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Could old symptoms be more significant than I initially thought?
Hi everyone. I've just found this community and it seems quite active and informative. I've already found it valuable. So thank you all. My situation (I shall try for a hint of brevity at least) is as follows: I am 51 years old.
About 2 months ago I woke up (after a day that included some heavy housework followed by a very uncharacteristic and long nap) and my right leg and arm were NOT working properly- they felt as if all the "weight" had been taken out of them, and were floating and floppy and weak and I was dizzy. I freaked and was
thinking stroke so off to the ER we went. They looked me over (one doc clearly radiated the bored/disgusted demeanor that said, "Oh gawd, another overweight, middle-aged, menopausal, overwrought female.") ran a CAT and CAT-A, and declared I had no evidence of bleeds. During the time I was there, my leg and arm
regained some of their "weight" and coordination, so they were puzzled, but declared it likely a TIA, told me to take a 325 aspirin, see their stroke docs come Monday, and booted me to the curb.
The next day I was better-ish. Then I got worse again, with coordination and balance pretty shot. This was the shape of the next week(s), with my state getting better - albeit slowly - with ups and downs that were frustrating. I
could do things but not well. I broke countless dishes, dropped food, drink, and when I was being particularly spectacular, showered myself with barbeque sauce. I could walk but ran into walls and doorframes. I could barely type, and barely write - I have a daily log of the status of my signature, which at first, looked like the spidery, unsteady writing of a 90 year old woman. And a document that shows the sad state of my typing for about 2-3 weeks. Anyway, my status now is fully functional, although it took about a full month to get that back. What has
NOT left me from that time, is the dizziness, a nagging feeling of unsteadiness and uncoordination, and the fatigue - what vestiges of stamina I ever had, are completely shot.
During that time period, I have had 2 MRI's and a lumbar puncture. The MRI w/contrast showed 3 enhancing lesions somewhere on the left side (I have a detailed report of where exactly, but I confess my knowledge of brain anatomy is pretty poor) broadly consistent, at least, with right side impairment. The lumbar puncture showed a whopping 12 oligoclonal bands, 8 of which do not show up in my blood serum. And I am now scheduled for a MRI of my cervical and thoracic spine. Given my previous results, I'm not going to be surprised to get the grand trifecta of at least some evidence of old lesions in my spine. So it appears at the very least that I've had a CIS, and depending on the results of this next MRI, perhaps even clinically definite MS.
My question is this... I have long had what appears to be meralgia paresthetica in my left leg - which manifested long before I gained too much weight, but like a good self-flagellating person, I always chalked it up to the weight gain, and several years ago my GP was on board with the nerve entrapment explanation. The right leg was mostly uninvolved, but for a long time I've had a small numb patch on the outer right thigh. Annoying but not a real problem. I have also long had a small area high on my left back between the shoulder and spine, that has
periodically been numb and/or burning. It has done that for years, although not so much recently as it used to. Again, I chalked it up to some neck issues I've had and didn't give it too much energy. So I suppose the question is, given my recent revelations, is it worth revisting those symptoms as perhaps connected to my current situation? Or does it still sound as if they really are just what I thought and have no connection to a possible MS diagnosis? I am scheduled to give my new neuro a complete life's history this week, so I shall tell him about
all this. So if anyone cares to weigh in, what do you guys think?
About 2 months ago I woke up (after a day that included some heavy housework followed by a very uncharacteristic and long nap) and my right leg and arm were NOT working properly- they felt as if all the "weight" had been taken out of them, and were floating and floppy and weak and I was dizzy. I freaked and was
thinking stroke so off to the ER we went. They looked me over (one doc clearly radiated the bored/disgusted demeanor that said, "Oh gawd, another overweight, middle-aged, menopausal, overwrought female.") ran a CAT and CAT-A, and declared I had no evidence of bleeds. During the time I was there, my leg and arm
regained some of their "weight" and coordination, so they were puzzled, but declared it likely a TIA, told me to take a 325 aspirin, see their stroke docs come Monday, and booted me to the curb.
The next day I was better-ish. Then I got worse again, with coordination and balance pretty shot. This was the shape of the next week(s), with my state getting better - albeit slowly - with ups and downs that were frustrating. I
could do things but not well. I broke countless dishes, dropped food, drink, and when I was being particularly spectacular, showered myself with barbeque sauce. I could walk but ran into walls and doorframes. I could barely type, and barely write - I have a daily log of the status of my signature, which at first, looked like the spidery, unsteady writing of a 90 year old woman. And a document that shows the sad state of my typing for about 2-3 weeks. Anyway, my status now is fully functional, although it took about a full month to get that back. What has
NOT left me from that time, is the dizziness, a nagging feeling of unsteadiness and uncoordination, and the fatigue - what vestiges of stamina I ever had, are completely shot.
