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Less chance of LESIONS in progressive MS???
Hi! I'm Dx with Fibromyalgia (only)...at this time. Dr.'s began "suspecting" MS...due to my recent symptoms...4 yrs ago. However, my 1st Brain & C-Spine MRI's were negative...& my Brain MRI...2 yrs ago...had lesions...but were blamed on Migraines/old age/whatever? After reading & answering a topic in another forum board...I JUST rememebered a lady posting...something like a year ago?...where she mentioned (in response to a topic)...that it took like several decades before she was Dx because of the fact that she was NOW in a progressive stage of MS...& the lesions were no longer showing up on her MRI's...because her brain was atrophying. Her Neurologist explained it to her this way. Has anyone else heard anything of this nature??
I can't seem to get ANYWHERE with a Dx! Meanwhile...my body is deteriorating by the year!! I NOW look back...& see where some of my symptoms began decades ago!
For example... I began passing out in hot showers...& becoming ill from overheating...during my early teens! Hence...my early Dx of "borderline hypoglemia!" I was Dx with "Carpal Tunnel" in my right wrist, at the age of 18...blamed on my work...BUT...WAS IT??...as I STILL have occasional problems with my right wrist just going limp! Then...I began having these horrible chest pains (MS HUG??) shortly after I had my 2nd child...was always blamed on "a pulled muscle." Dr. said it would go away in a few days...NOT...more like several months...as always!! Then...in my late 20's...I began having pins-&-needles...with tingling & some numbness in my arms/hands/fingers (right was worst)...THAT was always blamed on TMJ! I also began having these "bug-biting" sensations, about 15 yrs ago. On top of all that...my "Fibro" symptoms (PAIN, flu-like-aching, etc) began in my late 20's as well. Therefore...I am NOW wondering, if ALL these previous episodes COULD have been early stages of MS. I'm certainly NOT self-diagnosing...but my symptoms seem to clearly line-up with MS...more than anything else I've studied, intently, over the past 4 yrs.
Being that my body began "falling apart" in the spring of 2007 & my neurological problems were compounded 10-fold...I'm NOW wondering...COULD I HAVE SLIPPED INTO A PROGRESSIVE STAGE OF MS...THEREBY MAKING IT MORE DIFFICULT TO DIAGNOSE???
My cousin, who has a very progressive MS...is totally convinced that I have it as well...as we've been comparing symptoms for decades! She also has the Fibro...along with the MS...& therefore comprehends the difference in the 2 diseases! As she put it...sometimes they NEVER DO find lesions...or don't find them in the right places (as in my case). Add to this...the fact that I just found out several months ago...that my biological father has a progressive MS (have never met him in person)! Any thoughts??...suggestions??? Thanks for reading all this!
~tj
I can't seem to get ANYWHERE with a Dx! Meanwhile...my body is deteriorating by the year!! I NOW look back...& see where some of my symptoms began decades ago!
For example... I began passing out in hot showers...& becoming ill from overheating...during my early teens! Hence...my early Dx of "borderline hypoglemia!" I was Dx with "Carpal Tunnel" in my right wrist, at the age of 18...blamed on my work...BUT...WAS IT??...as I STILL have occasional problems with my right wrist just going limp! Then...I began having these horrible chest pains (MS HUG??) shortly after I had my 2nd child...was always blamed on "a pulled muscle." Dr. said it would go away in a few days...NOT...more like several months...as always!! Then...in my late 20's...I began having pins-&-needles...with tingling & some numbness in my arms/hands/fingers (right was worst)...THAT was always blamed on TMJ! I also began having these "bug-biting" sensations, about 15 yrs ago. On top of all that...my "Fibro" symptoms (PAIN, flu-like-aching, etc) began in my late 20's as well. Therefore...I am NOW wondering, if ALL these previous episodes COULD have been early stages of MS. I'm certainly NOT self-diagnosing...but my symptoms seem to clearly line-up with MS...more than anything else I've studied, intently, over the past 4 yrs.
Being that my body began "falling apart" in the spring of 2007 & my neurological problems were compounded 10-fold...I'm NOW wondering...COULD I HAVE SLIPPED INTO A PROGRESSIVE STAGE OF MS...THEREBY MAKING IT MORE DIFFICULT TO DIAGNOSE???
My cousin, who has a very progressive MS...is totally convinced that I have it as well...as we've been comparing symptoms for decades! She also has the Fibro...along with the MS...& therefore comprehends the difference in the 2 diseases! As she put it...sometimes they NEVER DO find lesions...or don't find them in the right places (as in my case). Add to this...the fact that I just found out several months ago...that my biological father has a progressive MS (have never met him in person)! Any thoughts??...suggestions??? Thanks for reading all this!
~tj
Hi,
I am another person waiting for the MS diagnosis. I have had symptoms for 10 or more years now. 3 years ago my neurologist said there were changes in my MRI that needed to be followed. THis year my MRI showed 2 small lesions and "severe" brain atrophy in the interhemispheric and parietal lobe area. My symptoms are
extreme intolerence to heat
fatigue
numbness and tingling in lower extremeties
face numbness
altered gait in general imbalance
dizzy ( probably from imbalance)
I am feeling certain that it is MS. I read that the brain atrophy is from older lesions who's nerve endings have died.
Can i ask what you think about this????
Thank you so much
Nancy
I am another person waiting for the MS diagnosis. I have had symptoms for 10 or more years now. 3 years ago my neurologist said there were changes in my MRI that needed to be followed. THis year my MRI showed 2 small lesions and "severe" brain atrophy in the interhemispheric and parietal lobe area. My symptoms are
extreme intolerence to heat
fatigue
numbness and tingling in lower extremeties
face numbness
altered gait in general imbalance
dizzy ( probably from imbalance)
I am feeling certain that it is MS. I read that the brain atrophy is from older lesions who's nerve endings have died.
