Aa
facial droop/weakness...MS?
Hi all. Looking for some help. In 2010 I saw a doctor for a routine exam. He laid me back on the exam table and I told him I had vertigo. He looked into my eyes, saw nystagmus and rushed me to get an MRI. On the MRI they saw 2 punctate foci but said it was nothing out of the ordinary. No problems, case closed on anything scary.
Since that time I have been sick-well, sick-well with various balance problems, ringing in ears, horrible brain fog, muscle spasms, neck, back and joint pain and unrelenting fatigue. In Feburary 2013 I woke up one morning with problems, walking, talking and thinking. I saw a neuro and they said I had ataxia. I mentioned I had pressure on my ears and he prescribed me diamox to try and release the pressure. Long story short, I had a horrible reaction to that med. Very low blood pressure, extreme cognitive problems, more slurred speech and then numbness and tingling all down the right side of my body that landed me in the hospital for a weekend. No stroke was found on the MRI but the punctate foci were still there. (which is good i think because don't ms lesions dim out...??). So MS was ruled out again thank God.
I was eventually diagnosed with Ehlers-Danlos Syndrome and Dysautonomia. Many, many symptoms of EDS and MS overlap.
NOW, last Saturday I woke up and had some facial weakness. (Not EDS related) From my nose down on my right side my face is droopy and I talk kind of out of the side of my mouth a little bit. So, off to the neuro AGAIN. (Different doc this time...my other neuro was not very nice.) This guy is CONVINCED I have MS. I told him, "That's not possible. I have the MRI's and several neurologists have already ruled that out." He said, "I don't care. 5% of patients with MS have negative MRIs. So, I am currently sitting at home with an i.v. in my arm and have just had my first Solu-medrol infusion by an at home nurse. Within an hour the muscle spasms I was having in my back subsided. That is wonderful. My face is still the same but I've only had the first dose of a 3 day treatment of the steroid. Another MRI scheduled for next week. I'm not at all sure what to think at this point. What if nothing new shows up on my MRI (which is what I expect)? Will this guy still think or diagnose me with MS? Multiple Sclerosis is listed as my "diagnosis" on my paperwork. Is droopy face really that much of an indicator of MS without a stroke? Also scheduled for a VEP. I have already failed an ENG in the past.
Sorry so long winded...
Since that time I have been sick-well, sick-well with various balance problems, ringing in ears, horrible brain fog, muscle spasms, neck, back and joint pain and unrelenting fatigue. In Feburary 2013 I woke up one morning with problems, walking, talking and thinking. I saw a neuro and they said I had ataxia. I mentioned I had pressure on my ears and he prescribed me diamox to try and release the pressure. Long story short, I had a horrible reaction to that med. Very low blood pressure, extreme cognitive problems, more slurred speech and then numbness and tingling all down the right side of my body that landed me in the hospital for a weekend. No stroke was found on the MRI but the punctate foci were still there. (which is good i think because don't ms lesions dim out...??). So MS was ruled out again thank God.
I was eventually diagnosed with Ehlers-Danlos Syndrome and Dysautonomia. Many, many symptoms of EDS and MS overlap.
NOW, last Saturday I woke up and had some facial weakness. (Not EDS related) From my nose down on my right side my face is droopy and I talk kind of out of the side of my mouth a little bit. So, off to the neuro AGAIN. (Different doc this time...my other neuro was not very nice.) This guy is CONVINCED I have MS. I told him, "That's not possible. I have the MRI's and several neurologists have already ruled that out." He said, "I don't care. 5% of patients with MS have negative MRIs. So, I am currently sitting at home with an i.v. in my arm and have just had my first Solu-medrol infusion by an at home nurse. Within an hour the muscle spasms I was having in my back subsided. That is wonderful. My face is still the same but I've only had the first dose of a 3 day treatment of the steroid. Another MRI scheduled for next week. I'm not at all sure what to think at this point. What if nothing new shows up on my MRI (which is what I expect)? Will this guy still think or diagnose me with MS? Multiple Sclerosis is listed as my "diagnosis" on my paperwork. Is droopy face really that much of an indicator of MS without a stroke? Also scheduled for a VEP. I have already failed an ENG in the past.
