Aa
Rare Cancer and one of the 5 percent without lesion?
Hi All
I am sorry if this is too long. Year 2000 years ago one month of sensory "weird feeling" down right side of body.Felt numb but not Trad numb (if that makes sense), also around that time i awoke on morning with extreme dizziness which the doctor diagnosed as Menieres disease gave me pills and it passed.It would happen only when my head was lying on the right side, eventually both issues passed after month.
Cut too nov 2006 this numbness feeling was back on right side, to doctor again, pills for muscle relaxant etc...no change, never any weakness with this sensation just strange, Eventually sent to Neuro who told me " i cant think it could be anything but MS" !!!! why thank you, very next day she got me MRI on brain and neck. She phoned me 4 days later to "put my mind at rest, all was completely clear", she also got me Visual evoked response.Was also perfect.She then told me we had " ruled out worst thing"....the feeling went away till after christmas....
.
In between had two red lumps removed from back and arm over 2006/2007. Was eventually diagnosed with rare lymphoma of skin..."Cutaneous marginal zone Non hodgkins lymphoma" Could be much worse.stays in skin rarely travels systemicaly.Had all the work up to exclude the cancer from my symptoms..Bone marrow biopsy anyone??? they are great fun..NOT
The feelin on right side returned in feb 2008 (pretty much full time now).The numbness joined by headache which could last two weeks at time,tinnitus, painful neck shoulder, mostly all right sided and floaters in right eye with pain.Bit of tiredness
Had IV antibiotics for three weeks to exclude lymes disease.Still the same
Three weeks ago i was given further MRI w/without contrast on Brain-Returned completely normal.!
Go back to my Infectious disease doctor on 6th october to discuss what next. Really gettin me down a bit now.
Just thinking of the dreadful worry i had with the cancer dont really want to contemplate what this could be although MS is somthin on my mind....BUT...I have had TWO CLEAN MRI's of the BRAIN.(even after increase in symptoms) ...i know we talk about the 5 percent that dont show lesions........But i am lookin upon it as good news. Just wondered what people thought......Sorry its so long.
thankin you
Matt
I am sorry if this is too long. Year 2000 years ago one month of sensory "weird feeling" down right side of body.Felt numb but not Trad numb (if that makes sense), also around that time i awoke on morning with extreme dizziness which the doctor diagnosed as Menieres disease gave me pills and it passed.It would happen only when my head was lying on the right side, eventually both issues passed after month.
Cut too nov 2006 this numbness feeling was back on right side, to doctor again, pills for muscle relaxant etc...no change, never any weakness with this sensation just strange, Eventually sent to Neuro who told me " i cant think it could be anything but MS" !!!! why thank you, very next day she got me MRI on brain and neck. She phoned me 4 days later to "put my mind at rest, all was completely clear", she also got me Visual evoked response.Was also perfect.She then told me we had " ruled out worst thing"....the feeling went away till after christmas....
.
In between had two red lumps removed from back and arm over 2006/2007. Was eventually diagnosed with rare lymphoma of skin..."Cutaneous marginal zone Non hodgkins lymphoma" Could be much worse.stays in skin rarely travels systemicaly.Had all the work up to exclude the cancer from my symptoms..Bone marrow biopsy anyone??? they are great fun..NOT
The feelin on right side returned in feb 2008 (pretty much full time now).The numbness joined by headache which could last two weeks at time,tinnitus, painful neck shoulder, mostly all right sided and floaters in right eye with pain.Bit of tiredness
Had IV antibiotics for three weeks to exclude lymes disease.Still the same
Three weeks ago i was given further MRI w/without contrast on Brain-Returned completely normal.!
Go back to my Infectious disease doctor on 6th october to discuss what next. Really gettin me down a bit now.
Just thinking of the dreadful worry i had with the cancer dont really want to contemplate what this could be although MS is somthin on my mind....BUT...I have had TWO CLEAN MRI's of the BRAIN.(even after increase in symptoms) ...i know we talk about the 5 percent that dont show lesions........But i am lookin upon it as good news. Just wondered what people thought......Sorry its so long.
thankin you
Matt
Thank you so much for posting this. And Welcome to our forum. I am Quix, the local unofficial physician here. I have been a loud voice here maintaining that it IS possible to have MS and not have visible lesions on MRI. I do not think it is common, but all of the studies both on previously diagnosed and on CIS (Clinically Isolated Syndrome) show that about 5% of people with MS do not show classic lesions.
Of course I am not saying that these people do not have lesions in their brains or spinal cords. They have to, or they would not have Multiple Scerosis. But, the MRIs do NOT always show all of the story. There are many types of damage that do not show up early (first several years) in the disease. Eventually, of course, changes will likely show up.
The diagnosis is more dependent on the history of attacks and the finding of abnormalities on the physical exam. It is nice if the MRI shows something, but we have had several people here on the forum who had stories like yous. One went for 10 years without lesions, but with a classically relapsing/remitting course. Another had no lesions for years, but showed first with atrophy (shrinking) of the brain. After that lesions showed up.