Can i ask what you think about this????
Thank you so much
Nancy
COMMUNITY LEADER
Morning TJ,
I have to agree that there is SOMETHING wrong, some of your list (which is huge) are unusual for MS, eg actually passing out, Though heat intollerace is obviously associated with MS it is not the only condition eg hypothyroid
What actually happens in SPMS wouldn't be consitent with what I think your saying, to explain you'd first need to have RRMS for a decade or more, all the clinical 'hard' evidence of RRMS (relapsing remitting history, vision evidence, clinical sx of lesions, secondary sx, MRI evidence, VEP etc) but then the RRMS progresses to the point where the pattern of relapsing remitting no longer happens. By the time an MSer gets to SPMS they have obtained perminantly disabiling sx and are continually progressing in a down ward spiral.
SPMS is the second stage of RRMS, SPMS is not similar to PPMS which has a completely different clinical evidence and sx history from the very begining. I think you might of confused what that study is saying, you cant over look the point that all the hard evidence of neurological causation eg clonus, unilateral hyperactive refexes, consistent MS lesions, ON etc etc so the dx of MS has already been well established.
'Active' lesions seen on MRI are basically evidence of new damage thats been caught on MRI prior to scaring, so this paper is just saying that "active plaques likely represent the pathologic basis of clinical relapses in MS" but when RRMS changes to the more progressive stage, the MRI is possibly indicating the transition.
"....there is a predominance of inactive or smoldering plaques that demonstrate a uniform pattern of tissue injury. The study suggests that when the disease is more chronic and progressive in nature, the progression may in part be driven by the accumulation of smoldering plaques in which a low degree of ongoing demyelination is occurring at the plaque edge."
What this is saying is that there may not be any clearly new lesions to account for the patients deterioration but there is MRI evidence of old lesions and some of those old lesions are still actively dymyelinating so the demyelination process is still happening even when there isn't any newly formed lesions and the MRI is showing it.
So getting back to your list of sx, most of your sx fall into the none clinical or commorbid (secondary) sx, yes a lot of these things are often apart of MS but they are not the primary (major) clinical sx. With out primary sx it would be inconsistent with a dx of any type of MS, if you have primary sx they will be evident on testing, eg neuro exam finds clonus etc.
One of the things i didn't see in your posts, was the abnormal test results so what if anything did the tests pick up to show there is neurological damage, clinical evidence? Apart from the 5-6 lesions that could be migraine or age (I dont know your age?) its the location of the lesions that would make MS more likely, eg corpus callum (sp) so where are they?
You've said you have blackholes is that written in your MRI report or anywhere? Why i'm asking is that if you have documentation of that type of damage and documentation of the location of those 5-6 lesions, it could help in determining if whats happening to you is neurological or not. If you do then asking the MS neuro why migraine and not MS would be warrented in my humble opinion, migraine doesn't cause black holes.
In conclusion to my novel (lol) as it stands MS isn't that obvious to me but that could be because i dont have enough facts to go on, sorry!
Cheers..........JJ
I have to agree that there is SOMETHING wrong, some of your list (which is huge) are unusual for MS, eg actually passing out, Though heat intollerace is obviously associated with MS it is not the only condition eg hypothyroid
What actually happens in SPMS wouldn't be consitent with what I think your saying, to explain you'd first need to have RRMS for a decade or more, all the clinical 'hard' evidence of RRMS (relapsing remitting history, vision evidence, clinical sx of lesions, secondary sx, MRI evidence, VEP etc) but then the RRMS progresses to the point where the pattern of relapsing remitting no longer happens. By the time an MSer gets to SPMS they have obtained perminantly disabiling sx and are continually progressing in a down ward spiral.
SPMS is the second stage of RRMS, SPMS is not similar to PPMS which has a completely different clinical evidence and sx history from the very begining. I think you might of confused what that study is saying, you cant over look the point that all the hard evidence of neurological causation eg clonus, unilateral hyperactive refexes, consistent MS lesions, ON etc etc so the dx of MS has already been well established.
'Active' lesions seen on MRI are basically evidence of new damage thats been caught on MRI prior to scaring, so this paper is just saying that "active plaques likely represent the pathologic basis of clinical relapses in MS" but when RRMS changes to the more progressive stage, the MRI is possibly indicating the transition.
"....there is a predominance of inactive or smoldering plaques that demonstrate a uniform pattern of tissue injury. The study suggests that when the disease is more chronic and progressive in nature, the progression may in part be driven by the accumulation of smoldering plaques in which a low degree of ongoing demyelination is occurring at the plaque edge."
What this is saying is that there may not be any clearly new lesions to account for the patients deterioration but there is MRI evidence of old lesions and some of those old lesions are still actively dymyelinating so the demyelination process is still happening even when there isn't any newly formed lesions and the MRI is showing it.
So getting back to your list of sx, most of your sx fall into the none clinical or commorbid (secondary) sx, yes a lot of these things are often apart of MS but they are not the primary (major) clinical sx. With out primary sx it would be inconsistent with a dx of any type of MS, if you have primary sx they will be evident on testing, eg neuro exam finds clonus etc.
One of the things i didn't see in your posts, was the abnormal test results so what if anything did the tests pick up to show there is neurological damage, clinical evidence? Apart from the 5-6 lesions that could be migraine or age (I dont know your age?) its the location of the lesions that would make MS more likely, eg corpus callum (sp) so where are they?
You've said you have blackholes is that written in your MRI report or anywhere? Why i'm asking is that if you have documentation of that type of damage and documentation of the location of those 5-6 lesions, it could help in determining if whats happening to you is neurological or not. If you do then asking the MS neuro why migraine and not MS would be warrented in my humble opinion, migraine doesn't cause black holes.
In conclusion to my novel (lol) as it stands MS isn't that obvious to me but that could be because i dont have enough facts to go on, sorry!
