Aa
Wish me luck!!
Seeing the only neuro here who specialises in MS tonight at 6pm. Taking my MRI CD, my timeline etc. I think I will tell her she is a second opinion and leave it up to her wether to tell her any previous findings.
She may want to do a complete restart of tests and form her own opinion.
The previous neuro said possible MS but as no change on the MRI (with no contrast) he is unsure. He thinks now it might just go away....never to return. HMMMM he said that with the first relapse which he called CIS.
Just to recap, there is more than 8 lesions...(I can count 16) in the subcortical white matter. I was 36 at first attack with these lesions. I have had 3 separate attacks over 4 years, the first one took nearly 9 months for all symptoms to resolve except one. (bending down causes jelly legs)
Symptoms included weak legs, numb soles of both feet, crawling, itching legs, vibrations in trunk,, loss of balance with nausea , blurry vision jerking awake on falling asleep, fatigue, unable to do more than shuffle ,unable to walk far or climb steps, burning left palm, eposode of numbness from the lower back to toes 5 hrs, word finding issues with bad memory, altered sensation in the perinium area.
The second 2 weeks of trigeminal neuralgia which I have read is rare in someone under 50 and MS should be considered.
The 3rd attack has taken nearly 5 months to feel almost normal again. Symptoms included left arm and hand weakness , burning left sole of foot, left palm and left eye, trigeminal neuralgia, left leg weakness, squeezing hug around ribs, numbnees in hands at night, chronic constipation and mild bladder issues, cold patches, burning and numbness right two toes, hot showers make me feel really bad.
I have been left with more symptoms that may not go. Including spasms (spasticity) in lower legs from the knee down and now the left forearm. Unable to walk more than an hr due to fatigue, sore jelly legs and spasticity.
I have hyperreflexes in knees and ankles with clonus in ankles.
Phew!!
I am so putting all my faith in this neuro to find out whats wrong with me. I have had all the mimics ruled out. My intuition tells me its MS. If it is I really need a diagnosis. It has been too long waiting in Limbo.
Please wish me luck and hope that this time I will get answers. I am really anxious as I feel this neuro is my only hope.
Mistylee
She may want to do a complete restart of tests and form her own opinion.
The previous neuro said possible MS but as no change on the MRI (with no contrast) he is unsure. He thinks now it might just go away....never to return. HMMMM he said that with the first relapse which he called CIS.
Just to recap, there is more than 8 lesions...(I can count 16) in the subcortical white matter. I was 36 at first attack with these lesions. I have had 3 separate attacks over 4 years, the first one took nearly 9 months for all symptoms to resolve except one. (bending down causes jelly legs)
Symptoms included weak legs, numb soles of both feet, crawling, itching legs, vibrations in trunk,, loss of balance with nausea , blurry vision jerking awake on falling asleep, fatigue, unable to do more than shuffle ,unable to walk far or climb steps, burning left palm, eposode of numbness from the lower back to toes 5 hrs, word finding issues with bad memory, altered sensation in the perinium area.
The second 2 weeks of trigeminal neuralgia which I have read is rare in someone under 50 and MS should be considered.
The 3rd attack has taken nearly 5 months to feel almost normal again. Symptoms included left arm and hand weakness , burning left sole of foot, left palm and left eye, trigeminal neuralgia, left leg weakness, squeezing hug around ribs, numbnees in hands at night, chronic constipation and mild bladder issues, cold patches, burning and numbness right two toes, hot showers make me feel really bad.
I have been left with more symptoms that may not go. Including spasms (spasticity) in lower legs from the knee down and now the left forearm. Unable to walk more than an hr due to fatigue, sore jelly legs and spasticity.
I have hyperreflexes in knees and ankles with clonus in ankles.
Phew!!
I am so putting all my faith in this neuro to find out whats wrong with me. I have had all the mimics ruled out. My intuition tells me its MS. If it is I really need a diagnosis. It has been too long waiting in Limbo.
Please wish me luck and hope that this time I will get answers. I am really anxious as I feel this neuro is my only hope.
