Aa
looking for name of a mimic - mystery
My sister was getting her monthly Tysabri treatment last week and was kind enough (please sense sarcasm here) to share my story with a total stranger who was receiving a different IV treatment in the room with her. He told her ha has a mimic that is "just like MS except it's curable". She can only remember that it is known by a 4 letter acronym. Also that while her Tysabri is $3,000/month, his treatment is $11,000/treatment.
Excuse my sarcasm about her sharing my story, as I do reference her occasionally here, but every time she goes to the doc (one of the weenies we roasted a year ago) or for a treatment or to her inlaws... (you get the picture), she tells everyone she meets every detail of my "condition" for lack of a better word. I haven't even told my friends. My family were told by my dad, who has seen it in action, not by me. People at work know because they've seen it in action too. I get annoyed every now and then by this.
sorry for the rant - got off track. Does anyone know what mimic this might be? She wants me to be sure to have the new neuro rule it out. Lord I hope its nothing with an $11,000/treatment cure!!! I realize this is not much info to go on. Zilla - you're the sleuth...set loose the bloodhounds, lol!
Penn
Excuse my sarcasm about her sharing my story, as I do reference her occasionally here, but every time she goes to the doc (one of the weenies we roasted a year ago) or for a treatment or to her inlaws... (you get the picture), she tells everyone she meets every detail of my "condition" for lack of a better word. I haven't even told my friends. My family were told by my dad, who has seen it in action, not by me. People at work know because they've seen it in action too. I get annoyed every now and then by this.
sorry for the rant - got off track. Does anyone know what mimic this might be? She wants me to be sure to have the new neuro rule it out. Lord I hope its nothing with an $11,000/treatment cure!!! I realize this is not much info to go on. Zilla - you're the sleuth...set loose the bloodhounds, lol!
Penn
Is that Grave's disease? That's been ruled out already. I do have thyroid disease, but am hypothyroid.
Thanks for looking!
Penn
Thanks for looking!
Penn
I can't believe what docs are willing to chalk up to psychiatric symptoms, especially when they don't first explore the physical ones. I'm so sorry your experience was so poor and you weren't listened to.
As for the severe long lasting effects, my husband would have made an almost full recovery had he continued on with physio. He walks with a limp now, and when I say his right side is "weak", I mean it's really weak. He actually had hemiplegia with his ADEM, and although he has movement and sensation on his right side, his sensation is drastically decreased (when he got a 3rd degree burn he said 'it hurts a little'), and his dexterity is quite limited. Again, had he continued on with physio, his recovery would have been much better. But when you're 12, and it hurts, and it's darn hard, it's the last thing you want to do after spending 3 months in the hospital.
His acute attack actually occured over hours. His mom took him to the ER and the doc told her "he has the flu, he'll be fine by dinner time". A few hours later, and he was WAY weaker, and she took him back. Like you they thought it was psychological at first. Asked him a lot of questions about when his mom and dad seperated, and how often he got to see his dad, etc. Finally they called in a neurologist and BOOM, the kid was going for every test imaginable.
It's funny though, because I have a lot of "odd" sensations I just thought were normal, partly due to the fact that I would ask him if he had them, and he'd say yes! LOL We joke when we go in to the doctor about what a pathetic couple we are. I remember when we met, and then kept getting together for coffee, etc (as we were moving from 'getting to know eachother' to 'dating'), he used to just talk about "when I got sick". Finally one day he asks me "aren't you going to ask me what I was sick with or why I limp?" and I said "no" and he asked me "why not?". I just started laughing, because it's RUDE, that's why Mr.! Sure enough, I have seen him get questioned and teased (not meanly, but in a joking manner) since, and it makes me wonder why people feel it's your job to explain yourself to them.
Anyway...that's basically our story!
Christine
(un-dx)
As for the severe long lasting effects, my husband would have made an almost full recovery had he continued on with physio. He walks with a limp now, and when I say his right side is "weak", I mean it's really weak. He actually had hemiplegia with his ADEM, and although he has movement and sensation on his right side, his sensation is drastically decreased (when he got a 3rd degree burn he said 'it hurts a little'), and his dexterity is quite limited. Again, had he continued on with physio, his recovery would have been much better. But when you're 12, and it hurts, and it's darn hard, it's the last thing you want to do after spending 3 months in the hospital.