Cheers..........JJ
You know what makes me really mad about the doctors? When someone like you or me are clearly showing some type of neurological problem and they refuse to do an MRI... What's up with that? Sometimes I really think they put things like that off as long as possible so they can have you keep coming back... All about the money I guess... Don't get me wrong, I know not all doctors are like that but we all know of those few that are... We used to roast them on Friday nights... Maybe we should start doing that again... lol
Fibro, If I where you I would start by getting another doctor... Find one that will work with you and not against you... Like I said in my earlier post, do your home work and find out as much as you can about him/her before deciding on one... I went through 6 maybe 7, aww who knows how many but it was a lot, before I found one that actually sit and listened to me and truly acted concerned about me as a person and not my checkbook... He may not have been some genius doctor with an amazing office but I could tell right off the bat he really cared...
I'll be praying,
Carol
Fibro, If I where you I would start by getting another doctor... Find one that will work with you and not against you... Like I said in my earlier post, do your home work and find out as much as you can about him/her before deciding on one... I went through 6 maybe 7, aww who knows how many but it was a lot, before I found one that actually sit and listened to me and truly acted concerned about me as a person and not my checkbook... He may not have been some genius doctor with an amazing office but I could tell right off the bat he really cared...
I'll be praying,
Carol
Well, I join Shell in doubting you have MS. If this offends you, I'm sorry, but this is a forum where we express our opinions based on our own experiences and what we have learned along the way.
The overriding reason for my opinion is your lack of clearly identified lesions. Yes, it's possible to have MS without lesions showing on MRI, and 5% do fit into this category. But I've never heard of anyone going from RRMS to SPMS or PRMS with no lesions found. This is a big difference. And from your description, there is no indication of PPMS. New lesions may not show in the later stages, but for them never to have shown strikes me as being virtually unheard of. If you have research or citations that contradict this, I'd be glad to read them, and will stand corrected.
The longer MS is present, the more likely it is to show its true colors. This means not only MRI lesions, but also clinical 'signs' (readily identifiable by a skilled neurologist). These might include Babinski's, abnormal reflexes, muscle weakness, balance issues, and many more. Such signs are different from symptoms, which are described by the patient but cannot be verified by the doctor. If someone has symptoms but no or inconclusive signs, a diagnosis becomes harder, even if MS is really the cause.
Another avenue for diagnosis, other than lesions seen, are lab tests. Evoked potentials and LP are the main tests that if positive make MS more likely. Other tests are used to rule out the MS mimics, or to determine whether symptoms might be caused by other CNS problems, or possibly peripheral conditions.
I don't know whether you have had comprehensive testing. If you have, and have no MRI lesions, no signs, and no positive tests, MS in any form is highly unlikely, particularly after the passage of many years.
Now as to symptoms---Of course many of those you describe are found in MS, but many are not. For example:
*Fainting from hot showers. It's one thing to be heat intolerant and to experience weakness or other increase in MS symptoms when the core body temperature rises; it's another to faint, especially consistently. I have never read of fainting in these circumstances. Please, though, no more hot showers.
*Feeling faint from standing up sounds like orthostatic hypotension, though I'm no doctor, just an experienced patient. I have not heard of this being an MS symptom.
*Anxiety attacks. The fact of having MS and dealing with its issues has made many MSers anxious, but anxiety itself is not listed as a symptom for diagnostic purposes. Depression can be, though it would be extremely rare for a diagnosis to be made on that basis.
Pain that moves around. Not an MS symptom. Pain in MS always stems ultimately from lesions, whether identified or not, in the CNS. Since lesions do not move, or appear and disappear rapidly, the pain they cause stays in the same places for at least as long as a flare lasts.
*Hypoglycemia. If this is ever caused by MS, it must be extremely rare.
*Sinus, allergy or asthma problems. Not MS.
*Cardiac issues. Only very rarely associated with MS and not at all diagnostic.
All these things and others you've described can be attributable to many causes other than MS, so that's why I'm doubting MS is what's going on with you. I do urge you to see your primary doctor with an eye towards narrowing things down, and to see a neuro for a thorough evaluation. I hope that your mind can soon be set to rest about the possibility of MS, and that if you do not have it, other causes can be found.
ess
The overriding reason for my opinion is your lack of clearly identified lesions. Yes, it's possible to have MS without lesions showing on MRI, and 5% do fit into this category. But I've never heard of anyone going from RRMS to SPMS or PRMS with no lesions found. This is a big difference. And from your description, there is no indication of PPMS. New lesions may not show in the later stages, but for them never to have shown strikes me as being virtually unheard of. If you have research or citations that contradict this, I'd be glad to read them, and will stand corrected.
The longer MS is present, the more likely it is to show its true colors. This means not only MRI lesions, but also clinical 'signs' (readily identifiable by a skilled neurologist). These might include Babinski's, abnormal reflexes, muscle weakness, balance issues, and many more. Such signs are different from symptoms, which are described by the patient but cannot be verified by the doctor. If someone has symptoms but no or inconclusive signs, a diagnosis becomes harder, even if MS is really the cause.
Another avenue for diagnosis, other than lesions seen, are lab tests. Evoked potentials and LP are the main tests that if positive make MS more likely. Other tests are used to rule out the MS mimics, or to determine whether symptoms might be caused by other CNS problems, or possibly peripheral conditions.
I don't know whether you have had comprehensive testing. If you have, and have no MRI lesions, no signs, and no positive tests, MS in any form is highly unlikely, particularly after the passage of many years.
Now as to symptoms---Of course many of those you describe are found in MS, but many are not. For example:
*Fainting from hot showers. It's one thing to be heat intolerant and to experience weakness or other increase in MS symptoms when the core body temperature rises; it's another to faint, especially consistently. I have never read of fainting in these circumstances. Please, though, no more hot showers.
*Feeling faint from standing up sounds like orthostatic hypotension, though I'm no doctor, just an experienced patient. I have not heard of this being an MS symptom.