I wrote an article on all of the ways you can have MS, but have a negative MRI. It is in the Health Pages (near the upper right corner of this page) and is called "How Can a Person with MS have a Negative MRI?" The main way is that the brain lesions that a person DOES have just do not show up on the MRI machine. The machine may be old or not strong enough or the software may be inadequate. You can copy and paste this into your address bar and read it:
http://www.medhelp.org/health_pages/Multiple+Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
All of the MS Specialists that I respect acknowledge freely that many MS lesions are still invisible to the current MRI machines. Everytime a new more powerful MRI machine is developed it is compared to the older, weaker ones with regard to picking up MS lesions. In every case the stronger machine picks up lesions that were missed by the older ones. Thus, those lesions were invisible if the test was just done on the weaker MRI machines. This happened when they moved form the "less than 1Tesla" machines to the 1.5T machines which are the most common ones in use today in the US. When the newer 3T machines came out, one study showed they picked up 25% more lesions - lesions which were "invisible" to the 1.5T machines.
It happened with me. I had a normal spinal MRI on a 1.5T machine. A month later I had 6 old lesions (older than 6 weeks) on a new 3T machine - 2 in my cervical spine, 2 in the brainstem and 2 in the thoracic spine. My old neurologist denied that I could possibly have MS because I didn't have lesions. The new neurologist looked at the stronger images and said it was obvious.
So, I think it is completely possible for you. I'm glad you have a doc that can think beyond the MRI. MS is not an MRI diagnosis. It showed first be based on the clinical history of attacks and on the neurologic exam of suggestive abnormalities. Then a thorough elimination of the MS Mimics. THEN, and only then the MRI should be examined for lesions and changes consistent with MS (such as atrophy and black holes). Then, supplemental evidence such as the Evoked Responses or the LP can be considered.
Yes, it is very possible (tho uncommon) to have MS and have a negative MRI.
I hope you stay with us!
Quix, MD
Of course I am not saying that these people do not have lesions in their brains or spinal cords. They have to, or they would not have Multiple Scerosis. But, the MRIs do NOT always show all of the story. There are many types of damage that do not show up early (first several years) in the disease. Eventually, of course, changes will likely show up.
The diagnosis is more dependent on the history of attacks and the finding of abnormalities on the physical exam. It is nice if the MRI shows something, but we have had several people here on the forum who had stories like yous. One went for 10 years without lesions, but with a classically relapsing/remitting course. Another had no lesions for years, but showed first with atrophy (shrinking) of the brain. After that lesions showed up.
I wrote an article on all of the ways you can have MS, but have a negative MRI. It is in the Health Pages (near the upper right corner of this page) and is called "How Can a Person with MS have a Negative MRI?" The main way is that the brain lesions that a person DOES have just do not show up on the MRI machine. The machine may be old or not strong enough or the software may be inadequate. You can copy and paste this into your address bar and read it:
http://www.medhelp.org/health_pages/Multiple+Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
All of the MS Specialists that I respect acknowledge freely that many MS lesions are still invisible to the current MRI machines. Everytime a new more powerful MRI machine is developed it is compared to the older, weaker ones with regard to picking up MS lesions. In every case the stronger machine picks up lesions that were missed by the older ones. Thus, those lesions were invisible if the test was just done on the weaker MRI machines. This happened when they moved form the "less than 1Tesla" machines to the 1.5T machines which are the most common ones in use today in the US. When the newer 3T machines came out, one study showed they picked up 25% more lesions - lesions which were "invisible" to the 1.5T machines.
It happened with me. I had a normal spinal MRI on a 1.5T machine. A month later I had 6 old lesions (older than 6 weeks) on a new 3T machine - 2 in my cervical spine, 2 in the brainstem and 2 in the thoracic spine. My old neurologist denied that I could possibly have MS because I didn't have lesions. The new neurologist looked at the stronger images and said it was obvious.
So, I think it is completely possible for you. I'm glad you have a doc that can think beyond the MRI. MS is not an MRI diagnosis. It showed first be based on the clinical history of attacks and on the neurologic exam of suggestive abnormalities. Then a thorough elimination of the MS Mimics. THEN, and only then the MRI should be examined for lesions and changes consistent with MS (such as atrophy and black holes). Then, supplemental evidence such as the Evoked Responses or the LP can be considered.
Yes, it is very possible (tho uncommon) to have MS and have a negative MRI.
I hope you stay with us!
Quix, MD
Hi there!
Wow, Quix did it again, and was very good and thorough. I really don't have much to add except WELCOME to the forum.
I was told that my MRI's were clear but I continued to get worse. When I took those very same MRI's to a different neuro he personally took time to read all the dozens of views and he said that they were abnormal and he didn't agree with the radiologist or old neuro. So keep your mind open! :) (I'm still going through further testing and hope to reach some type of diagnosis soon)
I hope that you stick around and join us! Have a wonderful evening and a blessed Tuesday!
~Sunnytoday~
Wow, Quix did it again, and was very good and thorough. I really don't have much to add except WELCOME to the forum.
I was told that my MRI's were clear but I continued to get worse. When I took those very same MRI's to a different neuro he personally took time to read all the dozens of views and he said that they were abnormal and he didn't agree with the radiologist or old neuro. So keep your mind open! :) (I'm still going through further testing and hope to reach some type of diagnosis soon)
I hope that you stick around and join us! Have a wonderful evening and a blessed Tuesday!
