Aa
Should i accept this diagnosis or could it still be ms
I have 2 bilateral parietal lesions on brain (1 either side) (1 small and 1 18mm in size). I also had raised protein when i had my lumbar puncture. I have had deteriating balance and gait over the last 10months which when i was walking i always veered to the left (unable to walk forward to right) and now I am in a wheelchair always when out and most time indoors. I have suffered severe tiredness over the last 6 years but now i have been diagnosed with sleep apneoa and i have a cpap machine. I also 7 years ago was diagnosed with overactive bladder after tests and at that time a stroke or tumour was suspected but my CT scan was clear. My Ct scan was also clear when i first presented with left leg paraylsis 18 months ago but a MRI showed up the lesions. My paraylsis returned after 2 weeks but my walking deteriated after that and then the balance became affected. I have had tests to rule out secondary cancer and at first they thought a stroke but that has also been ruled out. My visual evoke test was normal so they have ruled out MS. Now I am being told that it is a functional disorder as they do not think my lesions are in the right place to cause my symptoms. I am 49 should I accept this diagnosis and always be in a wheelchair or should i be looking else where. I have years ago (in my 20's) suffered from anxiety due to an overactive thyroid. Over the last 12 years i have had no bother with my thyroid and my anxiety and palpitations have ceased. I am very upbeat and i know i do not have depression. I want to get back to work and I would try anything to help my condition but my gut feeling is my condition is not functional. My neurologists say my lesions are a mystery. Please help
Hi Marie
My name is Julie, i live in greenock and im in the place called limbo. I have seen 2 different neuros both working out of The Southern General Glasgow.
Can you tell me who the doctor was that you saw.
If you would rather PM me and we can talk that way, and i can tell you my thoughts on the docs i have seen. Hope to hear from you soon.
Kindest Regards and best wishes
Julie xx
My name is Julie, i live in greenock and im in the place called limbo. I have seen 2 different neuros both working out of The Southern General Glasgow.
Can you tell me who the doctor was that you saw.
If you would rather PM me and we can talk that way, and i can tell you my thoughts on the docs i have seen. Hope to hear from you soon.
Kindest Regards and best wishes
Julie xx
Hi weemarie
I'm resuscitating this thread because I see you've just joined Limboland - and welcome!
I've read over your posts about your sx.
The one thing we have to remember is this is the NHS. The NHS will and routinely does dx seriously ill patients with this fictional 'conversion disorder'.
After they secretly started going down that route with me, I researched 'cd' thoroughly. There is no real basis for this notional disorder except that Freud 'discovered' it and actually exaggerated the case for his paper. It made him rich and famous and consigned many hundreds of thousands of mainly women to lifetimes of misery.
It's interesting and fascinating to look at the actual diagnostic criteria in e.g. DSM4 for this pernicious little number. I guarantee you'll be fuming by the end of it. From what I've read, you don't even fit the most basic 'diagnostic' sx. Note that 'cd' is a dx of exclusion. This means that every other possibility has to be ruled out before 'cd' is dx'd.
We must remember that the NHS will and can and does do anything to a) save money - neuro disorders are very expensive; and b) avoid saying it doesn't know and/or is wrong. It would rather we suffer and die than admit mistakes. In the meantime, especially as a woman one gets treated like a moronic fool and can end up with a severely messed up psyche because of this.
Something we Limbolanders have worked out is that the only person who knows our bodies inside and out is us. We've got quite a few stories now where a doc has dx'd some disease or other or sent us for tests confident that they'll be positive. And we've known in our bones these tests and dxes were wrong - and we've been proved right every time.
You have to trust your own intuition. You have to trust your body and what it's saying. If you feel strongly that your body is affected by a physical neurological disorder, then the overwhelming odds are that it's right.
Couple of examples: a close family member was fobbed off for years and years with this dx of neurosis/'cd'. After nearly 20 yrs she found that there was a simple blood test she could have done privately. The test came back positive for a life-threatening endocrine disorder amongst other complications and lesser diseases. But because the NHS had been fobbing her off for so many years and not treating her properly, the disease had run rampant and she is now so unnecessarily very severely disabled because of negligence.
And in my case, I kept on asking for tests and scans etc. Eventually got a plain xray which showed up heaps of physical signs and abnormalitites which explain most of my sx. I have now got to have top end MRIs/MRAs to look at the extent of the damage (half of which has been caused by neglect).