*Anxiety attacks. The fact of having MS and dealing with its issues has made many MSers anxious, but anxiety itself is not listed as a symptom for diagnostic purposes. Depression can be, though it would be extremely rare for a diagnosis to be made on that basis.
Pain that moves around. Not an MS symptom. Pain in MS always stems ultimately from lesions, whether identified or not, in the CNS. Since lesions do not move, or appear and disappear rapidly, the pain they cause stays in the same places for at least as long as a flare lasts.
*Hypoglycemia. If this is ever caused by MS, it must be extremely rare.
*Sinus, allergy or asthma problems. Not MS.
*Cardiac issues. Only very rarely associated with MS and not at all diagnostic.
All these things and others you've described can be attributable to many causes other than MS, so that's why I'm doubting MS is what's going on with you. I do urge you to see your primary doctor with an eye towards narrowing things down, and to see a neuro for a thorough evaluation. I hope that your mind can soon be set to rest about the possibility of MS, and that if you do not have it, other causes can be found.
ess
No hard feelings at all TJ!! We feel for you and don't want you spinning your wheels.
Why in the heck won't they redo spinal MRI? Or do LP? Do the neuro's not think it's MS? If not, do they think it is all fibro? Can fibro really do all the things you listed on your sx list?
Have you ever had ON? I would be very interested in hearing about what you know about blood test(s). Are you saying there is a new sort of blood test they are using to help in the dx of MS?
Keep posting and letting us know what's going on. Perhaps someone here can offer you something that can help end you continually hitting brick walls.
Hugs right back at ya!
Julie
Why in the heck won't they redo spinal MRI? Or do LP? Do the neuro's not think it's MS? If not, do they think it is all fibro? Can fibro really do all the things you listed on your sx list?
Have you ever had ON? I would be very interested in hearing about what you know about blood test(s). Are you saying there is a new sort of blood test they are using to help in the dx of MS?
Keep posting and letting us know what's going on. Perhaps someone here can offer you something that can help end you continually hitting brick walls.
Hugs right back at ya!
Julie
Thank you Red, Carol, & Julie...for your responses & support. I regret that I've left the impressions that I'm "mad or argumentative"...certainly didn't mean that. I just felt like maybe Shell wasn't comprending what I was trying to relay. Shell...no hard feelings to you either...as I know you were just trying to be helpful also. Just for clarification...I was pondering SPMS...not PPMS. But either way...I know that I need new tests to confirm a Dx...IF it's MS at all.
One of you asked about my previous tests...I had a Brain & C-Spine MRI over 4 yrs ago. Brain was clear...C-Spine had a "suspicious spot" in which the Radiologist suggested rescreening IF my symptoms persisted...which they have. However, NO Neuro has been willing to redo it. I also had a VEP & EMG at that same time...both were clear. This was BEFORE I had the problems in my left eye 2 yrs ago...when I had lost complete center vision for several months.
I had a Neuro to agree to redo my Brain MRI 2 yrs ago...which showed 5-6? (can't remember) lesions...that he felt was from Migraines/old age. I also had black holes than this. So...IDK what that meant? He refused to redo the C-Spine...which I had conveyed to him, was my biggest concern. Neither Neuro would do an LP. So...I'm just at a loss. You are all correct...in that I'm just sooo tired of the "doctor circle-jerk" that seems to get me nowhere! I've just recently heard about a blood test...that they just recently passed for the US. They've been using it for years in other countries. I'm not sure how valid it is...but guess it'd be somewhere to start. Then again...it may not be MS at all. Thanks for everyone's help...no hard feelings here...honest! ((hugs)) ;)
~tj
One of you asked about my previous tests...I had a Brain & C-Spine MRI over 4 yrs ago. Brain was clear...C-Spine had a "suspicious spot" in which the Radiologist suggested rescreening IF my symptoms persisted...which they have. However, NO Neuro has been willing to redo it. I also had a VEP & EMG at that same time...both were clear. This was BEFORE I had the problems in my left eye 2 yrs ago...when I had lost complete center vision for several months.
I had a Neuro to agree to redo my Brain MRI 2 yrs ago...which showed 5-6? (can't remember) lesions...that he felt was from Migraines/old age. I also had black holes than this. So...IDK what that meant? He refused to redo the C-Spine...which I had conveyed to him, was my biggest concern. Neither Neuro would do an LP. So...I'm just at a loss. You are all correct...in that I'm just sooo tired of the "doctor circle-jerk" that seems to get me nowhere! I've just recently heard about a blood test...that they just recently passed for the US. They've been using it for years in other countries. I'm not sure how valid it is...but guess it'd be somewhere to start. Then again...it may not be MS at all. Thanks for everyone's help...no hard feelings here...honest! ((hugs)) ;)
~tj
Hi Fibro, It's so hard to go through this process without any validation of your symptoms. Many of us here have gone through the same thing, test after test----then waiting for appointments. Like Carol, I have PPMS, I have the same problems she listed with cognition, pain etc.
I have heard about 'black holes' and brain shrinking. My understanding is that when there are many lesions, you can start to see some atrophy.
I have lesions and have MRI's often to see the progression.
My suggestion for you is to condense your symptoms and make it much more succint. When doctors see a long list like that they run.
This is a wonderful and supportive community. Allow people here to help you and give you support OK?
Red
I have heard about 'black holes' and brain shrinking. My understanding is that when there are many lesions, you can start to see some atrophy.
I have lesions and have MRI's often to see the progression.
My suggestion for you is to condense your symptoms and make it much more succint. When doctors see a long list like that they run.
This is a wonderful and supportive community. Allow people here to help you and give you support OK?
Red
Julie, I agree with you and Shell...I certainly pray you do not have PPMS which is what I was diagnosed with in 2009... I do know that I no longer have symptoms that come and go at all... Once I get a symptom it's there to stay...Now it may get a little better every once in a while but it never goes away...