~Sunnytoday~
We have another new member here who was given a dx of MS about 5 years ago but has no lesions. She has been progressively worse, but the new neuros have taken away her diagnosis. This is surely not a disease for the weak or easily intimidated. You got to be strong and follow through with this until you find answers. The clear MRI is good news, but you still know that something is wrong since your symptoms continue to getworse, right?
Until then I hope you will be a regular visitor here,
Lulu
Until then I hope you will be a regular visitor here,
Lulu
Hi there
firstly many thanks for your posts.
I think i was mistaken to post my situation here last night.All i am doing is getting involved with issues outwith my control.
Getting involved in this form of terror orgy serves nobody any good. I know its great to have fellowship with others the same as you but everyone coming round to discuss what we all think it could be, symptoms , feelings etc etc.....To deep into others issues is a poor route to choose.
Thank you for your quick response Quix i do appreciate it.
I know you have a medical background and you have had an issue with lesions not being visable in MRI.This is rare in MS.
So the bottom line is i have an issue going on here, thats for sure. I have had two clean MRI;s w/without contrast 14 months apart on a siemens 1.5T at a large hospital here in scotland. perfect VEP tests. The Chances of me having MS are Greatly greatly reduced on this information.
DOES ANYONE HAVE A FACTUAL BASED ANSWER THAT SUGGESTS OTHERWISE?
And this constant chat "they could have missed it. could have been read wrongly by radiologist or neuro.........."maybe lesions are tooo small" ............ENOUGH ALREADY.
Why should i be one of the apparently 5 percent without lesions? Why could it not be somthing completely different to MS?????
I have never felt dismissed by my doctors or been made to feel like a fraud.I was told to have faith in what i was being told about the tests i was receiving,and continue to have until we come up with or not come up with an name to my problem(s).
Also This "bashing" of the 1.5t compared to the new 3T;s is just not justified.It is used with great success in aiding diagnosis for vast majority of MS patients.
I Have been told its not MS by people who trained for years in chosen fields.Why should i not believe them?I think its best to stick close to those that can give me facts,Hard facts.apposed to the fear based guessing of people on the internet,even those with a medical background that has nothing to do with neurology.
So all this said. I wish everyone well. And hope you het the answers you require Good or Bad.
MATT
firstly many thanks for your posts.
I think i was mistaken to post my situation here last night.All i am doing is getting involved with issues outwith my control.
Getting involved in this form of terror orgy serves nobody any good. I know its great to have fellowship with others the same as you but everyone coming round to discuss what we all think it could be, symptoms , feelings etc etc.....To deep into others issues is a poor route to choose.
Thank you for your quick response Quix i do appreciate it.
I know you have a medical background and you have had an issue with lesions not being visable in MRI.This is rare in MS.
So the bottom line is i have an issue going on here, thats for sure. I have had two clean MRI;s w/without contrast 14 months apart on a siemens 1.5T at a large hospital here in scotland. perfect VEP tests. The Chances of me having MS are Greatly greatly reduced on this information.
DOES ANYONE HAVE A FACTUAL BASED ANSWER THAT SUGGESTS OTHERWISE?
And this constant chat "they could have missed it. could have been read wrongly by radiologist or neuro.........."maybe lesions are tooo small" ............ENOUGH ALREADY.
Why should i be one of the apparently 5 percent without lesions? Why could it not be somthing completely different to MS?????
I have never felt dismissed by my doctors or been made to feel like a fraud.I was told to have faith in what i was being told about the tests i was receiving,and continue to have until we come up with or not come up with an name to my problem(s).
Also This "bashing" of the 1.5t compared to the new 3T;s is just not justified.It is used with great success in aiding diagnosis for vast majority of MS patients.
I Have been told its not MS by people who trained for years in chosen fields.Why should i not believe them?I think its best to stick close to those that can give me facts,Hard facts.apposed to the fear based guessing of people on the internet,even those with a medical background that has nothing to do with neurology.
So all this said. I wish everyone well. And hope you het the answers you require Good or Bad.
MATT
Matt,
I'm Shelly, and I was dx'd last year. There have been errors with my MRIs, however that is not what I've come on to defend or inform you of.
What I have to say is that if it was your intention to come on to our forum to disrupt the good nature, compassion, educational value and friendships we all love and share here, then you should have done so, on your 1st post. So, we didn't waste our time.
We welcome all of our friends here very graciously and without judgement. None of them deserve to be judged as you have done so here.
If I've misread your intentions, or misinterpreted 'terror orgy' then I apologize to all of our members.
Thank you for coming along, and thank you for leaving!
I'm Shelly, and I was dx'd last year. There have been errors with my MRIs, however that is not what I've come on to defend or inform you of.
What I have to say is that if it was your intention to come on to our forum to disrupt the good nature, compassion, educational value and friendships we all love and share here, then you should have done so, on your 1st post. So, we didn't waste our time.
We welcome all of our friends here very graciously and without judgement. None of them deserve to be judged as you have done so here.
If I've misread your intentions, or misinterpreted 'terror orgy' then I apologize to all of our members.
Thank you for coming along, and thank you for leaving!