During that time period, I have had 2 MRI's and a lumbar puncture. The MRI w/contrast showed 3 enhancing lesions somewhere on the left side (I have a detailed report of where exactly, but I confess my knowledge of brain anatomy is pretty poor) broadly consistent, at least, with right side impairment. The lumbar puncture showed a whopping 12 oligoclonal bands, 8 of which do not show up in my blood serum. And I am now scheduled for a MRI of my cervical and thoracic spine. Given my previous results, I'm not going to be surprised to get the grand trifecta of at least some evidence of old lesions in my spine. So it appears at the very least that I've had a CIS, and depending on the results of this next MRI, perhaps even clinically definite MS.
My question is this... I have long had what appears to be meralgia paresthetica in my left leg - which manifested long before I gained too much weight, but like a good self-flagellating person, I always chalked it up to the weight gain, and several years ago my GP was on board with the nerve entrapment explanation. The right leg was mostly uninvolved, but for a long time I've had a small numb patch on the outer right thigh. Annoying but not a real problem. I have also long had a small area high on my left back between the shoulder and spine, that has
periodically been numb and/or burning. It has done that for years, although not so much recently as it used to. Again, I chalked it up to some neck issues I've had and didn't give it too much energy. So I suppose the question is, given my recent revelations, is it worth revisting those symptoms as perhaps connected to my current situation? Or does it still sound as if they really are just what I thought and have no connection to a possible MS diagnosis? I am scheduled to give my new neuro a complete life's history this week, so I shall tell him about
all this. So if anyone cares to weigh in, what do you guys think?
Well, I'm no stranger to either neuropathic pain or pain in general, having had fibro for about 5 years now. I've resisted the Cymbalta/Lyrica bus for quite a while. Cymbalta made me feel like a space case. But that may change if the pain level gets TOO high though. I've long taken LDN for fibro with results about as good as the other would have given, and all without the side effects. But I confess the pain level is back up to where it drove me to the doc suspecting fibro. I think I may have spasticity of some sort because since this manifested my low back pain has been exponentially MORE than it was before, and there is no other reason that that should be the case, given that it WAS getting better from seeing the PT. Now it is killing me all the time. And my ribs are spasming a bunch.
The doc wants me to get on Gilenya. Any experiences? Musings?
The doc wants me to get on Gilenya. Any experiences? Musings?
As Lulu says - Welcome to the club to which no one wants to belong :-)
The bad news is you have MS. The good news is you have MS. Now that you know you can fight back. Your treatment will likely have two parts. The first is fighting MS directly and the second is addressing symptoms.
You will likely be offered a wide range of MS treatments. there are now 10 or so disease modifying drugs (DMD's) available today. We have tried or are using all of them, so ask us questions.
Symptoms like pain can be addressed in parallel to the MS treatment. Antidepressants and anticonvulsant meds are often used alone or in combination to reduce neuropathic pain. Neuropathic pain is the result of bad info being received by pain centers in the body. There is nothing wrong with my feet, but without meds they hurt like hell.I take a combination of Lyrica (anticonvulsant) and Elavil (amitriptilyne - antidepressant) for neuropathic foot pain. Before meds my feet felt like someone had just dropped a bowling ball on them. It can take a while to find the right med or combo, and the right dose, but there is relief out there.
Some liken the process of gettin an MS diagnosis to the grieving process. Take your time. Ask us lots of questions. We've been where you are :-)
Kyle
The bad news is you have MS. The good news is you have MS. Now that you know you can fight back. Your treatment will likely have two parts. The first is fighting MS directly and the second is addressing symptoms.
You will likely be offered a wide range of MS treatments. there are now 10 or so disease modifying drugs (DMD's) available today. We have tried or are using all of them, so ask us questions.
Symptoms like pain can be addressed in parallel to the MS treatment. Antidepressants and anticonvulsant meds are often used alone or in combination to reduce neuropathic pain. Neuropathic pain is the result of bad info being received by pain centers in the body. There is nothing wrong with my feet, but without meds they hurt like hell.I take a combination of Lyrica (anticonvulsant) and Elavil (amitriptilyne - antidepressant) for neuropathic foot pain. Before meds my feet felt like someone had just dropped a bowling ball on them. It can take a while to find the right med or combo, and the right dose, but there is relief out there.