His acute attack actually occured over hours. His mom took him to the ER and the doc told her "he has the flu, he'll be fine by dinner time". A few hours later, and he was WAY weaker, and she took him back. Like you they thought it was psychological at first. Asked him a lot of questions about when his mom and dad seperated, and how often he got to see his dad, etc. Finally they called in a neurologist and BOOM, the kid was going for every test imaginable.
It's funny though, because I have a lot of "odd" sensations I just thought were normal, partly due to the fact that I would ask him if he had them, and he'd say yes! LOL We joke when we go in to the doctor about what a pathetic couple we are. I remember when we met, and then kept getting together for coffee, etc (as we were moving from 'getting to know eachother' to 'dating'), he used to just talk about "when I got sick". Finally one day he asks me "aren't you going to ask me what I was sick with or why I limp?" and I said "no" and he asked me "why not?". I just started laughing, because it's RUDE, that's why Mr.! Sure enough, I have seen him get questioned and teased (not meanly, but in a joking manner) since, and it makes me wonder why people feel it's your job to explain yourself to them.
Anyway...that's basically our story!
Christine
(un-dx)
Thanks for the personal information on your husbands case, It really helps me to see that ADEM can cause sevier residual damage. I too have weakness on the right side of my body since the attack. Not paralysis, just weaker and not as dominant as it was, I am right handed so I noticed this right away!
His experience of the onset being so sevier and acute sounds more like mine. It was something that hit instantly and I was in the hospital within a week, Eventhough it was the wrong kind of hospital.
I was put in a phyciatric unit for a week, because the ER doctor thought it was related to my history of depression and anxiety.I was very confused during this acute phase and could not hold a train of thought in my mind. It felt like I was slipping out of reality fast! I believe this was a depression of conciousness that they describe in ADEM.
Besides this I had sudden vision dysturbance and could not see enough to even find my hospital room. The doctors totally ignored the sudden vision loss and treated my illness as a episode of depression. They did finally take me (because I insisted) to an opthalmologist who done a fundiscopic exam and said my optic nerves were normal and so was my acuity! So they sent me home!
Once I got home I kept going to eye doctors until one of them finally listened to me and gave me a visual field test that showed an inferior harmonious quadranopsia(blindness in 1/4 of the vision field. This was five months after the onset.
Eight months after the onset I finally made it to the neurologist who found the 10 white matter lesions on my brain. I feel like posting a sign in all of the doctors offices who let me down that says this: SUDDEN VISION LOSS IS NOT A PHYCIATRIC PROBLEM, IT IS A NEUROLOGICAL ONE!!!!
ADEM is more common in children, because children have more viruses, infections and immunizations. But it can happen in adults too, and rarely even the elderly!
~Santana~
His experience of the onset being so sevier and acute sounds more like mine. It was something that hit instantly and I was in the hospital within a week, Eventhough it was the wrong kind of hospital.
I was put in a phyciatric unit for a week, because the ER doctor thought it was related to my history of depression and anxiety.I was very confused during this acute phase and could not hold a train of thought in my mind. It felt like I was slipping out of reality fast! I believe this was a depression of conciousness that they describe in ADEM.
Besides this I had sudden vision dysturbance and could not see enough to even find my hospital room. The doctors totally ignored the sudden vision loss and treated my illness as a episode of depression. They did finally take me (because I insisted) to an opthalmologist who done a fundiscopic exam and said my optic nerves were normal and so was my acuity! So they sent me home!
Once I got home I kept going to eye doctors until one of them finally listened to me and gave me a visual field test that showed an inferior harmonious quadranopsia(blindness in 1/4 of the vision field. This was five months after the onset.
Eight months after the onset I finally made it to the neurologist who found the 10 white matter lesions on my brain. I feel like posting a sign in all of the doctors offices who let me down that says this: SUDDEN VISION LOSS IS NOT A PHYCIATRIC PROBLEM, IT IS A NEUROLOGICAL ONE!!!!
