of what I was going to come back to. Here's just a few more points.
MS diagnosis is not based on MRI evidence alone and a positive LP is not required. These tests, along with others that suggest MS or exclude other diseases and a complete clinical neurological exam all need to be considered together.
So they are afraid of labeling you with a diagnosis that will make you uninsurable? How considerate! They prefer then to refuse a diagnosis and potential treatment that could have delayed progression of symptoms. So I suppose they suggest this when they suspect something like cancer as well? And yet, there is no apparent hesitation to use diagnoses that have a similar potential to cause prejudice against you in the community and workplace. And then, what? They don't even ask why their treatments haven't helped in five years? These docs are invited to this Friday's weinie roast and we might just have to move it up to tonight! (Oh sorry, can't do that. Today is Wednesday and it doesn't seem any of these doc ever grew the proper equipment for a hump day roasting.)
I think JJ makes a good point. Some docs think the chicken came first. Others think it was the egg. None will admit they base their opinion on evidence thinner than air. Your comments tell me you know you have pain and anxiety and depression BUT you don't think they are caused by what the doctors say they are. You have been more than patient and if you hadn't started questioning these 'professionals' now I fear you would have soon just given up on trying to help yourself.
Look at this quote from your original post: "Right now I am having symptoms of blurred vision off and on, strange sensations on my skin, feel like someone is hugging me around my chest all the time and feel short of breath, foot feels like i have a toe in an electric socket if something touches it, feel like a hair is touching my leg in one spot but there is nothing there, and for the past 2 days, feel like there are ants or something crawling on me or under my skin. I am having a lot of anxiety, depression, and irritability. Pretty sure I'm going crazy....."
Each specialist you see tends to look at that list to see how it fits into their own unique mini-medical world. Some might see a bad drug reaction or withdrawal symptoms. Another psychiatric symptoms with a psychological cause. Another a neuorological disease process. Another sees endocrine disease symptoms. Yet another finds evidence of a sleep disorder, or muscle disease, or vitamin deficiency, etc, etc.
The point is that complete testing must be done when there are multiple potentials and the docs need to look at the results as a whole. Did you ever hear the saying, The sum is greater than the total of it's parts? In many cases the evidence as a whole is more compelling than any single test or symptom. If the tests can't pin down the diagnosis, some treatment trials may help to confirm suspicions. What doesn't work needs to be abandoned UNDER SUPERVISION.
No one here will suggest you stop your present medications or treatment on your own. It's important to address your ongoing depression but maybe a big drug change isn't the best answer right now. I think you are right in looking for alternatives first. I even think that taking charge of your own care may give you some energy to more forward, although I will also warn you that diagnostic journeys like this are also filled with frustration and anger.
You can trust yourself to know when something that's happening to you isn't right. Finding answers for yourself can be satisfying and enpowering. I personally think that if you like and trust your primary care doctor, it is best to have him actively take part in overseeing your case so nothing gets missed. And don't forget that what you are doing now is VERY important. Educate yourself and be your own advocate in healthcare always!
BTW, pain and anxiety and depression are all common in people diagnosed with MS. These systems can result from the disease process itself and they usually manifest somewhere along the line after diagnosis in response to living with the disease. If you look through the topics here that becomes quite clear. Please stick around, ask questions, read and keep us up to date on your journey.
Mary
(who doesn't happen to think you are clueless!)
MS diagnosis is not based on MRI evidence alone and a positive LP is not required. These tests, along with others that suggest MS or exclude other diseases and a complete clinical neurological exam all need to be considered together.
So they are afraid of labeling you with a diagnosis that will make you uninsurable? How considerate! They prefer then to refuse a diagnosis and potential treatment that could have delayed progression of symptoms. So I suppose they suggest this when they suspect something like cancer as well? And yet, there is no apparent hesitation to use diagnoses that have a similar potential to cause prejudice against you in the community and workplace. And then, what? They don't even ask why their treatments haven't helped in five years? These docs are invited to this Friday's weinie roast and we might just have to move it up to tonight! (Oh sorry, can't do that. Today is Wednesday and it doesn't seem any of these doc ever grew the proper equipment for a hump day roasting.)
I think JJ makes a good point. Some docs think the chicken came first. Others think it was the egg. None will admit they base their opinion on evidence thinner than air. Your comments tell me you know you have pain and anxiety and depression BUT you don't think they are caused by what the doctors say they are. You have been more than patient and if you hadn't started questioning these 'professionals' now I fear you would have soon just given up on trying to help yourself.