Some liken the process of gettin an MS diagnosis to the grieving process. Take your time. Ask us lots of questions. We've been where you are :-)
Kyle
Dx of MS.
I'm still trying to wrap my head around it. Even in somewhat expected, I'm kinda numb right now. (Not literally, thank goodness, but you know what I mean.) It's 1am here and I'm being true to my assertion that I get no sleep due to pain. And now pain and churning brain.
I'll post more details soon, but right now I'm going to attempt getting back to sleep. Wish me luck....
Oh, and my ignorance and 20 seconds look at that spinal MRI was as ignorant and short as I suspected. NO lesions in spine, which is great. I guess I was just seeing something hard and bony perhaps? The doc showed me the spine and it was clean. Also showed me the brain, and it was NOT. It's weird to see your own brain. I guess I should just be thrilled for photographic evidence that I HAVE one. :-\
zzzzzzzzzzzzzzz
I'm still trying to wrap my head around it. Even in somewhat expected, I'm kinda numb right now. (Not literally, thank goodness, but you know what I mean.) It's 1am here and I'm being true to my assertion that I get no sleep due to pain. And now pain and churning brain.
I'll post more details soon, but right now I'm going to attempt getting back to sleep. Wish me luck....
Oh, and my ignorance and 20 seconds look at that spinal MRI was as ignorant and short as I suspected. NO lesions in spine, which is great. I guess I was just seeing something hard and bony perhaps? The doc showed me the spine and it was clean. Also showed me the brain, and it was NOT. It's weird to see your own brain. I guess I should just be thrilled for photographic evidence that I HAVE one. :-\
zzzzzzzzzzzzzzz
I often can't fall asleep in my own bed anymore, due to pain. I'm not freaked by the tube, but by the prospect of torturous PAIN. This one was bearable, but I had one a few months back that was worthy of the Spanish Inquisition.
I've gotten to the point that I can fall asleep whin in the tube. It makes things go a lot easier :-)
Kyle
Kyle
Well, that was pretty brutal. And here I thought I was an old hand at MRIs. Over 2 hours in there. Maybe the "over" part is because I had short (3-4minutes) breaks in between each section due to having to move to alleviate the right-on-the-edge-of-going-ballistic nerve pain in my legs, but any way you slice it (a bit of MRI humor there) that was one long dang test! I feel like I've been run over by a truck.
One of the techs, at my behest, gave me a brief view of some side views of my spine. I hope those 2 glaring white spots I saw (I did NOT say OMG to him, and the view I had was only about 20 seconds) were some sort of artifact of the imaging, and not some sort of...thing. But nothing surprises me anymore.
So, the radiologists are supposed to expedite the reading and report, since I've got my appt with the doc at 8am tomorrow. It should be interesting....
One of the techs, at my behest, gave me a brief view of some side views of my spine. I hope those 2 glaring white spots I saw (I did NOT say OMG to him, and the view I had was only about 20 seconds) were some sort of artifact of the imaging, and not some sort of...thing. But nothing surprises me anymore.
So, the radiologists are supposed to expedite the reading and report, since I've got my appt with the doc at 8am tomorrow. It should be interesting....
Ess -
I spoke not to his body of work in toto, but rather to one specific dmeonstration, which I still find brilliant :-)
Follow the yellow brick road....(not)
Kyle
I spoke not to his body of work in toto, but rather to one specific dmeonstration, which I still find brilliant :-)
Follow the yellow brick road....(not)
Kyle
Kyle,
That's why Oz is so dangerous. I understand that he's a wonderful heart surgeon, and he does know a lot about a lot of medical stuff. Yet he mixes that in with pure hogwash. Not all that long ago I heard him say that antihistamines are bad for you, and that you can virtually think your allergies away, or words to that effect. I'd love him to live a single day with my nose!
People who admire the good stuff (MS/dominos analogy, for instance) may believe without questioning the many truly horrible things he says.
ess
That's why Oz is so dangerous. I understand that he's a wonderful heart surgeon, and he does know a lot about a lot of medical stuff. Yet he mixes that in with pure hogwash. Not all that long ago I heard him say that antihistamines are bad for you, and that you can virtually think your allergies away, or words to that effect. I'd love him to live a single day with my nose!