This is a forum of people who have MS or suspect that. If you think you have something else you're barking up the wrong tree dog!!!
Jon
Jon
I find it quaint to listen to people from the mother country. I harken back to my youth – days of innocence and Brigadoon.
But alas, these days, every day is filled with uncertainties and uneasiness.
In 2001, my troubles began... I woke up one morning with my arms and legs paralyzed, which persisted for 5 days. During the five days in the hospital in a major metropolitan city in the US, in addition to the paralysis, I had tingling, bladder problems, terrible fine motor skills (FMS) especially in my hands, etc... They though initially that I had Guillain-Barre syndrome, but at the end the Neurologist thought it may be a virus. Although, he talked about MS a lot over the three days that I was in the hospital. The found an older lesion on my 3rd thoracic vertabra which he said was not causing the current problem.
Now to 2003, for about a month that summer, I had weak knees, the bottoms of my feet were numb (caused difficulty with walking), electric shock feeling, bladder problems, my skin sometimes felt like there were bugs crawling on it, my banding muscles around my stomach contracted three times so hard that I doubled over like someone had punched me in the stomach, hands were terrible with tingling and loss of FMS. Anyway, none of these things were terrible, but they were troubling in that they were all clustered together like they were.
On to now:
August 18, 2008 FATIGUE!!!! (I slept around the clock the first 7 days) but now I get winded if I walk up stairs, killer constipation, urine retention, lower back/pelvis pain, leg spasms so bad at night that it lifts my body off of the bed (for 5 nights probably 20 a night), muscle twitching, weak knees, the worst FMS in my hands of the 4 "episodes", muscles feel like they are being electrocuted, or sometimes the just vibrate, loss of my peripheral vision for 12 hours, LOCK JAW!, trigeminal nerve pain and pressure, numbness in ear, and some intermittent loss of hearing, intention tremors (knock things over, drop things, hands shake everywhere when I do some FMS task), clicking in my ears, low grade fever for 4 weeks, muscle pains, muscle cramps in calves, toes and balls of feet, burning sensations, degradation of smell and taste, acid reflux, swallowing difficulties (liquid down windpipe), frequent urination (6 to 8 times a night), urinary hesitancy any some pain too, now I have terrible insomnia (i go right to sleep the wake up when I have to go to the bathroom or when my back is tense. All of this even with taking a narcotic muscle relaxer.....
So, upon seeing my MRI of brain, cervical, and thoracic spine, my neuro, having only one old lesion on T3 and several pinpoint hyperintensities in my cerebellum in his quiver fires back a “well, maybe it’s the damage from your initial attack flaring up…”, “well, maybe it’s a reaction to your medicines”, “well, maybe …………. “, blah, blah, blah.
But I said “doc, maybe its caused by gravity, or swirling winds?”, “hey, perhaps by global warming?”, “jump on the bandwagon quick, while you still can!”
Facts
He has no idea what is causing my problem. I wasn’t on ANY medicine from 1962 until late 2005. If it was the medicines in the current episode, how could it be possible that all of my meds attacked me at once? Yeah right.
The FACT is that he can’t tell his posterior from the “Big Dig”; he just wants to check the box – like he’s taking orders at a restaurant.
Now, you kindly skedaddle back over the bridge, your vitriol is not wanted here in our little Brigadoon of a community.
Richard
OperaMBA
But alas, these days, every day is filled with uncertainties and uneasiness.
In 2001, my troubles began... I woke up one morning with my arms and legs paralyzed, which persisted for 5 days. During the five days in the hospital in a major metropolitan city in the US, in addition to the paralysis, I had tingling, bladder problems, terrible fine motor skills (FMS) especially in my hands, etc... They though initially that I had Guillain-Barre syndrome, but at the end the Neurologist thought it may be a virus. Although, he talked about MS a lot over the three days that I was in the hospital. The found an older lesion on my 3rd thoracic vertabra which he said was not causing the current problem.
Now to 2003, for about a month that summer, I had weak knees, the bottoms of my feet were numb (caused difficulty with walking), electric shock feeling, bladder problems, my skin sometimes felt like there were bugs crawling on it, my banding muscles around my stomach contracted three times so hard that I doubled over like someone had punched me in the stomach, hands were terrible with tingling and loss of FMS. Anyway, none of these things were terrible, but they were troubling in that they were all clustered together like they were.
On to now:
August 18, 2008 FATIGUE!!!! (I slept around the clock the first 7 days) but now I get winded if I walk up stairs, killer constipation, urine retention, lower back/pelvis pain, leg spasms so bad at night that it lifts my body off of the bed (for 5 nights probably 20 a night), muscle twitching, weak knees, the worst FMS in my hands of the 4 "episodes", muscles feel like they are being electrocuted, or sometimes the just vibrate, loss of my peripheral vision for 12 hours, LOCK JAW!, trigeminal nerve pain and pressure, numbness in ear, and some intermittent loss of hearing, intention tremors (knock things over, drop things, hands shake everywhere when I do some FMS task), clicking in my ears, low grade fever for 4 weeks, muscle pains, muscle cramps in calves, toes and balls of feet, burning sensations, degradation of smell and taste, acid reflux, swallowing difficulties (liquid down windpipe), frequent urination (6 to 8 times a night), urinary hesitancy any some pain too, now I have terrible insomnia (i go right to sleep the wake up when I have to go to the bathroom or when my back is tense. All of this even with taking a narcotic muscle relaxer.....