Look at this quote from your original post: "Right now I am having symptoms of blurred vision off and on, strange sensations on my skin, feel like someone is hugging me around my chest all the time and feel short of breath, foot feels like i have a toe in an electric socket if something touches it, feel like a hair is touching my leg in one spot but there is nothing there, and for the past 2 days, feel like there are ants or something crawling on me or under my skin. I am having a lot of anxiety, depression, and irritability. Pretty sure I'm going crazy....."
Each specialist you see tends to look at that list to see how it fits into their own unique mini-medical world. Some might see a bad drug reaction or withdrawal symptoms. Another psychiatric symptoms with a psychological cause. Another a neuorological disease process. Another sees endocrine disease symptoms. Yet another finds evidence of a sleep disorder, or muscle disease, or vitamin deficiency, etc, etc.
The point is that complete testing must be done when there are multiple potentials and the docs need to look at the results as a whole. Did you ever hear the saying, The sum is greater than the total of it's parts? In many cases the evidence as a whole is more compelling than any single test or symptom. If the tests can't pin down the diagnosis, some treatment trials may help to confirm suspicions. What doesn't work needs to be abandoned UNDER SUPERVISION.
No one here will suggest you stop your present medications or treatment on your own. It's important to address your ongoing depression but maybe a big drug change isn't the best answer right now. I think you are right in looking for alternatives first. I even think that taking charge of your own care may give you some energy to more forward, although I will also warn you that diagnostic journeys like this are also filled with frustration and anger.
You can trust yourself to know when something that's happening to you isn't right. Finding answers for yourself can be satisfying and enpowering. I personally think that if you like and trust your primary care doctor, it is best to have him actively take part in overseeing your case so nothing gets missed. And don't forget that what you are doing now is VERY important. Educate yourself and be your own advocate in healthcare always!
BTW, pain and anxiety and depression are all common in people diagnosed with MS. These systems can result from the disease process itself and they usually manifest somewhere along the line after diagnosis in response to living with the disease. If you look through the topics here that becomes quite clear. Please stick around, ask questions, read and keep us up to date on your journey.
Mary
(who doesn't happen to think you are clueless!)
Smoking is sooo overcalled and there is no evidence that lesions caused by smoking IF you can tell whcih ones they are - are ever associated with neurological symptoms.
I wrote quite a bit about smoking and lesions and how they typically are a red herring on this thread:
http://www.medhelp.org/posts/Multiple-Sclerosis/brain-lesions-not-near-ventricles-/show/1318175?personal_page_id=302#post_6031425
Yes, you should demand to have MS explored since you have that report from 2005. A doctor has to use ALL the evidence available. they can't pick and choose - explaining away one thing with one diagnosis and another thing with another diagnosis. The doctor that does that is not very well trained intellectually.
You need to read the thread "Lies My Neuro Told Me."
http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879
Quix
Quix
I wrote quite a bit about smoking and lesions and how they typically are a red herring on this thread:
http://www.medhelp.org/posts/Multiple-Sclerosis/brain-lesions-not-near-ventricles-/show/1318175?personal_page_id=302#post_6031425
Yes, you should demand to have MS explored since you have that report from 2005. A doctor has to use ALL the evidence available. they can't pick and choose - explaining away one thing with one diagnosis and another thing with another diagnosis. The doctor that does that is not very well trained intellectually.
You need to read the thread "Lies My Neuro Told Me."
http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879
Quix
Quix
COMMUNITY LEADER
Hey Dee,
I am a little confused about what is happening to you, first you've been dx with fibro by 2 dr's, which is i remember correctly involves a lot of pain, unresolved pain leads to depression/stress and anxiety but a psych decided you have somato pain disorder. So the psych believes its the other way around, you have a anxiety/depression disorder that manifests its self as pain. The dx you have been given, completely contradict each other, one is logically incorrect, i'm leaning towards the psych being a twit.
To top it off, you have an MRI report that basically says demylation (MS) is a possibility and needs further investigation but the dr's at that time, couldn't find their gonads and felt it was in your best interest to not dx you with MS, because of the insurance nightmare (WTF!) AND AND in that time you have added to your MS type sx.
Did I basically sum that up right? Holy Cow girl, dont go back to the psych who dx somato pain disorder, run, hobble, hide but dont go there!!! Take a deep breath and start from scratch. Write down all the little and big things you are dealing with, leave nothing out because you dont know what is relevant and what isn't. Check out the time line information in our health pages, it will help you work out how to start.