People who admire the good stuff (MS/dominos analogy, for instance) may believe without questioning the many truly horrible things he says.
ess
Hi Artanis -
I don't have any valuable insights, but wanted to let you know you are not alone. My story has so many similarities to yours - including the imbalance, fatigue, and coordination issues. I used to be an incredibly fast typer! Now I can barely get a sentence out without having to correct mis-keys several times.
I will be looking for your posts to see how your appointment goes. I am having the last of a long series of tests today, and have decided that if everything comes back normal, I will just wait to see if I have more measurable symptoms again in the future...and then hope that I can see a neurologist while they are occurring. It's too hard to describe what is going on & too difficult to know what happened in the past but has resolved.
Wishing you all the best for an insightful appointment with your neurologist.
I don't have any valuable insights, but wanted to let you know you are not alone. My story has so many similarities to yours - including the imbalance, fatigue, and coordination issues. I used to be an incredibly fast typer! Now I can barely get a sentence out without having to correct mis-keys several times.
I will be looking for your posts to see how your appointment goes. I am having the last of a long series of tests today, and have decided that if everything comes back normal, I will just wait to see if I have more measurable symptoms again in the future...and then hope that I can see a neurologist while they are occurring. It's too hard to describe what is going on & too difficult to know what happened in the past but has resolved.
Wishing you all the best for an insightful appointment with your neurologist.
Even a doctor reduced to a product shill can be right and cogent SOMETIMES I guess. He's still not off the hook for peddling snake oil though.
And after my rant, can I indulge in a bit of denialism/magical thinking myself, and hope beyond hope that the tests and risk factors are all meaningless, that I AM just a hysterical almost-menopausal woman, and this is all some crap I made up for attention? I will happily let someone slap the label "crazy" on me, for NOT having this end up as MS, truly.
I confess to a bit of true irrationality for a bit though. When the "event" happened, since my spidey sense was pretty sure it was neurological and not a stroke in spite of some superficial similarities , the first thought that ran through my panicked brain was ALS. Yes, yes, I know that is NOT how ALS appears one day, believe me, no one better, but it was my id overcoming my rational ego, I can tell ya. I probably DID appear to be out of my mind, but I watched my mother die from ALS, so NOT thinking about ALS has dominated my life since her death, and sudden motor impairment kinda ripped the scab off, you know?
I'm more rational now, but that has its own downsides, one of which is a cold look at statistics and probable reality.
I sometimes hate being a grownup.....
And again, thanks for the warm welcome guys. No matter how this pans out in the end, you've been a great help and made me feel welcomed. I appreciate it bunches! :)
And after my rant, can I indulge in a bit of denialism/magical thinking myself, and hope beyond hope that the tests and risk factors are all meaningless, that I AM just a hysterical almost-menopausal woman, and this is all some crap I made up for attention? I will happily let someone slap the label "crazy" on me, for NOT having this end up as MS, truly.
I confess to a bit of true irrationality for a bit though. When the "event" happened, since my spidey sense was pretty sure it was neurological and not a stroke in spite of some superficial similarities , the first thought that ran through my panicked brain was ALS. Yes, yes, I know that is NOT how ALS appears one day, believe me, no one better, but it was my id overcoming my rational ego, I can tell ya. I probably DID appear to be out of my mind, but I watched my mother die from ALS, so NOT thinking about ALS has dominated my life since her death, and sudden motor impairment kinda ripped the scab off, you know?
I'm more rational now, but that has its own downsides, one of which is a cold look at statistics and probable reality.
I sometimes hate being a grownup.....
And again, thanks for the warm welcome guys. No matter how this pans out in the end, you've been a great help and made me feel welcomed. I appreciate it bunches! :)
OOPS....
He tapped the first domino and they fell in order until the last dropped.
Then he said "MS interupts the flow of information." He then started the second set of dominos. When the cascade reached the missing domino it stopped, leaving half of the dominos still standing.
I thought it was brilliant :-)
Kyle
He tapped the first domino and they fell in order until the last dropped.
Then he said "MS interupts the flow of information." He then started the second set of dominos. When the cascade reached the missing domino it stopped, leaving half of the dominos still standing.
I thought it was brilliant :-)
Kyle
Dr. Oz may be a product shill, but he did once show the best visualization of MS I have ever seen. He had two nearly identical dominos set-ups. THe only
difference was that one set has a domino missing.