So, upon seeing my MRI of brain, cervical, and thoracic spine, my neuro, having only one old lesion on T3 and several pinpoint hyperintensities in my cerebellum in his quiver fires back a “well, maybe it’s the damage from your initial attack flaring up…”, “well, maybe it’s a reaction to your medicines”, “well, maybe …………. “, blah, blah, blah.
But I said “doc, maybe its caused by gravity, or swirling winds?”, “hey, perhaps by global warming?”, “jump on the bandwagon quick, while you still can!”
Facts
He has no idea what is causing my problem. I wasn’t on ANY medicine from 1962 until late 2005. If it was the medicines in the current episode, how could it be possible that all of my meds attacked me at once? Yeah right.
The FACT is that he can’t tell his posterior from the “Big Dig”; he just wants to check the box – like he’s taking orders at a restaurant.
Now, you kindly skedaddle back over the bridge, your vitriol is not wanted here in our little Brigadoon of a community.
Richard
OperaMBA
5% is 1 in 20 is not rare.
The superiority of the higher Tesla machines is documented as I have indicated.
You don't want to have MS, and it is highly likely you don't, as I said. Your situation would be uncommon, but not impossible or rare.
Your tirade is juvenile, but likely based on your own fear. If you don't want to hear "how" the 5% can have a negative MRI and still have MS, then DON'T ASK THE QUESTION.
Certainly, do not attack the messenger nor the good people here who try to help. If you ever choose to speak here again, you will be civil, as people were to you, or you will be deleted and asked to leave.
Quix
The superiority of the higher Tesla machines is documented as I have indicated.
You don't want to have MS, and it is highly likely you don't, as I said. Your situation would be uncommon, but not impossible or rare.
Your tirade is juvenile, but likely based on your own fear. If you don't want to hear "how" the 5% can have a negative MRI and still have MS, then DON'T ASK THE QUESTION.
Certainly, do not attack the messenger nor the good people here who try to help. If you ever choose to speak here again, you will be civil, as people were to you, or you will be deleted and asked to leave.
Quix
Hi There
Sorry if i have offended anyone that was not my intention.Thought someone might have even attempted to answer my question(s) though? But no. Clearly whatever i need to find out, does not reside in this forum.
Again let me apologise for any distress caused.
Good hunting all
Matt
Sorry if i have offended anyone that was not my intention.Thought someone might have even attempted to answer my question(s) though? But no. Clearly whatever i need to find out, does not reside in this forum.
Again let me apologise for any distress caused.
Good hunting all
Matt
Is it just me or did his question get answered? The best it possibly could be anyway.
I have so many questions and they can be answered up to a point but the thing with MS and other neurological conditions is often only time will tell,sometimes years. At times no one not even the experts can find out whats wrong.Its of no comfort but thats how it is.
Matt,its good you apologised but you were a little on the rude side and if you had spent any time on here you would see that Quix actually is quite the expert not just medically but from experience too.You are just not hearing what you want to.Guess what!We all arn't!
Suzie.
I have so many questions and they can be answered up to a point but the thing with MS and other neurological conditions is often only time will tell,sometimes years. At times no one not even the experts can find out whats wrong.Its of no comfort but thats how it is.
Matt,its good you apologised but you were a little on the rude side and if you had spent any time on here you would see that Quix actually is quite the expert not just medically but from experience too.You are just not hearing what you want to.Guess what!We all arn't!
Suzie.
After reading the initial post then Quix's eloquent response I am just about in tears at the response it got.
Quix you do a wonderful job, I have been passing some of your invaluable information re MRIs, LPs and parasthesias (sp?) to a friend of mine who is currently looking for a dx.
I thank you and she thanks you and most (very nearly all) of the people on this forum appreciate you. I'm sorry you got the response that you did.
Mand
Quix you do a wonderful job, I have been passing some of your invaluable information re MRIs, LPs and parasthesias (sp?) to a friend of mine who is currently looking for a dx.
I thank you and she thanks you and most (very nearly all) of the people on this forum appreciate you. I'm sorry you got the response that you did.
Mand
Well, well, well, someone who doesn't appreciate us, huh? Well, from what I can tell his questions were answered and he just wants to try to hurt those who cared enough to respond to his original post.
We have been lucky here, I've been a member for over a year and we've only had a couple of instances of this kind of negativity (?spelling). I think that is a huge statement on who we are, especially when you look around in the real world and see the pessimism, the total lack of caring for others, down right hateful attitudes we encounter everyday, etc., etc.
I, for one, don't know of a more informative, supportive, loving place........I am proud to be a member here and as long as I can see to type, I will be here....no matter what my dx may end up being.
We can't let MJC disrupt our family here, his opinion is less than important. All of us here know who and what we are and what a beautiful and blessed place this is.
So MR MJC FROM GLASCOW, don't come here and bad mouth the good people on here....what did you come here for anyway........there are a few of us on here that would be glad to open up a big can of whoop a** on you, so you go on back to your useless 1.5 T MRI machine and your overly smart/always right drs who never do anything wrong and good luck to ya.