With your history, anxiety and depression do not of themselves exclude you from having a neurlogical condition like MS, you need to find the cause and at this stage nothing is clear! BTW some of the medications rx for psychological conditions can cause no end of problems, do you know what adverse reactions are connected to your medications?
I hope your new MRI is ordered using MS protocol and they compare your 2005 MRI to see if there is anything new going on, my fingers are crossed that the answers come to you soon!!
Cheers.....JJ
PS Welcome to limbo land :-)
I am a little confused about what is happening to you, first you've been dx with fibro by 2 dr's, which is i remember correctly involves a lot of pain, unresolved pain leads to depression/stress and anxiety but a psych decided you have somato pain disorder. So the psych believes its the other way around, you have a anxiety/depression disorder that manifests its self as pain. The dx you have been given, completely contradict each other, one is logically incorrect, i'm leaning towards the psych being a twit.
To top it off, you have an MRI report that basically says demylation (MS) is a possibility and needs further investigation but the dr's at that time, couldn't find their gonads and felt it was in your best interest to not dx you with MS, because of the insurance nightmare (WTF!) AND AND in that time you have added to your MS type sx.
Did I basically sum that up right? Holy Cow girl, dont go back to the psych who dx somato pain disorder, run, hobble, hide but dont go there!!! Take a deep breath and start from scratch. Write down all the little and big things you are dealing with, leave nothing out because you dont know what is relevant and what isn't. Check out the time line information in our health pages, it will help you work out how to start.
With your history, anxiety and depression do not of themselves exclude you from having a neurlogical condition like MS, you need to find the cause and at this stage nothing is clear! BTW some of the medications rx for psychological conditions can cause no end of problems, do you know what adverse reactions are connected to your medications?
I hope your new MRI is ordered using MS protocol and they compare your 2005 MRI to see if there is anything new going on, my fingers are crossed that the answers come to you soon!!
Cheers.....JJ
PS Welcome to limbo land :-)
Well, the MRI is just of my brain tomorrow. I will ask about getting my spine checked as well. That MS hug sounds just like what I feel.
As far as the stress unit, it is in a different building than the hospital and I would not be able to have any medical tests done while I was there. The psych dr. that put the somatoform label on me is the director of the place and I told my pcp that I dont like the guy and wont see him. My pcp is worried because my Effexor doesn't seem to be doing its job anymore and it needs to be changed. He wants me in the stress unit so they can watch me while they change that to something else. They could do that in the regular hospital but they have no justification for admitting me medically at the moment.
The somatoform dx makes me very angry too! My pcp doesn't agree with it and treats me for fibromyalgia that was the dx my previous pcp gave. Unfortunately, that entails pain management, sleep meds, and a few psych meds. For the past few weeks, my body and brain have gone wacko and we changed the pain med and added anxiety med. I'm still a mess.
Maybe the MRI will show something that they can put me in the regular hospital for. I am not going to the stress unit.
I have heard alot about U of M Columbia but I don't know anything about how I would get in there for help. I live on the outskirts of St. Louis so if I couldn't be inpatient there, I don't know how I'd do it. I have heard a lot of great things about the place!
Dee
As far as the stress unit, it is in a different building than the hospital and I would not be able to have any medical tests done while I was there. The psych dr. that put the somatoform label on me is the director of the place and I told my pcp that I dont like the guy and wont see him. My pcp is worried because my Effexor doesn't seem to be doing its job anymore and it needs to be changed. He wants me in the stress unit so they can watch me while they change that to something else. They could do that in the regular hospital but they have no justification for admitting me medically at the moment.
The somatoform dx makes me very angry too! My pcp doesn't agree with it and treats me for fibromyalgia that was the dx my previous pcp gave. Unfortunately, that entails pain management, sleep meds, and a few psych meds. For the past few weeks, my body and brain have gone wacko and we changed the pain med and added anxiety med. I'm still a mess.
Maybe the MRI will show something that they can put me in the regular hospital for. I am not going to the stress unit.
I have heard alot about U of M Columbia but I don't know anything about how I would get in there for help. I live on the outskirts of St. Louis so if I couldn't be inpatient there, I don't know how I'd do it. I have heard a lot of great things about the place!
Dee
Hi,
so when you say stress unit are your talking about the behavioral/psychiatric unit at the hospital? If you need to go there for your own safety and health then it's definately the right thing to do. Do you think that you could have alot of tests done if you are inpatient? That would make your stay at the hospital very useful.
If he is wanting to place you there because he doesn't believe you then I would refuse to be admitted.
