Aa
How many of you have been told this? Thanks Lulu
Hello Lulu, it has been a while since we spoke I am sorry for that. I have been going through so very much over this past year or so. I just wanted to ask your advice on something, I went to cleveland finally on the 15th of this month. I was shocked when the neurologist there told me, without my medical records only with one MRI that he thinks I am not dealing with MS but with clinical depression. I just don't know what to think, of course I don't want to have MS but I have had other neurologists at MSU ( Michigan State University) say that they just could not rule it out and that we need to pursue tests and continue to keep track of the things that are happening to me both physically and mentally. Is it possible that depression has caused my weakness, numbness, vertigo, double vision, blurred vision, limp, flashing of small lights in my eyes.. there is more. I just don't know what to do Lulu.. has anyone on here been told something like this before? I know you are not a doctor dear and don't expect a direct answer about my symptoms I just need to know if other people on here have ever been told what I have. Please help Lulu as best you can. Thank you so much for your time. Teresa
Sent by Lulu54 47 minutes ago
Teresa, there are a number of people here who have b een told that their illness only exists in their head and not the lesion kind. We hear this so often that we recommend that people go ahead and have an evaluation done with a psychiatrist so this can be taken off the table. It's all too easy for the doctors to pat you on the head, particularly if you are a woman, and be told that it's stress/depression/etc. when they can't see an easy answer. It can be possible for depression to cause a lot of symptoms, but what do you think? If you believe there is something wrong, don't take this easy answer - I would stick with those MSU doc s and keep track of your symptoms.
In the meantime you might want to post this on the forum and read about others' experiences with this. It happens more often than you might think.
hugs, L
Sent by Lulu54 47 minutes ago
Teresa, there are a number of people here who have b een told that their illness only exists in their head and not the lesion kind. We hear this so often that we recommend that people go ahead and have an evaluation done with a psychiatrist so this can be taken off the table. It's all too easy for the doctors to pat you on the head, particularly if you are a woman, and be told that it's stress/depression/etc. when they can't see an easy answer. It can be possible for depression to cause a lot of symptoms, but what do you think? If you believe there is something wrong, don't take this easy answer - I would stick with those MSU doc s and keep track of your symptoms.
In the meantime you might want to post this on the forum and read about others' experiences with this. It happens more often than you might think.
hugs, L
There was a social experiment done a while back that might comfort you: A group of psychiatrists and psychologists arranged to have themselves commited to a mental hospital.
It was the PATIENTS who ratted them out! The staff psychiatrists, psychologists, nurses, etc. all presumed that they must be mentally ill because they were in the hospital. But the PATIENTS recognized immediately that these guys were "normal."
TRUE STORY. So don't ashamed (even though you have every right!) because apparently, people with severe and lifelong mental illness are better at recognizing "normal" than most so-called professionals.
Take heart. Believe in yourself.
It was the PATIENTS who ratted them out! The staff psychiatrists, psychologists, nurses, etc. all presumed that they must be mentally ill because they were in the hospital. But the PATIENTS recognized immediately that these guys were "normal."
TRUE STORY. So don't ashamed (even though you have every right!) because apparently, people with severe and lifelong mental illness are better at recognizing "normal" than most so-called professionals.
Take heart. Believe in yourself.
I can't begin to imagine how difficult that therapy room/situation must be for you. It sure would be tough for me.
Hang in there and hopefully someone will listen to your words of the story a bit closer and realize this is not the type of health you need.
hugs L
Hang in there and hopefully someone will listen to your words of the story a bit closer and realize this is not the type of health you need.
hugs L
I must say that I am shocked at the amount of responses I have gotten on my question to Lulu. I had no idea that this was so common and that so many of you have been where I am. I feel like you are all my close family and are the only ones who truly understand the hell I am living. I am listening to all of you and will keep you up to date on what happens. So far I have been asked to attend a class for people with severe mental disorders for the next ten weeks while waiting to see the new psychiatrist. Yep every Tuesday morning from 9 am to 11 30 am I am sitting in a 12 by 12 room with six other people, two of them are people who have overcome their severe mental illnesses. I can only say one thing at this point, I thought I had done it all. I cannot tell you how embarrassed and belittled I feel to attend these classes. Please do not misunderstand me at all, I feel absolutely horrible for these poor people who really do need this class. They are or have been severely mentally ill for most of their lives and I sincerely feel for them and praise their efforts to push on and make their lives better. It is difficult for me to attend these classes but I have promised my social worker that I will give it my all. You know what hurts me the most though? That these people will not believe me and are trying to make me nuts!! My mother told me today not to give up and to keep rite on pushing them all back. She knows how I have been affected more than anyone does and I will not give up!! There has to be someone out there that is going to hear me one day! Again thank you all for sharing your thoughts with me. I cannot tell you how much it has helped me to sometimes just get through a day. : ) Thank you again Lulu for asking me to repost the message I sent to you I felt so alone and so down. Thank you so much!! I will be back soon..