He said the first dominos were the start of the CNS information path. and the last were your left foot.
"Let's say you want to move your left foot. The information moves from your brain to your foot." He tapped the first domino
difference was that one set has a domino missing.
He said the first dominos were the start of the CNS information path. and the last were your left foot.
"Let's say you want to move your left foot. The information moves from your brain to your foot." He tapped the first domino
Love this! Rant away. I always feel better when I do. But you might as well save your breath when others refuse to understand the basics of science. It's a hopeless cause.
And yes, Dr. Oz is a quack, in my estimation. Some of his comments truly belong in Bizarro World. He can be dangerous.
ess
And yes, Dr. Oz is a quack, in my estimation. Some of his comments truly belong in Bizarro World. He can be dangerous.
ess
I hear ya Ess! I do. You don't even want to get me started on my family's addiction to magical thinking and unawareness of their own cognitive biases. It makes keeping them updated on my status somewhat fraught, with me usually getting a bit annoyed that they think they have a good bead on the situation based on a book they read. I snapped at one family member, who defensively said, "But the book I read was written by a DOCTOR!", "Well, Dr. Oz is a DOCTOR too, but he's just ONE doctor and he's still a quack!! And honestly, do you really think that no one in the MS community has thought of this stuff before YOU?? If this was that easy, I guarantee you, they'd have fixed it decades ago! And you can't throw all these supposed "cures" at this condition at the same time because then you'll have zero idea which thing may actually be working!! You must control other variables in order to effectively test for ONE at a time!" He sputtered a bit. I love him dearly, but scientifically minded he ain't.....
Yes, it's maddening when others tell us that we just have to stop gluten, or artificial sweeteners, or add more xyz to our diets, and all will be well.
It's equally crazy-making when we get into a state of utter exhaustion, to be told, 'Oh, I get tired a lot too.' Not saying others don't get tired, of course they do, it's just that by making such comments they come across as either trivializing our MS experience or as experts on something they know next to nothing about.
Other than my sister, my family members tend not to ask about my MS. I am quite ambulatory and look quite normal (except when using stairs). I don't see them often, really, so when I do I can 'put on a party face' most of the time. That's good, and what I want. I don't even mention it when I'm having a hard time, flare or otherwise, but just usually beg off if I need to.
Anyway, this is not to hijack your thread, but to say that yes, others don't get it, and at times that drives us up a wall. But that's what we have this forum for! Feel free to rant or vent as the need arises, and of course feel free to tell us about lots of other stuff too. Believe it or not, we can be a fun bunch.
ess
It's equally crazy-making when we get into a state of utter exhaustion, to be told, 'Oh, I get tired a lot too.' Not saying others don't get tired, of course they do, it's just that by making such comments they come across as either trivializing our MS experience or as experts on something they know next to nothing about.
Other than my sister, my family members tend not to ask about my MS. I am quite ambulatory and look quite normal (except when using stairs). I don't see them often, really, so when I do I can 'put on a party face' most of the time. That's good, and what I want. I don't even mention it when I'm having a hard time, flare or otherwise, but just usually beg off if I need to.
Anyway, this is not to hijack your thread, but to say that yes, others don't get it, and at times that drives us up a wall. But that's what we have this forum for! Feel free to rant or vent as the need arises, and of course feel free to tell us about lots of other stuff too. Believe it or not, we can be a fun bunch.
ess
Many thanks to all who took time to reply. I really do appreciate it.
I promise not to bore the man, nor try to diagnose myself. And after all the stupidity from friends and family who, on the basis of this or that drib of info, try to say "Well, it's OBVIOUS that vitamin D/gluten/general diet is THE culprit". It almost makes me grind my teeth. I assure you, I'm even less inclined to look for single causes than normal. Besides, looking for a single causes or simple answers to complex issues of ANY kind, is not my style and never has been.
Per the good advice I've received, I'm typing a short and sweet list of surgeries, illnesses of note, (NOT every cold I've ever had), and conditions/odd symptoms since adulthood. Hopefully he will find it helpful and timesaving.
I'll let you guys know as soon as I know anything new.
I promise not to bore the man, nor try to diagnose myself. And after all the stupidity from friends and family who, on the basis of this or that drib of info, try to say "Well, it's OBVIOUS that vitamin D/gluten/general diet is THE culprit". It almost makes me grind my teeth. I assure you, I'm even less inclined to look for single causes than normal. Besides, looking for a single causes or simple answers to complex issues of ANY kind, is not my style and never has been.