Mistylee
COMMUNITY LEADER
Last night i couldn't sleep, its just so wrong and unfair to be needing medical help and having to protect your mental health not just from the yet unnamed disease but from Drs who arnt capable or cant be bothered to think globally and dx.
I'm starting to think the real meaning of somatoform or conversion disorder is dr speak for 'I dont know' or 'your dx is beyond my expertise' but i dont want to tar all neuro's with this negativity, i still think the answer will one day be as clear as this type of dr needs it to be. (X + SX = DX)
There is absolutely nothing wrong or shamfull about having a mental health problem, and that should never be how someone IS made to feel when that IS there problem. I wish one day a dr will have the cahoooooonas big enough to actually say " look i'll be honest with you, you have so many things that suggest MS but its not that simple to dx, I want to help you by treating your most problematic symptoms, hopefully you'll get any relief but i can't at this stage tell you what your problem is called but i hope to one day be able to give you that." Year i'm know, wishful thinking and its never going to happen!
When i told my family that i think the neuro is thinking its all psychological, my DH said "welcome to the family!" Everytime i fall over and someone is again picking me up off the ground, I often say 'Well that didn't happen.' If someone tells me my feet are too purple and i need to get my feet up, I often say 'No they're not, its all in YOUR imagination. Humour is whats keeping me keeping on, my attitude is mostly helping those that love me, it brings a smile to their face because they are in on the joke and it helps them not get upset too much about how wrong this all is.
So in the spirit of surviving limbo, WELCOME!
Cheers............JJ
I'm starting to think the real meaning of somatoform or conversion disorder is dr speak for 'I dont know' or 'your dx is beyond my expertise' but i dont want to tar all neuro's with this negativity, i still think the answer will one day be as clear as this type of dr needs it to be. (X + SX = DX)
There is absolutely nothing wrong or shamfull about having a mental health problem, and that should never be how someone IS made to feel when that IS there problem. I wish one day a dr will have the cahoooooonas big enough to actually say " look i'll be honest with you, you have so many things that suggest MS but its not that simple to dx, I want to help you by treating your most problematic symptoms, hopefully you'll get any relief but i can't at this stage tell you what your problem is called but i hope to one day be able to give you that." Year i'm know, wishful thinking and its never going to happen!
When i told my family that i think the neuro is thinking its all psychological, my DH said "welcome to the family!" Everytime i fall over and someone is again picking me up off the ground, I often say 'Well that didn't happen.' If someone tells me my feet are too purple and i need to get my feet up, I often say 'No they're not, its all in YOUR imagination. Humour is whats keeping me keeping on, my attitude is mostly helping those that love me, it brings a smile to their face because they are in on the joke and it helps them not get upset too much about how wrong this all is.
So in the spirit of surviving limbo, WELCOME!
Cheers............JJ
Not only is this doctor DUMB, but she is meanspirited too. And she did have the diagnosis made before you entered the room.
I want to raise the possibility that she might also be STUPID. This tossing off everything you said as "normal" like a brainful of lesions - NOT! - implies that she might have a broad deficit of knowlegde.
Of COURSE she sees it all the time. ALL lesions are age-related and even children have a goodly number of age-related lesions. After all, they have AGES, don't they??
She is WHY we need to Doctor Shop. We need a doctor who will LISTEN to us (she didn't), LOOK at us (she certainly did not have time to do much of a thorough exam) and THINK with the brains they have (maybe a total deficit in brainage is her problem).
BTW - If she didn't do a thorough history and head to toe neuro exam, then she had better not charge for a Comprehensive Consultation. That is FRAUD. You would have to check for the requirements for a Comprehensive Consultation, but it typically involves about an hour spent and indepth look at your history, symptoms, Family History, complete exam and review of all your testing prior.
The best way to get beyond the "somatiform" sidestep is obtain a psych eval. Sorry, but it can often stop this kind of non-0thinking in it's tracks. Everyone above is right. She is the head case.