Hey, thanks for your post. For some reason, where I live, docs aren't granting interviews. So appointment #1 is the interview. I'm lucky to have a great PCP who actually has some experience with MS, and thank God, because the neurobot who refered me to the MS specialist called him up and got him to give her treatment advice for me. They agreed my symptoms were not severe enough to treat.
The refering Neurobot hadn't clapped eyes on me in months. The other guy had never even seen me. Soon as I found this out, had to call the clinic and change docs. If I hadn't gotten so much relief from just a short course of oral steroids, I'd be giving up on Neurobots and docs in general. But when you've been feeling like cr&p-in-a-wrap for years, and something finally makes you feel better...well, how do you just "let it go"?
Exhausting.
The refering Neurobot hadn't clapped eyes on me in months. The other guy had never even seen me. Soon as I found this out, had to call the clinic and change docs. If I hadn't gotten so much relief from just a short course of oral steroids, I'd be giving up on Neurobots and docs in general. But when you've been feeling like cr&p-in-a-wrap for years, and something finally makes you feel better...well, how do you just "let it go"?
Exhausting.
I know an older woman who was actually committed to an institution. She was in and out before someone finally figured out she had MS and that all of her complaints of things coming and going were literally symptoms of a disease with a real name versus symptoms of psychosis.
Do keep trying.
Did you know you can request an appointment to interview a doctor? I interview my doctors first so I can rule them out if they can't listen. I tell them all of the hard stuff up front, get their reaction and ask them point blank if they will have any problems dealing with me or any of my medical/life issues. Its gone a long way to having great trust with my pcp... And she rocks!
Good luck.
Do keep trying.
Did you know you can request an appointment to interview a doctor? I interview my doctors first so I can rule them out if they can't listen. I tell them all of the hard stuff up front, get their reaction and ask them point blank if they will have any problems dealing with me or any of my medical/life issues. Its gone a long way to having great trust with my pcp... And she rocks!
Good luck.
Even my psychiatrist's report, the results of my neuropsychiatric exams, my therapist's report could not spare me the psychosomatic brush-off. Even definitive clinical evidence of massive CNS inflammation (17 o bands) could not forestall the dreaded dismissal most of us women face: Stress, psychosomatic, etc.
I find the best approach is to ask a simple question: "Can you show me where in the diagnostic manual of psychiatry this Dx can be made based on what I've told you?" It is especially fun if you have a copy of the DSM with you and point to the part where it says that "Conversion Disorder" is a Dx of "exclusion", meaning it can't be made in the presence of ANY biological finding that could account for even part of the symptom.
The way my shrink explained it to me, Conversion can't even be Dx'd in cases like ours if there is a known history of concussion and/or brain injury. I had carbon monoxide poisoning. Because CO poisoning causes delayed degenerative changes in some people, it rules out automatically a Dx of Conversion or Depression because there is a Hx of organic damage.
Likewise, a Dx of Depression can't be made without a proper depression inventory and an interview with a mental health professional. Most of us who end up depressed, I'm willing to bet, are depressed by being constantly invalidated by doctors practicing outside their fields of expertise and collecting insurance money for doing it.
So I say, let's write to their malpractice insurers and express our concern that Dr. X may be practicing outside their certification. Maybe then something will change. MS takes 7-10 years to Dx because it takes that long to get a bloody neurologist to stop playing shrink and start practicing neurology.
This is why, if I had it to do over, I would go first to the opthalmologist, then to the ENT for vestibular testing, to a PhD level physical therapist or rehab medicine doc (because they do better neurological exams), and to a psychiatrist and therapist for as long and consistantly as I could afford it. I would then be able to say, "Well, Dr. Neurobot, I really thought it was depression at first, too. In fact, that was MY first thought. But here's the report from (then I'd lay the reports out one by one on their desk, along with the business card and a HIPAA release for each) and each of these doctors would like to talk to you about their findings."