Per the good advice I've received, I'm typing a short and sweet list of surgeries, illnesses of note, (NOT every cold I've ever had), and conditions/odd symptoms since adulthood. Hopefully he will find it helpful and timesaving.
I'll let you guys know as soon as I know anything new.
I had MS for over 40 years when I was diagnosed at age 46. I had always had abnormal reflexes and such. When you look at a MRI or picture of my eye all the damage was old.My MS symptoms did not change so they did not think it was MS for two years of tests. ERs are not good places for diagnosing anything except stroke or heart attack. They miss out on other stuff.
I keep everything I give a doctor to two pages or less.
Neurologist are a different breed. I let them do there thing then I bring up concerns when they ask me to.
Alex
I keep everything I give a doctor to two pages or less.
Neurologist are a different breed. I let them do there thing then I bring up concerns when they ask me to.
Alex
Hi Artanis - Welcome to the group.
At this stage it is tempting to try and find a single cause for multiple symptoms. This is an unlikely task. That we have MS does not excuse us from having other maladies. We can try and help ou sort through the MS stuff.
I was idagnosed 3 years ago, at 51. We were able to draw i line from m ne diagnosis to an episode that happed 20 years earlier. So yes, there is value in establishing a link between earlier symptoms and your current state.
Part of the diagnostic criteria for MS is 'disemmination in time'. This means that there is evidence of MS related activity in at least two different episodes separated by at least 30 days. The evidence can be on an MRI, with some lesions enhancing and some not on a single study. The evidence can also be clinical. This means that the old sypmtoms you describe can be atributed to MS. Either, or both, would potentially move you from CIS to MS.
The clinical exam to be performed by your new neuro (hoping as ess suggested that he is an MS specialist) is the most important part of your diagnostic process. MS is a clinical diagnosis. All testing is done to support the clinical findings.
MS has no known cause. It is not caused by any external stimulation or insult. The changes you experienced based on the heart procedure, and aftercare, would likely be unrealted to MS. When you meet eith the new neuro, try and have a list of the top 5 symptoms, in terms of impact on quality of life. I would also have a brief timeline beginning with the earliest neurological symtoms you remember.
GO in with an open mind. I would not bring up MS, or any diagnosis. Let him. He's being well paid and should do the heavy lifting.
Keep us posted.
Kyle
At this stage it is tempting to try and find a single cause for multiple symptoms. This is an unlikely task. That we have MS does not excuse us from having other maladies. We can try and help ou sort through the MS stuff.
I was idagnosed 3 years ago, at 51. We were able to draw i line from m ne diagnosis to an episode that happed 20 years earlier. So yes, there is value in establishing a link between earlier symptoms and your current state.
Part of the diagnostic criteria for MS is 'disemmination in time'. This means that there is evidence of MS related activity in at least two different episodes separated by at least 30 days. The evidence can be on an MRI, with some lesions enhancing and some not on a single study. The evidence can also be clinical. This means that the old sypmtoms you describe can be atributed to MS. Either, or both, would potentially move you from CIS to MS.
The clinical exam to be performed by your new neuro (hoping as ess suggested that he is an MS specialist) is the most important part of your diagnostic process. MS is a clinical diagnosis. All testing is done to support the clinical findings.
MS has no known cause. It is not caused by any external stimulation or insult. The changes you experienced based on the heart procedure, and aftercare, would likely be unrealted to MS. When you meet eith the new neuro, try and have a list of the top 5 symptoms, in terms of impact on quality of life. I would also have a brief timeline beginning with the earliest neurological symtoms you remember.
GO in with an open mind. I would not bring up MS, or any diagnosis. Let him. He's being well paid and should do the heavy lifting.
Keep us posted.
Kyle
Thanks essdipity for your reply.
This doc won't be asking why I'm there - he has essentially already been directing my testing and care, because he is the one who took on my case when the neuro I WAS seeing was on an extended vacation. I told this group (associated with a university) that I was unwilling to wait until the first neuro (a specialist in stroke, not MS) was back, and who was going to report to me the results of all these MRIs? Anyway, long story short, he and I have had several in-depth phone discussions and he has since gotten his colleague's notes, has spoken with her directly (they are in the same office) and was the one to order the LP, and has been following its results, and has been the one to order the spinal MRI. My first neuro officially passed me over to him last week, so this week's office visit will just be a bit of a formality - the first time I've seen him in person. I can tell HE thinks this is MS, since he has already said I've had a CIS and seemed more determined after finding 8 oligoclonal bands. He has already mentioned a long talk about the med options going forward.