ADEM is more common in children, because children have more viruses, infections and immunizations. But it can happen in adults too, and rarely even the elderly!
~Santana~
You're right on the money! Deep greens and blues are the colors I choose. (I am a huge James Taylor fan, too) And, like I've said before...if they're talking on-camera in an orange jumpsuit -- they're guilty! (And orange does make me look washed out).
You should join me when I hang my sleuthing shingle, Penn! You're good!
Anyway-- I guess my one-track mind has always had you pegged like your sisters -- MS. I don't know what else makes sense.
One gal's humble opinion.
Feel wellzapalooza,
Zilla*
You should join me when I hang my sleuthing shingle, Penn! You're good!
Anyway-- I guess my one-track mind has always had you pegged like your sisters -- MS. I don't know what else makes sense.
One gal's humble opinion.
Feel wellzapalooza,
Zilla*
My husband had ADEM as a child.
He had a very acute attack, starting with a spinal headache, then moving into extreme weakness (unable to sit up on his own, unable to walk), then feeling "like elephats were on his chest". He was hospitalized for 3 months, and showed 2 lesions on his brainstem during his first MRI (he had several, and several CT scans).
He saw the top MS Specialist in Canada at the time, who ruled out MS as the cause of his attack. He has residual symptoms, his right arm and leg are much weaker than the left. He has permanent foot drop on the right, as well as parathesias, apnea, RLS, and myoclonic jerks. It's been 22 years and he's holding steady where he is (recovery wise). Part of the reason he didn't make more of a complete recovery is that he decided he was DONE with physio therapy (when he was 12 or so).
Anyway, there a little insider info on ADEM, at least from a patient's perspective. I believe ADEM is considerably more common in children (but I could be wrong).
Christine
(un-dx)
He had a very acute attack, starting with a spinal headache, then moving into extreme weakness (unable to sit up on his own, unable to walk), then feeling "like elephats were on his chest". He was hospitalized for 3 months, and showed 2 lesions on his brainstem during his first MRI (he had several, and several CT scans).
He saw the top MS Specialist in Canada at the time, who ruled out MS as the cause of his attack. He has residual symptoms, his right arm and leg are much weaker than the left. He has permanent foot drop on the right, as well as parathesias, apnea, RLS, and myoclonic jerks. It's been 22 years and he's holding steady where he is (recovery wise). Part of the reason he didn't make more of a complete recovery is that he decided he was DONE with physio therapy (when he was 12 or so).
Anyway, there a little insider info on ADEM, at least from a patient's perspective. I believe ADEM is considerably more common in children (but I could be wrong).
Christine
(un-dx)
ADEM only has about a 5% mortality rate. It can cause mild to sevier damage to the CNS, but most people survive it. If it is ADEM it does not have a second attack, it is monophasic( meaning only one attack). If a second attack occurs then it could Still be ADEM, but falls more into the category of MDEM which stands for multiphasic disseminated encephalomyelitis. And if there are repeated attacks then it would be consistant with MS.
ADEM is at one end of the spectrum and MS is at the other more chronic end.
One attack would be ADEM, More than one attack would be MDEM or MS.
The reason that it is indistinguishable from MS in the acute phase is that in ADEM the myelin sleathe is damaged from a presumed auto immune response to a virus, bacteria, or reaction to an immunization or it can be of unknown cause, like with me. I beleive I may have had a reaction to the Paroxetine That I was Abruptly switched to six weeks prior to the attack or a withdrawl effect from being jerked off of the Zoloft that I had been on for 14 years without a taper! This only my belief, and I can not proove it!
The reason that I have not been DX with MS is because I have had only one attack that can be varified by clinical and radiological evidence. Eventhough I have multiple white matter lesions scattered through out the CNS, my neuro has stated that they all appear to be of the same age, indicating that they happened at the same time.
I have had repeat MRI of the brain with/without contrast every six months for the last two years. All of them showing no change in the 10 lesions, no enhancement, and no new lesions. If any of my future scans show any new lesions or ones in a different location and of a different age, then my DX will be changed to MS. But for now all they can do is watch me.