The other thing I'd do is set up a permanent webcam in high traffic parts of my house, places where I have difficulty, like the kitchen, etc. Or better yet, have someone I trust "Nanny Cam" my house and not tell me where the cameras are.
It's too much like going to war.
Now, I have a simple speech whenever I interview a new neuro. I say, "Dr. Y, I really want us to have a working collaboration, and I know you have expertise. But you need to know that I already have a mental health team hired, and I am looking solely for a neurologist. My mental health team would be happy to speak with you. But I want it to be clear that I am not soliciting and will not accept your assessment of my mental health, nor will I permit any such assessment to remain unchallenged in my file. This can only muddy the waters of my treatment plan not only with you, but with my mental health care providers."
Hire a shrink first? Go into therapy first? Sorry to say, but once you enter the round robin insanity of trying to find a good neurologist, trust me, you WILL need therapy.
I find the best approach is to ask a simple question: "Can you show me where in the diagnostic manual of psychiatry this Dx can be made based on what I've told you?" It is especially fun if you have a copy of the DSM with you and point to the part where it says that "Conversion Disorder" is a Dx of "exclusion", meaning it can't be made in the presence of ANY biological finding that could account for even part of the symptom.
The way my shrink explained it to me, Conversion can't even be Dx'd in cases like ours if there is a known history of concussion and/or brain injury. I had carbon monoxide poisoning. Because CO poisoning causes delayed degenerative changes in some people, it rules out automatically a Dx of Conversion or Depression because there is a Hx of organic damage.
Likewise, a Dx of Depression can't be made without a proper depression inventory and an interview with a mental health professional. Most of us who end up depressed, I'm willing to bet, are depressed by being constantly invalidated by doctors practicing outside their fields of expertise and collecting insurance money for doing it.
So I say, let's write to their malpractice insurers and express our concern that Dr. X may be practicing outside their certification. Maybe then something will change. MS takes 7-10 years to Dx because it takes that long to get a bloody neurologist to stop playing shrink and start practicing neurology.
This is why, if I had it to do over, I would go first to the opthalmologist, then to the ENT for vestibular testing, to a PhD level physical therapist or rehab medicine doc (because they do better neurological exams), and to a psychiatrist and therapist for as long and consistantly as I could afford it. I would then be able to say, "Well, Dr. Neurobot, I really thought it was depression at first, too. In fact, that was MY first thought. But here's the report from (then I'd lay the reports out one by one on their desk, along with the business card and a HIPAA release for each) and each of these doctors would like to talk to you about their findings."
The other thing I'd do is set up a permanent webcam in high traffic parts of my house, places where I have difficulty, like the kitchen, etc. Or better yet, have someone I trust "Nanny Cam" my house and not tell me where the cameras are.
It's too much like going to war.
Now, I have a simple speech whenever I interview a new neuro. I say, "Dr. Y, I really want us to have a working collaboration, and I know you have expertise. But you need to know that I already have a mental health team hired, and I am looking solely for a neurologist. My mental health team would be happy to speak with you. But I want it to be clear that I am not soliciting and will not accept your assessment of my mental health, nor will I permit any such assessment to remain unchallenged in my file. This can only muddy the waters of my treatment plan not only with you, but with my mental health care providers."
Hire a shrink first? Go into therapy first? Sorry to say, but once you enter the round robin insanity of trying to find a good neurologist, trust me, you WILL need therapy.
I was told by last neuro it's either ms or depression. I am actually on my way now to see him. I guess he'll tell me if I have a chronic neurological illness or depression.
Please don't think I am discounting depression as a valid chronic illness.
It is debilitating in it's own way. I am talking about being told its all in my head.
I'll let you know.
Please don't think I am discounting depression as a valid chronic illness.
It is debilitating in it's own way. I am talking about being told its all in my head.
I'll let you know.
Similar things happened to me and they happened in Cleveland! The basics of the story are on my profile. If you care to read it over just hover your cursor over my twopack ID, click and read "About twopack" in the box on the upper left corner of the page. (Just to clarify, other people have good experiences in "C" town.)
I can appreciate the diagnosis is difficult to pinpoint with certainty. I'll never understand how doctors can assume patients are stressed or fatigued or depressed to the point of causing themselves physical illness and then dismiss them so lightly. Where's the "do no harm" in that?