Proud member and friend
MS Forum
We have been lucky here, I've been a member for over a year and we've only had a couple of instances of this kind of negativity (?spelling). I think that is a huge statement on who we are, especially when you look around in the real world and see the pessimism, the total lack of caring for others, down right hateful attitudes we encounter everyday, etc., etc.
I, for one, don't know of a more informative, supportive, loving place........I am proud to be a member here and as long as I can see to type, I will be here....no matter what my dx may end up being.
We can't let MJC disrupt our family here, his opinion is less than important. All of us here know who and what we are and what a beautiful and blessed place this is.
So MR MJC FROM GLASCOW, don't come here and bad mouth the good people on here....what did you come here for anyway........there are a few of us on here that would be glad to open up a big can of whoop a** on you, so you go on back to your useless 1.5 T MRI machine and your overly smart/always right drs who never do anything wrong and good luck to ya.
Proud member and friend
MS Forum
Sorry, you guys, I shouldn't have written that last paragraph...feel really guilty now....sorry.
I personally don't think you have anything to be sorry for honey..you expressed how you felt about this person's tirade and I have to agree. I do feel sorry for someone as scared and closed minded as this fellow is...I hope he finds what he is looking for and doesn't burn all his bridges along the way...burning bridges is a very dangerous thing to do and if he keeps up a tirade such as he did...he will have no bridges left in a very short time. I offer him my deepest sympathy for the fact that he is obviously new to this journey and he may have ruined the opportunity to have a lot of support from myself and my fellow members. I wish him the best of luck and please don't come back if you have nothing positive to offer...we have our plates full with reality...we don't need your soap opera to deal with as well.
Rena
Rena
Matt, your posts alone (content, syntax, mercuriality, disjointedness) suggest that something is wrong with you, neurologically speaking. Continue your pursuit of a diagnosis. I don't think you've caused a ton of distress here--likely more along the lines of bemusement--but you obviously ought to stick with person-to-person interaction with your MDs.
One other thing. You ask "Why should i be one of the apparently 5 percent without lesions? Why could it not be somthing completely different to MS????? " We don't know the answer to that. Fate? Kismet? Karma? Simple biology? Why is anyone in that 5%? Dunno, but thousands of people are. Why would you somehow be especially excluded? And the next time you're in a room with 100 people, note that five of those people represent the 1 in 20 rate. It's a pretty good frequency.
Bio
One other thing. You ask "Why should i be one of the apparently 5 percent without lesions? Why could it not be somthing completely different to MS????? " We don't know the answer to that. Fate? Kismet? Karma? Simple biology? Why is anyone in that 5%? Dunno, but thousands of people are. Why would you somehow be especially excluded? And the next time you're in a room with 100 people, note that five of those people represent the 1 in 20 rate. It's a pretty good frequency.
Bio
MATT,
WELCOME, I'M LATE AS USUAL POSTING.
MS, IS A DX THAT NO ONE WANTS TO PERSUE,ITS A ROLLER COASTER OF HECK WHICH CAUSES MANY TO HAVE EMOTIONAL DEALINGS.
YOU POSTED WHAT YOU FELT AND WHAT YOUR FEELINGS ARE AND MANY HERE DO SO.
I WAS ASK TO POST TO YOU, I WAS IN THAT 5% CATAGORY WITH A DX OF MS WITHOUT LESIONS,HAD ALL THE CLASSIC SYMPTOMS.MRI'S ON A 1.5, CLEAR.BUT THE NEURO STILL TREATED ME FOR MS.
A YEAR LATER I HAD ANOTHER MRI,BRAIN ATROPHY ASSOCIATED AND CONSISTANT WITH MS.
MY NEURO SUSPECTED THAT I HAD MENEIRES, HE SENT ME TO A NEURO-OTOLOGIST, WELL WITH ALL THE TESTING,IT CAME BACK SENSORI-NEURAL HEARING LOSS,MODERATE LEFT EAR,MILD RIGHT. THROUGH THESE TESTING IT CAME BACK WITH AN OCCULAR MOTOR DISORDER , A FORM OF NYSTAGMUS ASSOCIATED WITH MS CALLED ---INO---.AND A LESION NEAR THE BRAIN STEM AND THE LEFT HEMISPERE OF THE BRAIN.
THESE TEST ARE EVOKED POTENTAL AND HELP WHEN MRI'S AREN'T DETECTING DEEP OR MICRO LESIONS.
YET ANOTHER CLEAR MRI , BRAIN ATROPHY, WAS STARTING TO HAVE RIGHT EYE VISUAL PAIN,HAD VEP, THAT WAS NORMAL.
OVER THE LAST FEW YEARS STILL TREATED FOR MS,THE MRI'S WERE CLEAN,
IN DECEMBER MY NEURO SENT ME FOR A NEW MRI A T 1.5, IT SHOWED ONE ACTIVE LESION.
I HAD A REPEATED VEP ALSO, IT CAME BACK WITH OPTICAL NEURITIS IN BOTH EYES,NOT MEANING THAT IT WAS PRESENT IN BOTH EYES,JUST STATING THAT IT WAS THERE IN THE PAST AND BETWEEN VEPS ,THE INFLAMATION HAD DONE IT'S DAMAGE. THE RIGHT EYE CAME BACK AT P130 AND THE LEFT WAS P147.