All of my symptoms are residual symptoms that are from the origional attack. I mean I don't have new ones. And most of the origional symptoms are almost gone, and have slowly healed over all of this time, never getting worse, only better!
I hope this helps you to rule ADEM either in or out as a possibility!
Hugs
~Santana~
ADEM is at one end of the spectrum and MS is at the other more chronic end.
One attack would be ADEM, More than one attack would be MDEM or MS.
The reason that it is indistinguishable from MS in the acute phase is that in ADEM the myelin sleathe is damaged from a presumed auto immune response to a virus, bacteria, or reaction to an immunization or it can be of unknown cause, like with me. I beleive I may have had a reaction to the Paroxetine That I was Abruptly switched to six weeks prior to the attack or a withdrawl effect from being jerked off of the Zoloft that I had been on for 14 years without a taper! This only my belief, and I can not proove it!
The reason that I have not been DX with MS is because I have had only one attack that can be varified by clinical and radiological evidence. Eventhough I have multiple white matter lesions scattered through out the CNS, my neuro has stated that they all appear to be of the same age, indicating that they happened at the same time.
I have had repeat MRI of the brain with/without contrast every six months for the last two years. All of them showing no change in the 10 lesions, no enhancement, and no new lesions. If any of my future scans show any new lesions or ones in a different location and of a different age, then my DX will be changed to MS. But for now all they can do is watch me.
All of my symptoms are residual symptoms that are from the origional attack. I mean I don't have new ones. And most of the origional symptoms are almost gone, and have slowly healed over all of this time, never getting worse, only better!
I hope this helps you to rule ADEM either in or out as a possibility!
Hugs
~Santana~
So what I assumed from what I read was incorrect. I thought that if this was the issue, I'd be a goner by now. I didn't realize you can have a second attack. How awful!
I knew I had seen it here on the forum fairly recently. I still think it's not what I have, though there are similar symptoms. I have distinguishable relapses and remissions (for lack of better terms. I hate to use those words coz it seems like I am assuming I have MS, which I do not assume). I've been on steroids a few times to relieve my buzzing, etc. Its been over a year and a half since my symptoms started, that is why I assumed ADEM would have "gotten" me by now if that were the problem.
It seems from what this man told my sister that the treatment is so extremely expensive that I don't see how anyone could afford it. Also the website I read did not seem nearly as optimistic as this man on "curing" it. It agreed with your info.
Take care and thanks for all the details. BTW - I've been to Sevierville, believe it or not! Stayed there when my family went to th eWorld's Fair in Knoxville! Small world!
Penn
I knew I had seen it here on the forum fairly recently. I still think it's not what I have, though there are similar symptoms. I have distinguishable relapses and remissions (for lack of better terms. I hate to use those words coz it seems like I am assuming I have MS, which I do not assume). I've been on steroids a few times to relieve my buzzing, etc. Its been over a year and a half since my symptoms started, that is why I assumed ADEM would have "gotten" me by now if that were the problem.
It seems from what this man told my sister that the treatment is so extremely expensive that I don't see how anyone could afford it. Also the website I read did not seem nearly as optimistic as this man on "curing" it. It agreed with your info.
Take care and thanks for all the details. BTW - I've been to Sevierville, believe it or not! Stayed there when my family went to th eWorld's Fair in Knoxville! Small world!
Penn
I am the one with an ADEM DX, for now at least. I definately had one sevier acute attack and have had no more in two years! I had the ecephalitis symptoms like mental status changes, depression of conciousness, trouble concentrating, memory loss, stiff neck, shooting thigh pain, back pain, vomiting, diareah. I also had what they think was Retroubular neuritis, a visual field defect and of course multifocal widespread white matter lesions on brain MRI.
ADEM is a monophasic(one time) illness that is usually acute and sevier in onset. I progressed to the maximum neurological dysfunction within three weeks. The onset was acute, while standing in a store. There is no cure for ADEM. If you survive the attack, then you are usually left with some residual damage.