As soon as I read things I usually forget it so if I don't get it right please understand... Have you seen an MS specialist? If not then that's what I would suggest... Do your home work and find one that's been around the block a lot... Get as many test as you can although we all know MS is not based on any one test... In fact most Dx's are just the opinion of the doctor... I honestly think a person could go to 5 specialist in 1 day and get 5 different Dx's... Crazy I know...
Like Julie said I also feel a lot of anger in your post... You seem to lash out the minute someone doesn't agree with you... Doctors will listen (sometimes) but then never like being told... I'm speaking from my heart hon and I mean no ill will at all but just breathe...Have your test ran talk calmly with your doctor and let them do their job... If you don't feel like they are doing their job then find another one who will... I do wish you the best and I do pray it's not MS...
I'll be praying,
Carol
As soon as I read things I usually forget it so if I don't get it right please understand... Have you seen an MS specialist? If not then that's what I would suggest... Do your home work and find one that's been around the block a lot... Get as many test as you can although we all know MS is not based on any one test... In fact most Dx's are just the opinion of the doctor... I honestly think a person could go to 5 specialist in 1 day and get 5 different Dx's... Crazy I know...
Like Julie said I also feel a lot of anger in your post... You seem to lash out the minute someone doesn't agree with you... Doctors will listen (sometimes) but then never like being told... I'm speaking from my heart hon and I mean no ill will at all but just breathe...Have your test ran talk calmly with your doctor and let them do their job... If you don't feel like they are doing their job then find another one who will... I do wish you the best and I do pray it's not MS...
I'll be praying,
Carol
Tj,
I am not an expert, far from it. I had the misfortune of getting an MS dx last year after 18+ yrs of symptoms so take what I have to say with that in mind.
From what I do know about MS lesions, the active lesions you are referring to that are seen w/gad are not needed to dx MS. Old lesions are enough to make a dx along with other criteria. No lesions in your MRI's have been seen that are typically present with an MS dx, but typically seen in relation to "old age, migraines, whatever" (your words), and you don't indicate that your brain or spine show signs of atrophy (this definately can been seen on MRI's) that would make older lesions difficult to see.
So, I am not sure how you reached the conclusion that you have possibly slipped into progressive stage of MS. I totally get that you want a dx to explain your sx, I totally get that you are frustrated and I totally get how one or two people can send a person off into connecting dots that may or may not be there.
I don't know what you have. What is your status as far as your dr diagnosing something in addition to your fibro? An LP can help in dx but it not definitive. Have you considered getting one? What other tests have yet to be done?
From my limited experience in this forum, neurologists are loath to hear a patient dx'ing themselves (I know you say your aren't but...) especially when the patient is somewhat argumentative.
I don't mean to offend you, I don't know you, but I can feel your anger and frustration through the computer screen. There seems to be a lot of energy going into this ppms idea, where maybe the engery would be better used talking with a dr? After all, you need a dx from a dr to get treatment regardless of what anyone confirms or doesnt confirm on this forum.
Welcome, by the way, to our forum. I hope you can take what I have said in the spirit in which it was intended.
Julie
I am not an expert, far from it. I had the misfortune of getting an MS dx last year after 18+ yrs of symptoms so take what I have to say with that in mind.
From what I do know about MS lesions, the active lesions you are referring to that are seen w/gad are not needed to dx MS. Old lesions are enough to make a dx along with other criteria. No lesions in your MRI's have been seen that are typically present with an MS dx, but typically seen in relation to "old age, migraines, whatever" (your words), and you don't indicate that your brain or spine show signs of atrophy (this definately can been seen on MRI's) that would make older lesions difficult to see.
So, I am not sure how you reached the conclusion that you have possibly slipped into progressive stage of MS. I totally get that you want a dx to explain your sx, I totally get that you are frustrated and I totally get how one or two people can send a person off into connecting dots that may or may not be there.
I don't know what you have. What is your status as far as your dr diagnosing something in addition to your fibro? An LP can help in dx but it not definitive. Have you considered getting one? What other tests have yet to be done?
From my limited experience in this forum, neurologists are loath to hear a patient dx'ing themselves (I know you say your aren't but...) especially when the patient is somewhat argumentative.
I don't mean to offend you, I don't know you, but I can feel your anger and frustration through the computer screen. There seems to be a lot of energy going into this ppms idea, where maybe the engery would be better used talking with a dr? After all, you need a dx from a dr to get treatment regardless of what anyone confirms or doesnt confirm on this forum.
Welcome, by the way, to our forum. I hope you can take what I have said in the spirit in which it was intended.
Julie
Yes Shell...there is. And I DO understand the difference. The "odd" symptoms that I experienced over the previous decades...did seem to appear in "flares"...however, as the years progressed..."certain symptoms" seemed to hang around more & more often...while yet other symptoms seemed to just disappear (although, they do tend to re-occurr from time-to-time).
Now...I have many symptoms that I deal with on almost a daily basis...especially when over stressed/heated, etc. However, I STILL have periods where I seem to "flare" (exacerbations maybe??)...where old symptoms will become worse...& NEW symptoms will appear. So...this is why I was pondering whether or not I could have "evaded" a Dx earlier in years (since symptoms were being blamed on numerous other things)...& "slipped" into a progressive stage of MS?? I'm just looking for someone who may have experienced this same type of scenario...as I have already spoken with several people Dx with MS...who have (in another forum).
Now...I have many symptoms that I deal with on almost a daily basis...especially when over stressed/heated, etc. However, I STILL have periods where I seem to "flare" (exacerbations maybe??)...where old symptoms will become worse...& NEW symptoms will appear. So...this is why I was pondering whether or not I could have "evaded" a Dx earlier in years (since symptoms were being blamed on numerous other things)...& "slipped" into a progressive stage of MS?? I'm just looking for someone who may have experienced this same type of scenario...as I have already spoken with several people Dx with MS...who have (in another forum).