These are not isolated incidents. This 'cd' dx is widespread. It's lazy, incompetent and very dangerous.
So, marie...hang on in there. Don't let anyone tell you that what you're experiencing is just an affect of your mind.
I wish I'd realised all this when my sx kicked off. If I'd known then I would have gone straight to a top private neuro who was totally unconnected with my local gang. It would have been worth spending £thousands to avoid the mindbending misery my local gang have put me through over 5 years now. And I would have got my life and work back far more easily and quickly.
As I said, keep plugging away at them for a real diagnosis. And don't forget that Limboland is here also - there are many in similar positions and with a great deal of hard knowledge as well as empathy! You're welcome (though we're sorry you had to find us).
hugs to you and to all here on the MS board!
sammxx
I'm resuscitating this thread because I see you've just joined Limboland - and welcome!
I've read over your posts about your sx.
The one thing we have to remember is this is the NHS. The NHS will and routinely does dx seriously ill patients with this fictional 'conversion disorder'.
After they secretly started going down that route with me, I researched 'cd' thoroughly. There is no real basis for this notional disorder except that Freud 'discovered' it and actually exaggerated the case for his paper. It made him rich and famous and consigned many hundreds of thousands of mainly women to lifetimes of misery.
It's interesting and fascinating to look at the actual diagnostic criteria in e.g. DSM4 for this pernicious little number. I guarantee you'll be fuming by the end of it. From what I've read, you don't even fit the most basic 'diagnostic' sx. Note that 'cd' is a dx of exclusion. This means that every other possibility has to be ruled out before 'cd' is dx'd.
We must remember that the NHS will and can and does do anything to a) save money - neuro disorders are very expensive; and b) avoid saying it doesn't know and/or is wrong. It would rather we suffer and die than admit mistakes. In the meantime, especially as a woman one gets treated like a moronic fool and can end up with a severely messed up psyche because of this.
Something we Limbolanders have worked out is that the only person who knows our bodies inside and out is us. We've got quite a few stories now where a doc has dx'd some disease or other or sent us for tests confident that they'll be positive. And we've known in our bones these tests and dxes were wrong - and we've been proved right every time.
You have to trust your own intuition. You have to trust your body and what it's saying. If you feel strongly that your body is affected by a physical neurological disorder, then the overwhelming odds are that it's right.
Couple of examples: a close family member was fobbed off for years and years with this dx of neurosis/'cd'. After nearly 20 yrs she found that there was a simple blood test she could have done privately. The test came back positive for a life-threatening endocrine disorder amongst other complications and lesser diseases. But because the NHS had been fobbing her off for so many years and not treating her properly, the disease had run rampant and she is now so unnecessarily very severely disabled because of negligence.
And in my case, I kept on asking for tests and scans etc. Eventually got a plain xray which showed up heaps of physical signs and abnormalitites which explain most of my sx. I have now got to have top end MRIs/MRAs to look at the extent of the damage (half of which has been caused by neglect).
These are not isolated incidents. This 'cd' dx is widespread. It's lazy, incompetent and very dangerous.
So, marie...hang on in there. Don't let anyone tell you that what you're experiencing is just an affect of your mind.
I wish I'd realised all this when my sx kicked off. If I'd known then I would have gone straight to a top private neuro who was totally unconnected with my local gang. It would have been worth spending £thousands to avoid the mindbending misery my local gang have put me through over 5 years now. And I would have got my life and work back far more easily and quickly.
As I said, keep plugging away at them for a real diagnosis. And don't forget that Limboland is here also - there are many in similar positions and with a great deal of hard knowledge as well as empathy! You're welcome (though we're sorry you had to find us).
hugs to you and to all here on the MS board!
sammxx
Just a couple more thoughts for you:
MS lesions are commonly found in the parietal area.
Pain in the eye - you could possibly have optic neuritis. A large number of people who have a bout of optic neuritis go on to develop MS. It is possible to have retrobulbular (behind the eye) type that is not visible on an exam. Sometimes it can be seen later because the optic nerve can become "pale."
Urinary issues are a hallmark of MS
***********Very important - you absolutely MUST have a cervical and thoracic spine MRI. In my opinion, it would be malpractice if this has not been done for you.********
I am not suggesting you have MS but you have red flags waving loud and clear that this is a possibility.