Hoping better things are headed your way.
Mary
I can appreciate the diagnosis is difficult to pinpoint with certainty. I'll never understand how doctors can assume patients are stressed or fatigued or depressed to the point of causing themselves physical illness and then dismiss them so lightly. Where's the "do no harm" in that?
Hoping better things are headed your way.
Mary
Thanks for the nice words, I am doing well at the moment! Back to work part time and getting married in a few weeks. Myeloma is in remission and we pray for a long remission if not a cure, but myeloma is not considered curable, just "treatable"
Hun, I cannot express in words to you how sorry I am to hear about your diagnoses.. My thoughts and prayers go out to you to say the least. That would be a very hard diagnoses to have to hear. Keep fighting and never give up!! god has a plan for each and every one of us, even when we don't understand what it is. I hope that something comes from the doctor you filed against. I wish you the very best and thank you so very much for taking time out to post for me. I am here if you ever need a shoulder.. Take care : )
That whole " it's in your head" thing is so awful!!!!!! I started with my symptoms almost 12 years ago. It has only been a few months that I have finally been diagnosed with MS. I had to go to Johns Hopkins to get my final answer. I remember at the beginning they told me depression, "hot flashes" ( like i don't know the difference), an un happy marriage ( I wasn't married at the time ... go figure ).... I really did think I was nuts. I am very glad that I hung in there and finally believed in myself to find the answer. Going for a second opinion was worth and million dollars to my sanity.
You are not crazy and if you feel it, it is real. Hang in there and keep moving forward.
Prayers and hugs to you ....
Nanci
First of all to Lulu, thank you for the fast response to my post. I was at a point that I just didn't know what to do. I cannot begin to tell all of you what this past few weeks have been like for me.. well I guess I don't have to many of you have been and are where I am today. I am so very thankful for all of your responses to my post and to you Lulu for telling me to give it a shot and re post this question to all of you. I will go to the appointment with the psychiatrist in cleveland without a doubt I am curious to see what he has to say. Depression? How could I not be? My entire life is different since all of this started and it will never be the same again. I do not want what is wrong with me to be MS I really want it to all just go away and for my life to be the way it was almost two years ago. I just want someone to hear me... just for once hear me and not tell me I am crazy. This is my body and god knows there is no way in this world that I ( or anyone ) would want to make themselves this way! Why would I want to be this way? I Also @johnniebear, my left eye started getting blood shot a week or so ago also but I assumed it was from a change in my depression medications, again.. I have no idea what is causing it and yes it is painful to move at times but its not like pink eye.. it doesn't itch or burn its just painful and bloodshot. I never would have ever thought that it could be related to anything to do with MS. Thank you to you all so very much!! It gives me much comfort to know that maybe I am not crazy after all. I will let you all know how the appointment goes in cleveland, they have my records from my current psychiatrist now so its just a waiting game. My thoughts and prayers go out to each and every one of you on here. : )
I was told I was just leading a stressful busy life and looking for something like MS to blame it on.
I was also told I may have an anxiety disorder because my hands could not stop shaking. (tremors)
Was told there was nothing wrong with me becuase the MRI was normal (when I had so many clinical symptoms and could barely walk)
after two years of this (saw so many doctors I have lost count) I was finally diagnosed with bone marrow cancer from the ER.
So I am pretty much the worse case scenaria!
Last week I filed a formal complaint against the MS Neurologist at the hospital. I
I was also told I may have an anxiety disorder because my hands could not stop shaking. (tremors)
Was told there was nothing wrong with me becuase the MRI was normal (when I had so many clinical symptoms and could barely walk)
after two years of this (saw so many doctors I have lost count) I was finally diagnosed with bone marrow cancer from the ER.
So I am pretty much the worse case scenaria!
Last week I filed a formal complaint against the MS Neurologist at the hospital. I
The very first doctor I went to other than my PCP was a Workman's comp doctor and within 5 minutes of my arrival he had me diagnosed with, you guessed it, depression... lol Over the next few years I heard it more than once but I got lots of diagnosis'...
All of the comp doctors automatically swore depression was the answer... I went to a Psychiatrist so they would finally leave that one alone and it worked... I wasn't crazy... Yes I had a little depression, OK a lot of depression, but it didn't start until after all my other symptoms did...