Hi again,
I'll read your recent soon as I can - but briefly, please don't take my words out of context here.
What I typed in response to your post was they did not sound like "MS attacks" to me. There is a big difference between being symptomatic, and being in an exacerbation/attack...
I'll read your recent soon as I can - but briefly, please don't take my words out of context here.
What I typed in response to your post was they did not sound like "MS attacks" to me. There is a big difference between being symptomatic, and being in an exacerbation/attack...
I appreciate your response Shell. However, I have to disagree with you entirely on the "being intolerant of 'heat'...& the 'carpal tunnel' things...NOT being symptoms of MS! I've had numerous MS Dx'd patients, to admit that they had/have these very same things. In light of all that...I have not even begun to describe the "later" attacks that I've experienced. Maybe you can look over my 'current' symptoms list...& let me know if NONE of these are considered "MS symptoms?"
CURRENT LIST OF SYMPTOMS:
• Numerous paresthesias (numbness, tingling, pins-&-needles, burning, stabbing, bug biting/crawling, itching, vibrating/buzzing, etc…sensations)
• Fluctuating body temps…freezing/shivering one minute…literally sweating the next (constantly swinging back & forth…wake up soak & wet from sweat at night sometimes…this is NOT menopause…as I had Total hysterectomy at age 25)
• Irregular breathing & heart beat patterns; continuous palpitations
• Often feeling faint when I stand up from sitting/laying down…almost blacking out…or actually do on occasions (have done this since a child)
• Passing out/feeling faint after a hot shower/bath (have also done this since childhood)…heat intolerant since adulthood – makes me ill/faint/weak
• Severe Anxiety attacks out of nowhere (no reason for them)…that can last for days on end/keeps me up at nights
• Dx with IBS (& possibly gastroparesis…according to previous testing)
• Bladder/bowel issues (can’t control bladder…or on occasion, bowels)
• Off-&-on spells of severe chest pains (admitted to ER recently as possible heart attack victim…had all signs…chest pain in center, severe nausea, dizziness, & arm numbness for 24 hrs+...although, chest pain & symptoms had been off-&-on for over a month. These spells usually last ~2-3 months)
• PAIN that moves around: flu-like aching, stabbing/electric-shock like pains
• Severe muscle cramps & stiffness…especially in neck/shoulders & legs
• Severe muscle spasms/contractions: have had left side of face to “draw up” several times, & now it seems semi-paralyzed; have severe jaw muscle contractions that lock my jaw/mouth shut
• Muscle weaknesses where sometimes my legs will just go limp…like “noodle legs”…or sometimes I’ll just suddenly drop things, as if my hands/fingers quit working…right-hand wrist sometimes goes limp (although, have had carpel tunnel in right wrist years ago), can hardly open lids anymore
• Vision problems: goes blurry; lost center of vision in left eye for 3 months, 2 yrs ago; repetitive inflammation under left eyelid
• Tremors as of 4 yrs ago (head & right hand…but have had all-over body tremors also…have been having frequent, odd “internal tremors” as of lately)
• Have been Dx as Hypoglycemic as a child…but also have severe hypoglycemic symptoms any time I get hurt (even mildly…such as falling, bumping into things, or smashing a finger) or experience sudden stress/trauma
• Horrible balance/coordination issues: always feel like I’m “falling to the right”…always dropping things, knocking things over, tripping/stumbling over nothing, etc… (was NEVER like this in younger yrs...was very athletic, agile, graceful, & coordinated)
• Cognitive/Memory problems: can no longer remember anything or recall words/names; can’t concentrate or multi-task; have frequent “brain crashes” where my mind completely shuts down for a short duration & I’m completely unaware of surroundings/events till it “comes back online” (people have suggested that maybe I’m having partial/complex seizures?); can’t calculate; etc…(USED TO BE...very bright, sharp, great speller, great memory, top of my class, have a Master's Degree in Speech/Language Pathology!)
• Speech/language problems: stuttering, dyspraxia, dysarthria, dysphasia (all come & go at different times)
• Dysphagia (swallowing problems…food gets backed up into velopharygeal cavity…also have to tuck my chin to swallow...due to insufficient & delayed swallow reflex)
• Severe sinus/allergy/asthma issues (had a sinus surgery 7 years ago…that I have YET to heal from)
• FATIGUE!!
• MIGRAINE Disorder
My MAIN QUESTION is this...
HOW MANY CAN ATTEST/RELATE TO THE FACT...THAT "LESIONS" DO NOT SHOW UP, DURING THE LATE, PROGRESSIVE STAGES OF MS??
THIS is what the article from the Mayo Clinic above...is describing in detail. In fact...several from my other MS forum board...happen to relate & agree with this theory...as they too had a VERY difficult time getting a Dx later on in life...after YEARS of "bizarre" symptoms...constantly being blamed on numerous other things...& NOT getting anywhere with a Dx...until ending up in a wheelchair...or just being completely disabled! I'm quickly getting to this point as of now! Therefore...I'm simply pondering the notion...that JUST MAYBE/POSSIBLY...they have continued to "overlook" the possibility of MS all these past decades (I must admit...I never even considered it back then)...when NOW...that I'm "possibly" in the "late, progressive stages" of MS...they are NOT finding the lesions that they are looking for...because of the reasons listed in this Mayo Clinic article!! I have never had a LP done either. IDK? Just throwing this out there as a possiblity...& was wondering who else may have delt with this same type of scenario!??