IN MAY ,MY GENERAL PRACTIONER SENT ME TO A HOSPITAL THAT HAD JUST GOT A T4 MRI MACHINE,I WAS ELIGABLE DO TO A NERVE DISEASE IN MY LUMBER.ON THE T 4 MRI MACHINE IT CAME BACK THAT I HAVE MULTIPLE ENHANCED MICRO LESIONS IN THE BRAIN,C-SPINE AND THORACIC.ALSO IN THE GREY MATTER.
YOU HAVE HAD A LOT TO ENDURE WITH THE SKIN CANCER, MY STEP-MOTHER HAD SKIN CANCER 10 YEARS AGO,THEN IN 2005 SHE HAD DEVELOPED CANCER IN HER LYMPHNODES, IT WAS EXTREMELY ROUGH TO SEE WHAT SHE HAD ENDURED.
SHE HAS DEVELOPED DROP FOOT AND SO FORTH,SHE HAS SOME SENSORI ISSUES,IT COULD ALL BE A FACTOR TO THE CHEMO, RADIATION AND WHAT ELSE THEY TREATED HER WITH.
YOU DEFINATELY HAVE GREAT FAITH IN YOUR DRS. THATS AWESOME,YOUR DRS.SEEM TO WORK AS A TEAM.MANY PATIENTS HERE DON'T HAVE THAT.
MATT, MS , IS NOT THE END OF THE WORLD, TODAY THE DISEASE MODIFYING MEDS ARE A GREAT HELP SLOWING THE PROGRESSION.
PLEASE DON'T BE ANGRY WITH OUR FORUM GROUP HERE, MANY GET FRUSTRATED, YEARS OF SYMPTOMS AND NO ANSWERS.
HERE, WE ADVISE OF WHATS AVAILABLE, MRI WISE, MEDICINES AND SO FORTH.
WE ARE NOT HERE TO BASH THE MRI IMAGING,MANY LESIONS ARE FOUND ON A 1.5, MANY IT TOOK A T3. BUT I WAS IN THAT CATAGORY OF THAT 5 % UNTIL THE T4 .
IT'S BEEN PROVEN STASTICALLY THAT MANY MRI'S ARE MISREAD, BUT THESE RADIOLOGIST ARE HUMAN,SO ENTITLED TO ERRORS.
HERE WE HAVE ARE SERIOUS DOWN SIDES AND FRUSTRATIONS WITH DRS. BEING DISMISSIVE,YOU VERY FORTUNATE THAT YOURS HASN'T.
WE ALSO HAVE BECOME A HUGE CYBER FAMILY, WE ANSWER QUESTIONS TO OUR OWN EXPERIENCE,WE LAUGH. IT'S JUST NOT ALL SERIOUS.
YOU CAME HERE AND ASK QUESTIONS, YOU HAVE BEEN GIVEN GREAT MEDICAL STATISTICAL ADVICE AND STORIES OF WHAT OTHERS HAVE WENT THROUGH TO FIND THE ETOLOGY OF THERE NEUROLOGICAL ISSUES.
SOME OF OUR FORUM MEMBERS,WHOM ONCE THOUGHT IT WAS MS,BUT HAVE BEEN DIAGNOSED WITH ANOTHER NEURO DISORDER,THEY HAVE STAYED WITH US AND HAVE HELPED MANY.
ONLY YOUR DRS. CAN TRUELLY DX YOU,THE EARLIER THE TREATMENT THE GREATER THE OUT COME IN THE LONG RUN.
MANY HERE WITH MS WORK,HAVE CHILDREN AND LIVE VERY FULLFILLING LIVES.
SOME HERE WITH MS HAVE OTHER DISORDERS INCLUDED, AS FOR ME I HAVE MS (IT DON'T HAVE ME) I ALSO HAVE AN INCURABLE SPINAL NERVE DISEASE, CALLED BILATERALLY CHRONIC ADHEASIVE ARACHNOIDITIS.THE SPANS THROUGH THE 5 LUMBERS AND THE S1 OF THE SACRUM.
MATT, YOU ASK IF ANYONE HAD ANY FACTUAL BASIS'S ON YOU BEING THAT 5 %, WE CAN'T ANSWER THAT, WE CAN ONLY TELL WHAT WE WENT THROUGH.
I CAN TELL YOU I FELL IN THAT 5 PERCENT AND AS TECHNOLOGY HAS GOTTEN BETTER , I FELL OUT OF THAT FIVE PERCENT.
DRS. ARE NOW JUST ADMITTING AND DIAGNOSING MS WITH PEOPLE THAT HAVE GREY MATTER LESSIONS.
YOU MAY OR MAY NOT HAVE MS, WITH THE NEUROLOGICAL SYMPTOMS YOUR EXPERIENCING I HOPE YOU FOLLOW-UP WITH IT,YOUR DRS. ARE TELLING YOU TO HAVE FAITH AND THEY SEEM TO BE DOING THE PROPER TESTING.
MATT, THIS FORUM HAS HELPED MANY OF US GET THROUGH SOME ROUGH POINTS,NOT JUST MS.