I've had oodles of blood work and yes I'm deficient in B12 and D, and at the second neuro's behest, have been supplementing heavily for over 2 weeks already. I have no other characteristic B12 deficiency symptoms though, and the MRI reports indicated that the lesions were consistent with an autoimmune demyelinating disease, with no edema, evidence of infarct, and anything metastatic was pretty much low on the list of suspected processes. The other blood work ruled out some other autoimmune stuff like Lupus, any thyroid issues, and showed I'm not diabetic, my lipids are fine, and I have neither syphillis nor HIV. So pretty much, all the low hanging fruit has been ruled out. No test for Lyme though, as I recall.
He will likely NOT find an abnormality in strength, coordination, etc., certainly not at this point. AS I said, right now it's more an interior feeling of dizziness/floating, and a subtle balance thing. I move very slowly because of it. At the time, neither my GP nor the other neuro, could find anything overt during their initial exams which were both a mere several days after the worst of it, but my very thorough PT (I was seeing him for some low back issues) DID, since he had a baseline and they did not. Even he said the differences in strength and coordination were somewhat subtle and baffling, although me falling into and down a wall while trying to do one of his wicked balance tests WAS a bit of a givaway, IMO. My initial neuro was kind of married to the idea of untreated migraines being the cause, but I never was.
Just to be a bit more informative, the reason I was seeing the PT is a bit roundabout, but related to this whole thing. REmember I mentioned the little numb patch on my right leg? Well, I had a heart ablation in May, (the only thing that has gone right for me this year it seems) and when I came out of that 5.5 hr flat-on-my-back surgery, and endured the nurses applying massive pressure to the groin punctures, AND had to lie flat on my back for another 4 hours afterwards, I found that the right leg that was once only had the numb patch, was 10 times WORSE in pain and numbness than the left leg, which was also massively unhappy about the surgery. I thought to myself, hmmm...unless I gained 25 lbs ON the table, this leg pain thing looks like it might be related to my low back issues, NOT nerve entrapment due to weight. I had long suspected a correlation since when my back would act up, so would my left leg get worse. Anyway, the GP did a lumbar MRI, found some arthrosis, but nothing overt like stenosis. But since I was still having nerve pain (my initial complaint), sent me to the first neuro of my tale. SHE is the one also suspected my back was the source of the nerve irritation, an who sent me to the PT to see if that would help. So now you know why I had been under the care of the first neuro and the PT. The rest just kind of flows from that. So the right leg really could just be structural, who knows.
I will try to get a timeline of this stuff together though, that is a very good idea to write it up, for myself as well as the doc. I'll be sure and keep you posted as to this week's MRI. I'm sure the visit with this doc will be interesting regardless of the results.
This doc won't be asking why I'm there - he has essentially already been directing my testing and care, because he is the one who took on my case when the neuro I WAS seeing was on an extended vacation. I told this group (associated with a university) that I was unwilling to wait until the first neuro (a specialist in stroke, not MS) was back, and who was going to report to me the results of all these MRIs? Anyway, long story short, he and I have had several in-depth phone discussions and he has since gotten his colleague's notes, has spoken with her directly (they are in the same office) and was the one to order the LP, and has been following its results, and has been the one to order the spinal MRI. My first neuro officially passed me over to him last week, so this week's office visit will just be a bit of a formality - the first time I've seen him in person. I can tell HE thinks this is MS, since he has already said I've had a CIS and seemed more determined after finding 8 oligoclonal bands. He has already mentioned a long talk about the med options going forward.
I've had oodles of blood work and yes I'm deficient in B12 and D, and at the second neuro's behest, have been supplementing heavily for over 2 weeks already. I have no other characteristic B12 deficiency symptoms though, and the MRI reports indicated that the lesions were consistent with an autoimmune demyelinating disease, with no edema, evidence of infarct, and anything metastatic was pretty much low on the list of suspected processes. The other blood work ruled out some other autoimmune stuff like Lupus, any thyroid issues, and showed I'm not diabetic, my lipids are fine, and I have neither syphillis nor HIV. So pretty much, all the low hanging fruit has been ruled out. No test for Lyme though, as I recall.