CURRENT LIST OF SYMPTOMS:
• Numerous paresthesias (numbness, tingling, pins-&-needles, burning, stabbing, bug biting/crawling, itching, vibrating/buzzing, etc…sensations)
• Fluctuating body temps…freezing/shivering one minute…literally sweating the next (constantly swinging back & forth…wake up soak & wet from sweat at night sometimes…this is NOT menopause…as I had Total hysterectomy at age 25)
• Irregular breathing & heart beat patterns; continuous palpitations
• Often feeling faint when I stand up from sitting/laying down…almost blacking out…or actually do on occasions (have done this since a child)
• Passing out/feeling faint after a hot shower/bath (have also done this since childhood)…heat intolerant since adulthood – makes me ill/faint/weak
• Severe Anxiety attacks out of nowhere (no reason for them)…that can last for days on end/keeps me up at nights
• Dx with IBS (& possibly gastroparesis…according to previous testing)
• Bladder/bowel issues (can’t control bladder…or on occasion, bowels)
• Off-&-on spells of severe chest pains (admitted to ER recently as possible heart attack victim…had all signs…chest pain in center, severe nausea, dizziness, & arm numbness for 24 hrs+...although, chest pain & symptoms had been off-&-on for over a month. These spells usually last ~2-3 months)
• PAIN that moves around: flu-like aching, stabbing/electric-shock like pains
• Severe muscle cramps & stiffness…especially in neck/shoulders & legs
• Severe muscle spasms/contractions: have had left side of face to “draw up” several times, & now it seems semi-paralyzed; have severe jaw muscle contractions that lock my jaw/mouth shut
• Muscle weaknesses where sometimes my legs will just go limp…like “noodle legs”…or sometimes I’ll just suddenly drop things, as if my hands/fingers quit working…right-hand wrist sometimes goes limp (although, have had carpel tunnel in right wrist years ago), can hardly open lids anymore
• Vision problems: goes blurry; lost center of vision in left eye for 3 months, 2 yrs ago; repetitive inflammation under left eyelid
• Tremors as of 4 yrs ago (head & right hand…but have had all-over body tremors also…have been having frequent, odd “internal tremors” as of lately)
• Have been Dx as Hypoglycemic as a child…but also have severe hypoglycemic symptoms any time I get hurt (even mildly…such as falling, bumping into things, or smashing a finger) or experience sudden stress/trauma
• Horrible balance/coordination issues: always feel like I’m “falling to the right”…always dropping things, knocking things over, tripping/stumbling over nothing, etc… (was NEVER like this in younger yrs...was very athletic, agile, graceful, & coordinated)
• Cognitive/Memory problems: can no longer remember anything or recall words/names; can’t concentrate or multi-task; have frequent “brain crashes” where my mind completely shuts down for a short duration & I’m completely unaware of surroundings/events till it “comes back online” (people have suggested that maybe I’m having partial/complex seizures?); can’t calculate; etc…(USED TO BE...very bright, sharp, great speller, great memory, top of my class, have a Master's Degree in Speech/Language Pathology!)
• Speech/language problems: stuttering, dyspraxia, dysarthria, dysphasia (all come & go at different times)
• Dysphagia (swallowing problems…food gets backed up into velopharygeal cavity…also have to tuck my chin to swallow...due to insufficient & delayed swallow reflex)
• Severe sinus/allergy/asthma issues (had a sinus surgery 7 years ago…that I have YET to heal from)
• FATIGUE!!
• MIGRAINE Disorder
My MAIN QUESTION is this...
HOW MANY CAN ATTEST/RELATE TO THE FACT...THAT "LESIONS" DO NOT SHOW UP, DURING THE LATE, PROGRESSIVE STAGES OF MS??
THIS is what the article from the Mayo Clinic above...is describing in detail. In fact...several from my other MS forum board...happen to relate & agree with this theory...as they too had a VERY difficult time getting a Dx later on in life...after YEARS of "bizarre" symptoms...constantly being blamed on numerous other things...& NOT getting anywhere with a Dx...until ending up in a wheelchair...or just being completely disabled! I'm quickly getting to this point as of now! Therefore...I'm simply pondering the notion...that JUST MAYBE/POSSIBLY...they have continued to "overlook" the possibility of MS all these past decades (I must admit...I never even considered it back then)...when NOW...that I'm "possibly" in the "late, progressive stages" of MS...they are NOT finding the lesions that they are looking for...because of the reasons listed in this Mayo Clinic article!! I have never had a LP done either. IDK? Just throwing this out there as a possiblity...& was wondering who else may have delt with this same type of scenario!??
Fibrot,
Hi there. Migraines can absolutely cause brain changes visible by MRI like your neuro described.
The problems you describe with your wrist - passing out in showers and subsequent dx's do not sound like MS attacks to me.
It's very well documented that in late stages, or progressive MS, there are no distinct attacks. In that sense, what's cut and pasted here in the above article is nothing new.
That's why it's not relapsing and remitting at that stage of the disease - it's PPMS.
You ask if we can see what you are seeing, and I can only speak for myself, and I'm not so sure of what you are asking. To guess, if you are asking if you can have a progressive form of MS because of no clear attacks, and clear MRIs, and no clinical evidence or documentation by a qualified physician of the disease - I say the answer is no you can't.
But, I do suggest you tell your treating doctor what's going on because you know your body best, and if you feel you are not being listened to - move on to another doc if you are able.
Sorry you are not feeling well -- hoping others share some thoughts too.
-Shell
Hi there. Migraines can absolutely cause brain changes visible by MRI like your neuro described.
The problems you describe with your wrist - passing out in showers and subsequent dx's do not sound like MS attacks to me.
It's very well documented that in late stages, or progressive MS, there are no distinct attacks. In that sense, what's cut and pasted here in the above article is nothing new.
That's why it's not relapsing and remitting at that stage of the disease - it's PPMS.
You ask if we can see what you are seeing, and I can only speak for myself, and I'm not so sure of what you are asking. To guess, if you are asking if you can have a progressive form of MS because of no clear attacks, and clear MRIs, and no clinical evidence or documentation by a qualified physician of the disease - I say the answer is no you can't.