Another thing, that I cannot stress enough, do not let the functional disorder diagnosis get to you or get in your way of proper care. I would have a very difficult time accepting that diagnosis with the lesions that you have, and the symptoms you have. Chin up. It is not unusual to have anxiety and/or depression when you find yourself in this situation. Just prior to my diagnosis I was admittedly anxious and made no apologies for it.
A negative LP and VEP doesn't mean much when diagnosing MS! I have definite MS and my LP was negative for o-band (slightly elevated protein) and I've never had a VEP.
How are your reflexes? Are they diminished or hyperactive? Become familiar with what a neurological exam should consist of. (also in the Health Pages)
As you can see by the responses to your post, a 2nd opinion is in order. Lesions should not be that much of a mystery to a competent neurologist. Have they offered you any treatment for this so-called disorder?
Keep us posted.
MS lesions are commonly found in the parietal area.
Pain in the eye - you could possibly have optic neuritis. A large number of people who have a bout of optic neuritis go on to develop MS. It is possible to have retrobulbular (behind the eye) type that is not visible on an exam. Sometimes it can be seen later because the optic nerve can become "pale."
Urinary issues are a hallmark of MS
***********Very important - you absolutely MUST have a cervical and thoracic spine MRI. In my opinion, it would be malpractice if this has not been done for you.********
I am not suggesting you have MS but you have red flags waving loud and clear that this is a possibility.
Another thing, that I cannot stress enough, do not let the functional disorder diagnosis get to you or get in your way of proper care. I would have a very difficult time accepting that diagnosis with the lesions that you have, and the symptoms you have. Chin up. It is not unusual to have anxiety and/or depression when you find yourself in this situation. Just prior to my diagnosis I was admittedly anxious and made no apologies for it.
A negative LP and VEP doesn't mean much when diagnosing MS! I have definite MS and my LP was negative for o-band (slightly elevated protein) and I've never had a VEP.
How are your reflexes? Are they diminished or hyperactive? Become familiar with what a neurological exam should consist of. (also in the Health Pages)
As you can see by the responses to your post, a 2nd opinion is in order. Lesions should not be that much of a mystery to a competent neurologist. Have they offered you any treatment for this so-called disorder?
Keep us posted.
I've never had a visual evoked potential, although I suspect it would read positive - I have a flaring black dot in my right eye.
However, as Misty says, you don't need a VEP to be diagnosed for MS. With your history of symptoms, and the two lesions in the parietal area, you're definitely suspicious for MS.
Your neuro sounds like he's trying to say it's all in your head. That should be a warning sign to find another neuro, quickly. Definitely get a second opinion, and make sure you have all your test results before you go. However, your second neuro should call for a whole new battery of tests, rather than relying on the ones the previous guy ordered.
However, as Misty says, you don't need a VEP to be diagnosed for MS. With your history of symptoms, and the two lesions in the parietal area, you're definitely suspicious for MS.
Your neuro sounds like he's trying to say it's all in your head. That should be a warning sign to find another neuro, quickly. Definitely get a second opinion, and make sure you have all your test results before you go. However, your second neuro should call for a whole new battery of tests, rather than relying on the ones the previous guy ordered.
Hi again,
I suggest you read up on the health pages , the mcdonald criteria for PPMS.
Have you had a spinal MRI????
If not then this should be done!! With the information you have given, if a positive spinal MRI, I think you would fit the criterier for PPMS, but thats just my thoughts.
Someone with more experience may be better advice but you need the spinal MRI.
Mistylee
I suggest you read up on the health pages , the mcdonald criteria for PPMS.
Have you had a spinal MRI????
If not then this should be done!! With the information you have given, if a positive spinal MRI, I think you would fit the criterier for PPMS, but thats just my thoughts.
Someone with more experience may be better advice but you need the spinal MRI.
Mistylee
Hi weemarie,
Well I had a negative visual evoked potential. That certainly does not rule out MS!!!!!!!
My neuro suspects MS .
Not all lesions are typical MS lesions. They can present as atypical such as in your case. My lesions are also atypical. Back before MRIs they use to dx without them.
It sounds like you may have had a slow deterioration rather than clear attacks that go into remission. It sometimes takes years for the lesions to show up as well.