Quix
I want to raise the possibility that she might also be STUPID. This tossing off everything you said as "normal" like a brainful of lesions - NOT! - implies that she might have a broad deficit of knowlegde.
Of COURSE she sees it all the time. ALL lesions are age-related and even children have a goodly number of age-related lesions. After all, they have AGES, don't they??
She is WHY we need to Doctor Shop. We need a doctor who will LISTEN to us (she didn't), LOOK at us (she certainly did not have time to do much of a thorough exam) and THINK with the brains they have (maybe a total deficit in brainage is her problem).
BTW - If she didn't do a thorough history and head to toe neuro exam, then she had better not charge for a Comprehensive Consultation. That is FRAUD. You would have to check for the requirements for a Comprehensive Consultation, but it typically involves about an hour spent and indepth look at your history, symptoms, Family History, complete exam and review of all your testing prior.
The best way to get beyond the "somatiform" sidestep is obtain a psych eval. Sorry, but it can often stop this kind of non-0thinking in it's tracks. Everyone above is right. She is the head case.
Quix
Thanks Lulu and Wobbly for your thoughts on this. I am so glad that you agree lulu that 16 lesions are not normal for a 42 year old. Especially with neuro symptoms.
I am also going to frame the report of the pshyc evaluation and give copies to all Drs and she is going to get a letter from me as well . I will be dx her with D.U.M.B disorder . That is assuming I am of sound mind!! lol. I am really determined to have this test now for my own piece of mind and so I can tell her to shove her conversion disorder where the sun don't shine!!
Phew.....deep breath.....trying to get a grip of the anger now that is rising and taking over the despondant feelings. omg am I angry now!!!
Mistylee
I am also going to frame the report of the pshyc evaluation and give copies to all Drs and she is going to get a letter from me as well . I will be dx her with D.U.M.B disorder . That is assuming I am of sound mind!! lol. I am really determined to have this test now for my own piece of mind and so I can tell her to shove her conversion disorder where the sun don't shine!!
Phew.....deep breath.....trying to get a grip of the anger now that is rising and taking over the despondant feelings. omg am I angry now!!!
Mistylee
this sounds familiar to me as well, I went through parts of this years ago when I first started seeing Dr because of what was happening to me and I knew something wasn't right.
I went to see a psych and got an assessment type of thing and I framed it, made copies to give to the Dr if necessary, but once I got it done, all the other Dr didn't even mention it...so I guess they know somehow that it was completed on file..
I felt much better as well once it was done and felt if anyone mentioned it I could say already looked into that part of it..
take care and let us know how things go
wobbly
I went to see a psych and got an assessment type of thing and I framed it, made copies to give to the Dr if necessary, but once I got it done, all the other Dr didn't even mention it...so I guess they know somehow that it was completed on file..
I felt much better as well once it was done and felt if anyone mentioned it I could say already looked into that part of it..
take care and let us know how things go
wobbly
Mistylee, WTF? This doctor is so out of line and should not be diagnosing psychiatric disorders when she is a neurologist, even though they do intensive study in that area as well.
The problem here is it will now be in your record - you have already processed that you need to follow through with a psych eval and clear this up and get it off the table once and for all.
And I would certainly like to know what medical school teaches that brain lesions are normal for any age - common in the elderly, yes. Normal, absolutely not, never!!!
I wish I could hope over there and help you battle this one - ....
So sorry this appt went bad.
feel better,
Lulu
Despondent? Don't give her that much power over you. Be angry instead.
The problem here is it will now be in your record - you have already processed that you need to follow through with a psych eval and clear this up and get it off the table once and for all.
And I would certainly like to know what medical school teaches that brain lesions are normal for any age - common in the elderly, yes. Normal, absolutely not, never!!!
I wish I could hope over there and help you battle this one - ....
So sorry this appt went bad.
feel better,
Lulu
Despondent? Don't give her that much power over you. Be angry instead.
Yes I think this neuro is seriously suffering from D.U.M.B disorder.
Doesn't help the complete humiliation I feel now and my husband probably thinks hes married to a hypochondriac!!