More than likely if you have any depression it also came on during all the doctors visits and them telling you that's what it was... I told my PCP that the comp doctors caused my depression and he said he hears that quite a lot...
Nobody knows your body better than you... You know your symptoms are real... Don't give up... The next doctor may just be the one...
I'll be praying,
Carol
All of the comp doctors automatically swore depression was the answer... I went to a Psychiatrist so they would finally leave that one alone and it worked... I wasn't crazy... Yes I had a little depression, OK a lot of depression, but it didn't start until after all my other symptoms did...
More than likely if you have any depression it also came on during all the doctors visits and them telling you that's what it was... I told my PCP that the comp doctors caused my depression and he said he hears that quite a lot...
Nobody knows your body better than you... You know your symptoms are real... Don't give up... The next doctor may just be the one...
I'll be praying,
Carol
Hello,
1st im in limbo land, not a doctor. I was told with my neuro issues (heavy, weak, fine motor tremors, random stutters, the list goes on) that it must be anxiety, MRI has multiple lessions unchanged in 3 years, brisk reflexes....told anxiety
In the past with the weakness, fatigue I did start to feel depressed with the drastic change in my life, I tried some anti-depressants, never did find one that worked for me made me real edgy.
I agree it never hurts to check it out all this craziness can drive one to be depressed but you know what you are feeling.
Good luck!
1st im in limbo land, not a doctor. I was told with my neuro issues (heavy, weak, fine motor tremors, random stutters, the list goes on) that it must be anxiety, MRI has multiple lessions unchanged in 3 years, brisk reflexes....told anxiety
In the past with the weakness, fatigue I did start to feel depressed with the drastic change in my life, I tried some anti-depressants, never did find one that worked for me made me real edgy.
I agree it never hurts to check it out all this craziness can drive one to be depressed but you know what you are feeling.
Good luck!
Sorry I hit the send key to quick.
I have copies of all my test & lab work and all of my MRI'S on cd. I take my own file with me to
each Dr visit.. So there is never an excuse to locate a file ..
I did fire that first neuro ..
Johnniebear
I have copies of all my test & lab work and all of my MRI'S on cd. I take my own file with me to
each Dr visit.. So there is never an excuse to locate a file ..
I did fire that first neuro ..
Johnniebear
My first was done for non- MS concerns,
my left eye was bloodshot 1/2 way with eye pain - left side of my was throbbing, I saw neuro I did some construction work for - no real exam she ordered a brain MRI , I returned to her a week later, they found two lesions and no Dx I was tolddon't worry about it , it's age related..
So , it may take a few visits and try not DX youself , we want answers quickly , sometimes this MS it's easy to DX., it's so different for each of us .
Sounds like maybe you needed all of your medical records that may of had test your results - these are other parts of the puzzle they need.
my left eye was bloodshot 1/2 way with eye pain - left side of my was throbbing, I saw neuro I did some construction work for - no real exam she ordered a brain MRI , I returned to her a week later, they found two lesions and no Dx I was tolddon't worry about it , it's age related..
So , it may take a few visits and try not DX youself , we want answers quickly , sometimes this MS it's easy to DX., it's so different for each of us .
Sounds like maybe you needed all of your medical records that may of had test your results - these are other parts of the puzzle they need.
I've had the experience. I went to a neuro back in March for double vision and wobbly gait/poor balance. He told me I was neurologically fine and referred me to a psychiatrist.
These symptoms returned last week, and my new primary care doc (I changed health insurance in June) immediately sent me off to an ophthalmologist, who diagnosed cranial nerve iv palsy (double vision, I discovered, gets lots of attention fast).
Though the MS diagnosis is still uncertain, I have a MRI scheduled for next week, and a followup with a neurologist. Given the chronic pain, parathesias, dysthesias, etc. I have, I'm not certain what if anything I'll be diagnosed with.
Other experiences anyone?
These symptoms returned last week, and my new primary care doc (I changed health insurance in June) immediately sent me off to an ophthalmologist, who diagnosed cranial nerve iv palsy (double vision, I discovered, gets lots of attention fast).
Though the MS diagnosis is still uncertain, I have a MRI scheduled for next week, and a followup with a neurologist. Given the chronic pain, parathesias, dysthesias, etc. I have, I'm not certain what if anything I'll be diagnosed with.
Other experiences anyone?
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