He will likely NOT find an abnormality in strength, coordination, etc., certainly not at this point. AS I said, right now it's more an interior feeling of dizziness/floating, and a subtle balance thing. I move very slowly because of it. At the time, neither my GP nor the other neuro, could find anything overt during their initial exams which were both a mere several days after the worst of it, but my very thorough PT (I was seeing him for some low back issues) DID, since he had a baseline and they did not. Even he said the differences in strength and coordination were somewhat subtle and baffling, although me falling into and down a wall while trying to do one of his wicked balance tests WAS a bit of a givaway, IMO. My initial neuro was kind of married to the idea of untreated migraines being the cause, but I never was.
Just to be a bit more informative, the reason I was seeing the PT is a bit roundabout, but related to this whole thing. REmember I mentioned the little numb patch on my right leg? Well, I had a heart ablation in May, (the only thing that has gone right for me this year it seems) and when I came out of that 5.5 hr flat-on-my-back surgery, and endured the nurses applying massive pressure to the groin punctures, AND had to lie flat on my back for another 4 hours afterwards, I found that the right leg that was once only had the numb patch, was 10 times WORSE in pain and numbness than the left leg, which was also massively unhappy about the surgery. I thought to myself, hmmm...unless I gained 25 lbs ON the table, this leg pain thing looks like it might be related to my low back issues, NOT nerve entrapment due to weight. I had long suspected a correlation since when my back would act up, so would my left leg get worse. Anyway, the GP did a lumbar MRI, found some arthrosis, but nothing overt like stenosis. But since I was still having nerve pain (my initial complaint), sent me to the first neuro of my tale. SHE is the one also suspected my back was the source of the nerve irritation, an who sent me to the PT to see if that would help. So now you know why I had been under the care of the first neuro and the PT. The rest just kind of flows from that. So the right leg really could just be structural, who knows.
I will try to get a timeline of this stuff together though, that is a very good idea to write it up, for myself as well as the doc. I'll be sure and keep you posted as to this week's MRI. I'm sure the visit with this doc will be interesting regardless of the results.
Hi, Artanis.
Here's what I'd do---I'd make a timeline which includes these old 'oddities' as well as what's happened recently. I'd do it in bullet form, not speculating about possible causes. I'd include what you've done about the symptoms, even if at one time that was nothing.
I'd keep this very short and sweet, and I'd bring it to the appointment, along with a copy for myself, also the reports of any tests you've had that could be related. Then when the doctor asks why I'm there, I'd give him the paper, hoping he or she would read it. If not, at least it will be in my file. And
that way I'd also have a reference to look at. Sometimes we get a bit nervous and forget something relevant.
Well, since these are your symptoms and this is you appointment, I'd best switch to 'you' :-) This IS a neuro you're seeing, right? And, I hope, one who specializes in MS, or at least has lots of experience with it. I must say that between your MRIs, your LP and the symptoms you describe, MS could well be the answer. Right now the main thing missing is at least one abnormality during a very thorough exam. This means testing strength, reflexes, eye tracking, balance, walking, and so on. Should take about 30 minutes for this part.
Have you already had blood work that might indicate whether an MS mimic could be at work? Lyme, thyroid, vitamin deficiencies, etc. If not, that should be on the agenda too.
Please let us know how all this goes. I'll be watching for your post.
ess
Here's what I'd do---I'd make a timeline which includes these old 'oddities' as well as what's happened recently. I'd do it in bullet form, not speculating about possible causes. I'd include what you've done about the symptoms, even if at one time that was nothing.
I'd keep this very short and sweet, and I'd bring it to the appointment, along with a copy for myself, also the reports of any tests you've had that could be related. Then when the doctor asks why I'm there, I'd give him the paper, hoping he or she would read it. If not, at least it will be in my file. And
that way I'd also have a reference to look at. Sometimes we get a bit nervous and forget something relevant.
Well, since these are your symptoms and this is you appointment, I'd best switch to 'you' :-) This IS a neuro you're seeing, right? And, I hope, one who specializes in MS, or at least has lots of experience with it. I must say that between your MRIs, your LP and the symptoms you describe, MS could well be the answer. Right now the main thing missing is at least one abnormality during a very thorough exam. This means testing strength, reflexes, eye tracking, balance, walking, and so on. Should take about 30 minutes for this part.
Have you already had blood work that might indicate whether an MS mimic could be at work? Lyme, thyroid, vitamin deficiencies, etc. If not, that should be on the agenda too.
Please let us know how all this goes. I'll be watching for your post.
ess
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