Have you read the heath pages on here , top right. You may find these helpful.
Mistylee
Well I had a negative visual evoked potential. That certainly does not rule out MS!!!!!!!
My neuro suspects MS .
Not all lesions are typical MS lesions. They can present as atypical such as in your case. My lesions are also atypical. Back before MRIs they use to dx without them.
It sounds like you may have had a slow deterioration rather than clear attacks that go into remission. It sometimes takes years for the lesions to show up as well.
Have you read the heath pages on here , top right. You may find these helpful.
Mistylee
Sorry about that. The power in arm returned after 3 days. Since jan 2008 I have also suffered pain in my left eye and no one can tell mw what it is. I personally do not feel I have a functionall disorder but I find it hard to deal with, I am going for a second opinion but I am not sure if all the neurologist will stick together and not disagree with each other, I feel at 49 and to be in a wheelchair I find it difficult to understand why know one wants to try and find out if maybe it is something else. Should I be getting other types of tests. Your comments are most appreciated.
many thanks Marie
many thanks Marie
Hi karen,
Thank you for your e-mail and the time you took to look up functional disorder. I had my first MRI in jan 2008 I was fine up until then looking after my husband and 3 teenagers and doing all the usual running around. It was a Sunday afternoon and I went into the kitchen to make a cup of tea and when I turned I thought my foot had stuck on something sticky as my foot would not move properly of the ground to walk, as time went on I lost the power of my left leg. I was taken into hospital as they thought I had taken a stroke ( I also found i was unable to follow instructions at my normal pace something was not right). A cat scan at first was clear but because my reflexes were not good they sent me for a MRI which showed up 2 lesions ( 1 they thought explained a stroke and the other they were baffled, They contacted an neurologist who said that the lesions were the same but he could not say what they actually were and that was when i got the lumbar puncture. The power came back into my leg gradually after 10 days but it did leave a difference in my walking. In August that year I then lost the power of my right arm (days after having a severe spasm in my arm), They gave me another MRI and said that the lesions had not changed therefore they said it had not been a stroke as the lesions would have shrunk and they were 99% sure that it was not cancer. 1 lesion is small and the other is 18mm, both are well defined. Also during these summer months I noticed that was walking was deteriating and I was starting to veer to the left my gait was getting wider and my stride slower but I kept going even although my husband and myself thought that I was getting worse the more I did. I have run out of space Marie
Thank you for your e-mail and the time you took to look up functional disorder. I had my first MRI in jan 2008 I was fine up until then looking after my husband and 3 teenagers and doing all the usual running around. It was a Sunday afternoon and I went into the kitchen to make a cup of tea and when I turned I thought my foot had stuck on something sticky as my foot would not move properly of the ground to walk, as time went on I lost the power of my left leg. I was taken into hospital as they thought I had taken a stroke ( I also found i was unable to follow instructions at my normal pace something was not right). A cat scan at first was clear but because my reflexes were not good they sent me for a MRI which showed up 2 lesions ( 1 they thought explained a stroke and the other they were baffled, They contacted an neurologist who said that the lesions were the same but he could not say what they actually were and that was when i got the lumbar puncture. The power came back into my leg gradually after 10 days but it did leave a difference in my walking. In August that year I then lost the power of my right arm (days after having a severe spasm in my arm), They gave me another MRI and said that the lesions had not changed therefore they said it had not been a stroke as the lesions would have shrunk and they were 99% sure that it was not cancer. 1 lesion is small and the other is 18mm, both are well defined. Also during these summer months I noticed that was walking was deteriating and I was starting to veer to the left my gait was getting wider and my stride slower but I kept going even although my husband and myself thought that I was getting worse the more I did. I have run out of space Marie
"Functional Disorder" sounds like I don't know. If it were me I would no accept it as a diagnosis.
Alex
Alex
You need to find another doctor. This doctor doesn't seem to know his head from the other end of his body (I won't say it, but you know what I mean). Good grief, you have plenty of evidence of organic problems--lesions, elevated protein, sleep apnea, and in a wheelchair for cryin' out loud!
Because this brings up bad memories (I had someone tell me that I needed to see a psychiatrist when to see someone for a physical problem), it makes me so angry to see others like yourself, being treated this way because of their incompetency.