Sorry so long winded...
Good advice here, but a few things I want to emphasize again.
No, MS lesions don't usually "dim out." They "may" resolve or get better, but that is not the norm.
Your MRI is not normal and does not rule out MS. You have two small lesions. Rather than "punctuate" I would like to hear the dimensions. 2mm is all that is needed to qualify as an MS lesion. 2mm to one radiologist might be punctate to another.
Vertigo is a VERY, VERY common symptom in MS as is facial weakness or (as JJ explained) Bell's Palsy. Your new neuro is setting out to figure this out. In MS terms, you have already had two attacks. You are responding to steroids, implying that this is an inflammatory problem. New MS symptoms often respond to steroids.
Hang in there. We'll help you interpret this stuff, but it sounds like your new neuro is already on the hunt.
Quix
No, MS lesions don't usually "dim out." They "may" resolve or get better, but that is not the norm.
Your MRI is not normal and does not rule out MS. You have two small lesions. Rather than "punctuate" I would like to hear the dimensions. 2mm is all that is needed to qualify as an MS lesion. 2mm to one radiologist might be punctate to another.
Vertigo is a VERY, VERY common symptom in MS as is facial weakness or (as JJ explained) Bell's Palsy. Your new neuro is setting out to figure this out. In MS terms, you have already had two attacks. You are responding to steroids, implying that this is an inflammatory problem. New MS symptoms often respond to steroids.
Hang in there. We'll help you interpret this stuff, but it sounds like your new neuro is already on the hunt.
Quix
COMMUNITY LEADER
Hi and welcome to our little MS community,
I really really like the way your new neurologist (MS specialist) is thinking............he is focused on what 'your' body is telling him ie clinical signs, as well as the various types of symptom you experience, your existing diagnoses and or medical history and not exclusively relying on the MRI to diagnose you. All of which is what any competent neurologist is suppose to do!
You said..... "(which is good i think because don't ms lesions dim out...??). So MS was ruled out again thank God.".....Unfortunately, you've been misinformed, MS can't actually be ruled out based on the lack of MRI evidence. There are quite a few reasons why an MRI may not actually show exactly what's going on eg MRI strength, not MS protocol, open vs closed etc etc The MRI findings are only suppose to be additional diagnostic evidence, that adds weight away from or towards potential causation. [see our health pages found at the bottom of the page]
I think "dim out" might be in reference to the way the MRI shows the difference between older established demyelinated lesions and the new or still demyelinating lesions which should light up with contrast if caught in time. 'IF' what your saying is that your lesions are still lighting up, that wouldn't actually mean they can't be MS lesions at all and could be supportive evidence that they are still demyelinating.
You ask....."What if nothing new shows up on my MRI (which is what I expect)?"...... I wouldn't be assuming anything, its true the MRI may not of changed but it's highly likely that it has in that time frame, and or due to having an MRI specifically looking for MS eg MS protocol (smaller slices), with and without contrast etc and the specific MRI differences, will potentially provide more than the previous MRI's did.
You ask....."Will this guy still think or diagnose me with MS? Multiple Sclerosis is listed as my "diagnosis" on my paperwork."......It's possible that he will stick to the dx he strongly believes is correct, based on your sx's and clinical evidence and clinical signs, until there is conclusive disputing evidence indicating an alternate dx.
You ask..... "Is droopy face really that much of an indicator of MS without a stroke?".......To be honest i'm not really sure what you mean, IF you haven't had a stroke, the droopy face and difficulty speaking (Bell's Palsy) could be associated to MS. "Bell's palsy can occur alone or with other indications of brain stem disorder." http://www.patient.co.uk/doctor/multiple-sclerosis-pro
Try to keep your self calm and focused on being open minded, it looks like you have found a neurologist who is trying to find the 'right' condition to explain every thing that has happened to you, he suspects MS but the answer may take some time to be confirmed, so hang in there!