All of the symptoms came together as a group and have remained that way slowly healing over the last two years. I didn't receive any treatment because the doctors did not believe that I couldn't see right. I was very confused, I am assuming from the brain inflammation that was sevier, but they passed it off as depression and anxiety which I do have a history of. It didn't help that I had an SSRI switch six weeks prior to the attack.
Anyway by the time they found the visual field defect, five months had passed. And by the time they got me to a neurologist and had an MRI done, eight months had passed. The acute phase was gone and it was too late for the steriods to do any good for me. Had They believed me, and had I received the steriods the recovery could have been as soon as three to six months. But as I stated above, it has been two years, and I still have residual damage.
The initial phase of ADEM is indistinguishable from the first attack of MS unless they do the bloodwork and spinal tap to identify the cause. For me these test was done much too late to pick up anything that may have been in the blood or spinal fluid. So, now I must be watched for a second attack, new lesions or any change to rule out MS, who knows for how long!
~Santana~
ADEM is a monophasic(one time) illness that is usually acute and sevier in onset. I progressed to the maximum neurological dysfunction within three weeks. The onset was acute, while standing in a store. There is no cure for ADEM. If you survive the attack, then you are usually left with some residual damage.
All of the symptoms came together as a group and have remained that way slowly healing over the last two years. I didn't receive any treatment because the doctors did not believe that I couldn't see right. I was very confused, I am assuming from the brain inflammation that was sevier, but they passed it off as depression and anxiety which I do have a history of. It didn't help that I had an SSRI switch six weeks prior to the attack.
Anyway by the time they found the visual field defect, five months had passed. And by the time they got me to a neurologist and had an MRI done, eight months had passed. The acute phase was gone and it was too late for the steriods to do any good for me. Had They believed me, and had I received the steriods the recovery could have been as soon as three to six months. But as I stated above, it has been two years, and I still have residual damage.
The initial phase of ADEM is indistinguishable from the first attack of MS unless they do the bloodwork and spinal tap to identify the cause. For me these test was done much too late to pick up anything that may have been in the blood or spinal fluid. So, now I must be watched for a second attack, new lesions or any change to rule out MS, who knows for how long!
~Santana~
I Googled ADEM, and I am certain that's what she meant, since in retrospect she did mention the mylein sheath. Definitely NOT me! Lord, I'd be dead after all this time if I had that. Plus the website does state one episode and encephalitis symptoms. I fit neithe rof those.
Z - what's your one track mind say? I'm not sure orange would be your color, dear! You're more of a blue or green - even yellow, but not orange! Besides doesn't orange mean you're guilty?
Thanks
Penn
Z - what's your one track mind say? I'm not sure orange would be your color, dear! You're more of a blue or green - even yellow, but not orange! Besides doesn't orange mean you're guilty?
Thanks
Penn
I think two smart ladies beat me to it!
ADEM would be semi-logical, but not for you, I don't believe. We need a neuro who thinks outside the box and treats symptoms aggresively and wisely!
I really need an orange jumpsuit if you linger here in Limbo much longer, Penn!
I'll keep thinking, too, but I'm afraid I have a one-track mind with you.
Z*
ADEM would be semi-logical, but not for you, I don't believe. We need a neuro who thinks outside the box and treats symptoms aggresively and wisely!
I really need an orange jumpsuit if you linger here in Limbo much longer, Penn!
I'll keep thinking, too, but I'm afraid I have a one-track mind with you.
Z*
That probably is what she's talking about. I think someone posted on it here before. What I have is definitely not one episode. I have weeks/months of very few symptoms and months of MUCH more frequent and severe symptoms.
Thanks so much for the info. I will read up on it, but I don't think its me. My sis probably didn't ask about relapses/remissions, or whatever I am experiencing is.
Thanks again! I will call her aqnd see if those initials sound familiar.
Penn
Thanks so much for the info. I will read up on it, but I don't think its me. My sis probably didn't ask about relapses/remissions, or whatever I am experiencing is.
Thanks again! I will call her aqnd see if those initials sound familiar.
Penn
So far I came up with ADEM, too and Lyme (which isn't an acronym).
I don't believe that ADEM is considered "curable"
I'll be thinking!
Quix
I don't believe that ADEM is considered "curable"
I'll be thinking!
Quix
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