When I told her I was sick alot as a child she asked did I have a lot of time off school she probably thought hmmm, yes had this conversion disorder since childhood.
If she had asked the right questions she would know that I was seriously aneamic with a blood disorder and an immune system that was weakend. A proven fact by the blood results. Dont think my mental state could fake that!!!
I thought the same as you supermum. She had dx me before I got there. And as for dx somataform..... in my opinion shes not qualified to dx this.
As for Dr shopping...I hardly think 3 opinions in 4 years is DR shopping. If a neuro doesnt know what is wrong then obviously you seek a second opinion.
I am so upset I can't think straight. How can I get a DR to take me seriously now!!
My mother was told she was having anxiety and panic attacks when she had chest pain and breathlessness.. Didn't know anxiety could cause heart failure and kill someone. Thats what happened to my mum at 56 years old! F**** DRS!!
Please anyone , I am so despondant. How can I get someone to really listen and try to find out whats causing these problems. Can your body fail you like this and there not actually be anything wrong with you??
Can you have weak arms and differculty walking and no actuall cause??? Am I going mad????
I am so tired of looking for answers. I am going to insist on a psyc evaluation if only to clear up faking it and then give up I sopose. No DR is going to believe any thing I say now.
Mistylee
Doesn't help the complete humiliation I feel now and my husband probably thinks hes married to a hypochondriac!!
When I told her I was sick alot as a child she asked did I have a lot of time off school she probably thought hmmm, yes had this conversion disorder since childhood.
If she had asked the right questions she would know that I was seriously aneamic with a blood disorder and an immune system that was weakend. A proven fact by the blood results. Dont think my mental state could fake that!!!
I thought the same as you supermum. She had dx me before I got there. And as for dx somataform..... in my opinion shes not qualified to dx this.
As for Dr shopping...I hardly think 3 opinions in 4 years is DR shopping. If a neuro doesnt know what is wrong then obviously you seek a second opinion.
I am so upset I can't think straight. How can I get a DR to take me seriously now!!
My mother was told she was having anxiety and panic attacks when she had chest pain and breathlessness.. Didn't know anxiety could cause heart failure and kill someone. Thats what happened to my mum at 56 years old! F**** DRS!!
Please anyone , I am so despondant. How can I get someone to really listen and try to find out whats causing these problems. Can your body fail you like this and there not actually be anything wrong with you??
Can you have weak arms and differculty walking and no actuall cause??? Am I going mad????
I am so tired of looking for answers. I am going to insist on a psyc evaluation if only to clear up faking it and then give up I sopose. No DR is going to believe any thing I say now.
Mistylee
I thinks it's unethical for a doctor who is not a psychiatrist to diagnose somatoform disorder. It is OUTRAGEOUS that a doctor who does NOT know you can conclude such a diagnosis. It is another case of DUMB and STUPID.
I am sorry that this visit was a waste of your time and money. By her statements, she doesn't truly have a handle on MS patients and the way in which we don't always fall within the usual presentation. Like you say, you don't want MS, but it sure would be nice if a neurologist would monitor you and get to know you and not talk out their rear end. Then you wouldn't have to "doctor shop."
Take care.
I am sorry that this visit was a waste of your time and money. By her statements, she doesn't truly have a handle on MS patients and the way in which we don't always fall within the usual presentation. Like you say, you don't want MS, but it sure would be nice if a neurologist would monitor you and get to know you and not talk out their rear end. Then you wouldn't have to "doctor shop."
Take care.
COMMUNITY LEADER
I'm sorry it didn't go so well, I actually think you where dx with somatoform before you walked in the door. A bit suss that she mentioned Dr shopping, if this neuro spoke to one of the other neuro's or if she just knew about the others, dr shopping is one of the red flags for psychological. It think one of the other red flags was if the patient makes the dr feel annoyed, lovely hey!
As someone who was not happy with hearing the words stress or psych coming from my neuro, I quickly booked my self in for a psych assessment and knew with in days without a doubt that what i was experiencing had nothing to do with my perfectly healthy mental health. I have no regrets what so ever in seeing a psych and i would recommend seeing someone, if nothing else that alone has brought satisfaction and comfort to my own peace of mind.