As far as the Somataform Disorder----that's ridiculous, bunch of cr__. It's extremely rare, it can be diagnosed only when EVERY physical illness has been tested for. It is diagnosed in young women between 20-34. It's always women----!!! You are in your forties. They are blowing you off. You need to blow them off!!
I'm sorry this just makes my blood boil.
Is there any way you could get in to U of M at Columbia? It's a great hospital. I think you would have a better chance of getting the help you need.
I really recommend that you get 'new eyes' for your issues. Whether it is MS or something else, you are important and should be treated with respect.
Red
so when you say stress unit are your talking about the behavioral/psychiatric unit at the hospital? If you need to go there for your own safety and health then it's definately the right thing to do. Do you think that you could have alot of tests done if you are inpatient? That would make your stay at the hospital very useful.
If he is wanting to place you there because he doesn't believe you then I would refuse to be admitted.
As far as the Somataform Disorder----that's ridiculous, bunch of cr__. It's extremely rare, it can be diagnosed only when EVERY physical illness has been tested for. It is diagnosed in young women between 20-34. It's always women----!!! You are in your forties. They are blowing you off. You need to blow them off!!
I'm sorry this just makes my blood boil.
Is there any way you could get in to U of M at Columbia? It's a great hospital. I think you would have a better chance of getting the help you need.
I really recommend that you get 'new eyes' for your issues. Whether it is MS or something else, you are important and should be treated with respect.
Red
Speaking personally, you need a 3T MRI of your spine. It sounds like you have some spine problems, perhaps a lesion, that's causing your symptoms - especially the electrical toe and the chest hug. There's a symptom known as the MS hug that causes a banding sensation around the torso. Sometimes it feels like a chest cramp, or like a side stitch.
I just got home from my appt and my primary has ordered another MRI. I will have that done at noon tomorrow.
As understanding as he is, he also wants me to check in to the stress unit because he feels that I am too depressed and need med changes. I do not want to be holed up in a hospital. I am doing fine holed up in my house. I am stressed and depressed because my body hurts and my brain and body are playing tricks on me. I just dont want to go to the stress unit. In my docs defense, anytime I have a med change, there is a good chance that I will have some undesired effect from it. That has happened very frequently. Just venting there I guess. I do apologize.
Thank you for your response and I am looking forward to reading what more you want to post on this.
As understanding as he is, he also wants me to check in to the stress unit because he feels that I am too depressed and need med changes. I do not want to be holed up in a hospital. I am doing fine holed up in my house. I am stressed and depressed because my body hurts and my brain and body are playing tricks on me. I just dont want to go to the stress unit. In my docs defense, anytime I have a med change, there is a good chance that I will have some undesired effect from it. That has happened very frequently. Just venting there I guess. I do apologize.
Thank you for your response and I am looking forward to reading what more you want to post on this.
I'm afraid you are already at your appointment today. Yes, mention what is happening to your primary. Your symptoms may or may not be from MS but if they have increased over the past five years even while you are receiving counseling, you deserve to be re-evaluated.
I'll write more but want to send this is case there is a chance with the time zone difference that you may read it before your appointment. IMO somatoform is much rarer than MS or any of the other neurologic potentials that cause similar symptoms.
Mary
I'll write more but want to send this is case there is a chance with the time zone difference that you may read it before your appointment. IMO somatoform is much rarer than MS or any of the other neurologic potentials that cause similar symptoms.
Mary
Thanx for responding! I will definitely ask for ms specific mris as I have been being treated for fibromyalgia all this time and I'm just getting worse. I have been on the net for 2 days trying to find something that compares symtoms of ms to fibro but have had no luck so far.
Has anyone else had a dx of fibro or a doc that didn't want to "write it down" when your mri suggested ms? at this point, i dont care what its called, as long as i can get the right treatment for it before it gets worse.
Has anyone else had a dx of fibro or a doc that didn't want to "write it down" when your mri suggested ms? at this point, i dont care what its called, as long as i can get the right treatment for it before it gets worse.
I do know that from other conversations on here that smoking can cause lesions but I am pretty sure that the lesions they cause don't cause any physical problems. I did not know about smoking causing lesions until I read about it on here.
Migraines also cause lesions.
I would show your PCP the report and if you are having syptoms then maybe you need to return to a neurologist so they can do some more testing, if that MRI is from 5 years ago then it is definatley time to do another one.
Good luck and keep us informed.
Paula
Migraines also cause lesions.
I would show your PCP the report and if you are having syptoms then maybe you need to return to a neurologist so they can do some more testing, if that MRI is from 5 years ago then it is definatley time to do another one.
Good luck and keep us informed.
Paula
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