But, I do suggest you tell your treating doctor what's going on because you know your body best, and if you feel you are not being listened to - move on to another doc if you are able.
Sorry you are not feeling well -- hoping others share some thoughts too.
-Shell
I forgot to add this info...that I just read from an article put out by the Mayo Clinic...
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1817
"A new Mayo Clinic study has found that the type of tissue damage changes throughout the course of multiple sclerosis (MS).
In early relapsing disease stages, the plaques, or areas where the nervous system is inflamed or demyelinated, are predominantly active with distinct heterogeneous patterns of myelin damage. Later in the chronic progressive phase of the disease, smoldering and inactive plaques predominate, and are characterized by a uniform pattern of tissue damage.
Dr. Lucchinetti and a team of Mayo Clinic researchers and collaborators studied tissue from the autopsies of 143 individuals with multiple sclerosis. The tissue was analyzed and 2,479 plaques were classified as active (new lesion in which myelin is being stripped), smoldering (limited degree of ongoing myelin damage in an established plaque), inactive (no evidence for ongoing myelin breakdown) or shadow (evidence of remyelination). The team found that the tissue damage changes over the duration of disease. Early in the disease when relapses are common, numerous active plaques with distinct heterogeneous patterns were readily identified. This study confirms data in previous Mayo Clinic studies that found distinct, heterogeneous patterns in which white matter plaques are formed, and that the pattern is similar among all active plaques in a given patient.
According to Dr. Lucchinetti, these active plaques likely represent the pathologic basis of clinical relapses in MS, and are thought to reflect distinct immune mechanisms of demyelination operating in different subgroups of MS patients. The findings suggest therapies that target MS relapses need to be individualized in order to address the heterogeneity in plaque formation observed early in the disease, however, AS THE DISEASE PROGRESSES, THESE DIVERSE PATTERNS ARE LESS COMMONLY FOUND (emphasis mine), given the rarity of active plaques in later disease stages, she explains.
According to Dr. Lucchinetti, THERE IS A VERY LOW LIKELIHOOD OF HAVING ANY ACTIVE PLAQUES WHEN THE DISEASE IS BEYOND 20 YEARS (emphasis mine). Rather, there is a predominance of inactive or smoldering plaques that demonstrate a uniform pattern of tissue injury. The study suggests that when the disease is more chronic and progressive in nature, the progression may in part be driven by the accumulation of smoldering plaques in which a low degree of ongoing demyelination is occurring at the plaque edge. Since active new MS plaques show up more readily on gadolinium-enhanced MRI, Dr. Lucchinetti says THIS MIGHT EXPLAIN WHY A PATIENT GOES TO THE DOCTOR AND FEELS THAT HIS OR HER DISEASE IS PROGRESSING, BUT AN MRI SHOWS NO NEW LESIONS." (or in my case...didn't go to a specialist...until symptoms became SEVERE...20 yrs later!! Again... the emphasis is mine)
BINGO...I do believe that this describes exactly what I was asking about! Anyone else seeing what I'm seeing here?? Also...has anyone else ever had a Neuro to tell them this?? Thanks.
~tj
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1817
"A new Mayo Clinic study has found that the type of tissue damage changes throughout the course of multiple sclerosis (MS).
In early relapsing disease stages, the plaques, or areas where the nervous system is inflamed or demyelinated, are predominantly active with distinct heterogeneous patterns of myelin damage. Later in the chronic progressive phase of the disease, smoldering and inactive plaques predominate, and are characterized by a uniform pattern of tissue damage.
Dr. Lucchinetti and a team of Mayo Clinic researchers and collaborators studied tissue from the autopsies of 143 individuals with multiple sclerosis. The tissue was analyzed and 2,479 plaques were classified as active (new lesion in which myelin is being stripped), smoldering (limited degree of ongoing myelin damage in an established plaque), inactive (no evidence for ongoing myelin breakdown) or shadow (evidence of remyelination). The team found that the tissue damage changes over the duration of disease. Early in the disease when relapses are common, numerous active plaques with distinct heterogeneous patterns were readily identified. This study confirms data in previous Mayo Clinic studies that found distinct, heterogeneous patterns in which white matter plaques are formed, and that the pattern is similar among all active plaques in a given patient.
According to Dr. Lucchinetti, these active plaques likely represent the pathologic basis of clinical relapses in MS, and are thought to reflect distinct immune mechanisms of demyelination operating in different subgroups of MS patients. The findings suggest therapies that target MS relapses need to be individualized in order to address the heterogeneity in plaque formation observed early in the disease, however, AS THE DISEASE PROGRESSES, THESE DIVERSE PATTERNS ARE LESS COMMONLY FOUND (emphasis mine), given the rarity of active plaques in later disease stages, she explains.
According to Dr. Lucchinetti, THERE IS A VERY LOW LIKELIHOOD OF HAVING ANY ACTIVE PLAQUES WHEN THE DISEASE IS BEYOND 20 YEARS (emphasis mine). Rather, there is a predominance of inactive or smoldering plaques that demonstrate a uniform pattern of tissue injury. The study suggests that when the disease is more chronic and progressive in nature, the progression may in part be driven by the accumulation of smoldering plaques in which a low degree of ongoing demyelination is occurring at the plaque edge. Since active new MS plaques show up more readily on gadolinium-enhanced MRI, Dr. Lucchinetti says THIS MIGHT EXPLAIN WHY A PATIENT GOES TO THE DOCTOR AND FEELS THAT HIS OR HER DISEASE IS PROGRESSING, BUT AN MRI SHOWS NO NEW LESIONS." (or in my case...didn't go to a specialist...until symptoms became SEVERE...20 yrs later!! Again... the emphasis is mine)
BINGO...I do believe that this describes exactly what I was asking about! Anyone else seeing what I'm seeing here?? Also...has anyone else ever had a Neuro to tell them this?? Thanks.
~tj
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