My recommendation would be to refresh your memory and read the Lies my dr told me and D.U.M.B and S.T.U.P.I.D
JJ
As someone who was not happy with hearing the words stress or psych coming from my neuro, I quickly booked my self in for a psych assessment and knew with in days without a doubt that what i was experiencing had nothing to do with my perfectly healthy mental health. I have no regrets what so ever in seeing a psych and i would recommend seeing someone, if nothing else that alone has brought satisfaction and comfort to my own peace of mind.
My recommendation would be to refresh your memory and read the Lies my dr told me and D.U.M.B and S.T.U.P.I.D
JJ
Weii been to the neuro.....cost $340 only to be told after a 10 min exam that I am suffering from somataform disorder!!!
I am soooo annoyed I cannot tell you. I have had it with DRS . Ill be in a wheelchair before I go back.
She said that its normal to have 8 ,9 10, 15 lesions in your 30s. ITs age related. Well I stood up to her and told her its not normal to have that many lesions at my age especially if I am having symptoms. She didnt want to get into a disagreement over this as she has 15 years as a neuro and sees this regularly apparently.
She said there are a lot of people out there with symptoms like mine but they dont know what causes it. Its called somataform.
But its definately not MS. The symptoms although seem similar are not inline with MS symptoms and she would know as she sees lots of MS patients.
I told her I dont want an MS diagnosis I want to know whats wrong with me. She insinuated that some people go DR hopping seeking a diagnosis. I have seen 3 neuros over the 4 years.
Well I guess I better go to the DR and ask for a psyc assessment as I obviously have a mental disorder causing my symptom. I have never heard so much crap in my life as this!!!! ARGH!!!!
I am done! Finished with this crap! I will not put myself through this again!
Mistylee
I am soooo annoyed I cannot tell you. I have had it with DRS . Ill be in a wheelchair before I go back.
She said that its normal to have 8 ,9 10, 15 lesions in your 30s. ITs age related. Well I stood up to her and told her its not normal to have that many lesions at my age especially if I am having symptoms. She didnt want to get into a disagreement over this as she has 15 years as a neuro and sees this regularly apparently.
She said there are a lot of people out there with symptoms like mine but they dont know what causes it. Its called somataform.
But its definately not MS. The symptoms although seem similar are not inline with MS symptoms and she would know as she sees lots of MS patients.
I told her I dont want an MS diagnosis I want to know whats wrong with me. She insinuated that some people go DR hopping seeking a diagnosis. I have seen 3 neuros over the 4 years.
Well I guess I better go to the DR and ask for a psyc assessment as I obviously have a mental disorder causing my symptom. I have never heard so much crap in my life as this!!!! ARGH!!!!
I am done! Finished with this crap! I will not put myself through this again!
Mistylee
Wishing you the best of luck; I hope you're as lucky as I was when I finally found the right MS specialist on October 19 and am diagnosed, and am now injecting Avonex to slow down the progression.
Looking forward to hearing how your appointment went,
Kathy
Looking forward to hearing how your appointment went,
Kathy
good luck and try to relax... I know it's not easy. you seem prepared.
Let us know how things go..
take care
wobbly
Let us know how things go..
take care
wobbly
Mistylee,
Of course we wish you luck. And even more I wish for you to be meeting with a neuro who can use her own clinical skills and see what you intuitively know is wrong.
You have done a good job of compiling this concise recanting of your history - I hope you will print it out and take it along for her to read. Just the symptoms and not the second guessing about the lesions either.
Again, good luck with all of this.
be well,
Lulu
Of course we wish you luck. And even more I wish for you to be meeting with a neuro who can use her own clinical skills and see what you intuitively know is wrong.
You have done a good job of compiling this concise recanting of your history - I hope you will print it out and take it along for her to read. Just the symptoms and not the second guessing about the lesions either.
Again, good luck with all of this.
be well,
Lulu
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