Hugs...........JJ
I really really like the way your new neurologist (MS specialist) is thinking............he is focused on what 'your' body is telling him ie clinical signs, as well as the various types of symptom you experience, your existing diagnoses and or medical history and not exclusively relying on the MRI to diagnose you. All of which is what any competent neurologist is suppose to do!
You said..... "(which is good i think because don't ms lesions dim out...??). So MS was ruled out again thank God.".....Unfortunately, you've been misinformed, MS can't actually be ruled out based on the lack of MRI evidence. There are quite a few reasons why an MRI may not actually show exactly what's going on eg MRI strength, not MS protocol, open vs closed etc etc The MRI findings are only suppose to be additional diagnostic evidence, that adds weight away from or towards potential causation. [see our health pages found at the bottom of the page]
I think "dim out" might be in reference to the way the MRI shows the difference between older established demyelinated lesions and the new or still demyelinating lesions which should light up with contrast if caught in time. 'IF' what your saying is that your lesions are still lighting up, that wouldn't actually mean they can't be MS lesions at all and could be supportive evidence that they are still demyelinating.
You ask....."What if nothing new shows up on my MRI (which is what I expect)?"...... I wouldn't be assuming anything, its true the MRI may not of changed but it's highly likely that it has in that time frame, and or due to having an MRI specifically looking for MS eg MS protocol (smaller slices), with and without contrast etc and the specific MRI differences, will potentially provide more than the previous MRI's did.
You ask....."Will this guy still think or diagnose me with MS? Multiple Sclerosis is listed as my "diagnosis" on my paperwork."......It's possible that he will stick to the dx he strongly believes is correct, based on your sx's and clinical evidence and clinical signs, until there is conclusive disputing evidence indicating an alternate dx.
You ask..... "Is droopy face really that much of an indicator of MS without a stroke?".......To be honest i'm not really sure what you mean, IF you haven't had a stroke, the droopy face and difficulty speaking (Bell's Palsy) could be associated to MS. "Bell's palsy can occur alone or with other indications of brain stem disorder." http://www.patient.co.uk/doctor/multiple-sclerosis-pro
Try to keep your self calm and focused on being open minded, it looks like you have found a neurologist who is trying to find the 'right' condition to explain every thing that has happened to you, he suspects MS but the answer may take some time to be confirmed, so hang in there!
Hugs...........JJ
That is great (that he is a MS specialist) so then he would really know what he is doing. BUT try to keep calm because nothing is sure until you have got the final answer. As you know there are SO many mimics of MS and IF you have MS it is so different to each person. Let us know how it goes.
My best,
Dagun
My best,
Dagun
Dear Dagun,
Thank you for your reply. I really do like the new neuro. I just assumed that after so many other docs have said, "Can't be MS with a negative MRI" that we were done with this.
New neuro doc actually said, "It's MS to me until proven differently."
ENTIRELY different outlook from my other doctors. New guy is MS specialist and has been practicing 26 years. All my other docs have kind of been "young guns".
Thank you for your reply. I really do like the new neuro. I just assumed that after so many other docs have said, "Can't be MS with a negative MRI" that we were done with this.
New neuro doc actually said, "It's MS to me until proven differently."
ENTIRELY different outlook from my other doctors. New guy is MS specialist and has been practicing 26 years. All my other docs have kind of been "young guns".
Hi, I´m sorry that you are getting such a mixed information. It is hard not being sure what is going on. But I like this new neuro, he "sounds" great and is sending you for a new MRI so he is really trying to finish your diagnoses.
But it often takes time to figure this out when the symptoms and signs are not "straight from the book" of MS. It is not good to say if he is right or not, you just have to wait for that definite answer.
It is often "quiet" here at weekends, but if somebody in this great group of people has had a droopy face they will probably chip in here.
Wishing you the best,
Dagun
But it often takes time to figure this out when the symptoms and signs are not "straight from the book" of MS. It is not good to say if he is right or not, you just have to wait for that definite answer.
It is often "quiet" here at weekends, but if somebody in this great group of people has had a droopy face they will probably chip in here.
Wishing you the best,
Dagun
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