Have you had your TSH checked for hypothyroidism? Sometimes after years of being hyperthyroid, your thyroid stops working and goes hypo. It's just a thought. It could explain the numbness, fatigue, and possibly the sleep apnea. Hypothyroidism is something that has to be ruled out before an MS diagnosis is made (it's a mimic of MS)
I do not believe that the hypothyroidism causes lesions in your brain, though. However, often times people with MS often have other autoimmune diseases like thyroid disorders.
What about an MRI of the spine--have you hade one? Two lesions in the brain is nothing to brush off and is not normal for your age. The reason why they say that the lesions in your brain is a mystery and blame it on a smoke screen term is because your doctor is too lazy to figure out what is going on with you.
Deb
Because this brings up bad memories (I had someone tell me that I needed to see a psychiatrist when to see someone for a physical problem), it makes me so angry to see others like yourself, being treated this way because of their incompetency.
Have you had your TSH checked for hypothyroidism? Sometimes after years of being hyperthyroid, your thyroid stops working and goes hypo. It's just a thought. It could explain the numbness, fatigue, and possibly the sleep apnea. Hypothyroidism is something that has to be ruled out before an MS diagnosis is made (it's a mimic of MS)
I do not believe that the hypothyroidism causes lesions in your brain, though. However, often times people with MS often have other autoimmune diseases like thyroid disorders.
What about an MRI of the spine--have you hade one? Two lesions in the brain is nothing to brush off and is not normal for your age. The reason why they say that the lesions in your brain is a mystery and blame it on a smoke screen term is because your doctor is too lazy to figure out what is going on with you.
Deb
Hi again. My brief understanding on a functional disorder is that no known organic reason can be found for symptoms. When I looked up the symptoms of this disorder, they are eerily similar to MS. I would want a better explanation for the lesions and elevated protein in your spinal fluid. I would consider those of an "organic" nature.
We have had many discussions here where forum members are told they have a somatic disorder. Have you been evaluated by a psychiatrist, or has a neurologist who barely knows you come up with the functional disorder diagnosis?
What is their plan to treat you? Interestingly, while researching this topic, it is stated that stress always makes the symptoms worse. We have had a lot of discussion here lately how stress can make our symptoms worse. It is almost universal amongst us
Epilepsy, schizophrenia and other diseases were once considered a functional disorder.
From reading your post, is it correct to say that you have had terrible fatigue and bladder issues for 6-7 years and 10 months ago had an episode that has affected your ability to walk?
Do you have a copy of the written report of the brain MRI that describes the location of the lesions?
Please take a moment and read the Health Pages, yellow icon-right upper corner of this page. There are many topics regarding MRI's and the mimics of MS. It is important that you have had a full work up.
Please feel free to ask as many questions as you like. We have many smart and nice people here who will help you to sort this out.
We have had many discussions here where forum members are told they have a somatic disorder. Have you been evaluated by a psychiatrist, or has a neurologist who barely knows you come up with the functional disorder diagnosis?
What is their plan to treat you? Interestingly, while researching this topic, it is stated that stress always makes the symptoms worse. We have had a lot of discussion here lately how stress can make our symptoms worse. It is almost universal amongst us
Epilepsy, schizophrenia and other diseases were once considered a functional disorder.
From reading your post, is it correct to say that you have had terrible fatigue and bladder issues for 6-7 years and 10 months ago had an episode that has affected your ability to walk?
Do you have a copy of the written report of the brain MRI that describes the location of the lesions?
Please take a moment and read the Health Pages, yellow icon-right upper corner of this page. There are many topics regarding MRI's and the mimics of MS. It is important that you have had a full work up.
Please feel free to ask as many questions as you like. We have many smart and nice people here who will help you to sort this out.
Hello and welcome to the MedHelp MS Forum. I am sorry to hear that you are struggling with these symptoms. I have never heard of a "functional disorder" but I'll take a look around and see what the internet has to say. My gut feelings would be to question this diagnosis too. You are not functioning fully obviously, but I've never heard of that being a diagnosis in itself
Would you mind telling us what prompted you to have an MRI initially, and was this MRI the first you have had? Did the neurologists also obtain imaging of your cervical and thoracic spine?
I'll be right back.
Would you mind telling us what prompted you to have an MRI initially, and was this MRI the first you have had? Did the neurologists also obtain imaging of your cervical and thoracic spine?
I'll be right back.
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