YOU SEEMED TO BE QUITE ADGITATED WITH OUR FORUM MEMBERS AND THEIR RESPONSES,WE AREN'T DRS.JUST A GROUP THAT CAN SHARE WITH EACH OTHER.
DON'T BE DISMISSIVE , WE WILL HELP YOU THROUGH THIS PROCESS, REMEMBER YOUR NOT ALONE IN SEEKING AN ANSWER TO WHY THE NEUROLOGICAL ISSUES.
NOW YOU SEE ITS POSSIBLE TO BE IN THAT 5 %.
WISHING YOU THE BEST OF LUCK IN SEEKING YOUR DIAGNOSIS.
T-LYNN
WELCOME, I'M LATE AS USUAL POSTING.
MS, IS A DX THAT NO ONE WANTS TO PERSUE,ITS A ROLLER COASTER OF HECK WHICH CAUSES MANY TO HAVE EMOTIONAL DEALINGS.
YOU POSTED WHAT YOU FELT AND WHAT YOUR FEELINGS ARE AND MANY HERE DO SO.
I WAS ASK TO POST TO YOU, I WAS IN THAT 5% CATAGORY WITH A DX OF MS WITHOUT LESIONS,HAD ALL THE CLASSIC SYMPTOMS.MRI'S ON A 1.5, CLEAR.BUT THE NEURO STILL TREATED ME FOR MS.
A YEAR LATER I HAD ANOTHER MRI,BRAIN ATROPHY ASSOCIATED AND CONSISTANT WITH MS.
MY NEURO SUSPECTED THAT I HAD MENEIRES, HE SENT ME TO A NEURO-OTOLOGIST, WELL WITH ALL THE TESTING,IT CAME BACK SENSORI-NEURAL HEARING LOSS,MODERATE LEFT EAR,MILD RIGHT. THROUGH THESE TESTING IT CAME BACK WITH AN OCCULAR MOTOR DISORDER , A FORM OF NYSTAGMUS ASSOCIATED WITH MS CALLED ---INO---.AND A LESION NEAR THE BRAIN STEM AND THE LEFT HEMISPERE OF THE BRAIN.
THESE TEST ARE EVOKED POTENTAL AND HELP WHEN MRI'S AREN'T DETECTING DEEP OR MICRO LESIONS.
YET ANOTHER CLEAR MRI , BRAIN ATROPHY, WAS STARTING TO HAVE RIGHT EYE VISUAL PAIN,HAD VEP, THAT WAS NORMAL.
OVER THE LAST FEW YEARS STILL TREATED FOR MS,THE MRI'S WERE CLEAN,
IN DECEMBER MY NEURO SENT ME FOR A NEW MRI A T 1.5, IT SHOWED ONE ACTIVE LESION.
I HAD A REPEATED VEP ALSO, IT CAME BACK WITH OPTICAL NEURITIS IN BOTH EYES,NOT MEANING THAT IT WAS PRESENT IN BOTH EYES,JUST STATING THAT IT WAS THERE IN THE PAST AND BETWEEN VEPS ,THE INFLAMATION HAD DONE IT'S DAMAGE. THE RIGHT EYE CAME BACK AT P130 AND THE LEFT WAS P147.
IN MAY ,MY GENERAL PRACTIONER SENT ME TO A HOSPITAL THAT HAD JUST GOT A T4 MRI MACHINE,I WAS ELIGABLE DO TO A NERVE DISEASE IN MY LUMBER.ON THE T 4 MRI MACHINE IT CAME BACK THAT I HAVE MULTIPLE ENHANCED MICRO LESIONS IN THE BRAIN,C-SPINE AND THORACIC.ALSO IN THE GREY MATTER.
YOU HAVE HAD A LOT TO ENDURE WITH THE SKIN CANCER, MY STEP-MOTHER HAD SKIN CANCER 10 YEARS AGO,THEN IN 2005 SHE HAD DEVELOPED CANCER IN HER LYMPHNODES, IT WAS EXTREMELY ROUGH TO SEE WHAT SHE HAD ENDURED.
SHE HAS DEVELOPED DROP FOOT AND SO FORTH,SHE HAS SOME SENSORI ISSUES,IT COULD ALL BE A FACTOR TO THE CHEMO, RADIATION AND WHAT ELSE THEY TREATED HER WITH.
YOU DEFINATELY HAVE GREAT FAITH IN YOUR DRS. THATS AWESOME,YOUR DRS.SEEM TO WORK AS A TEAM.MANY PATIENTS HERE DON'T HAVE THAT.
MATT, MS , IS NOT THE END OF THE WORLD, TODAY THE DISEASE MODIFYING MEDS ARE A GREAT HELP SLOWING THE PROGRESSION.
PLEASE DON'T BE ANGRY WITH OUR FORUM GROUP HERE, MANY GET FRUSTRATED, YEARS OF SYMPTOMS AND NO ANSWERS.
HERE, WE ADVISE OF WHATS AVAILABLE, MRI WISE, MEDICINES AND SO FORTH.
WE ARE NOT HERE TO BASH THE MRI IMAGING,MANY LESIONS ARE FOUND ON A 1.5, MANY IT TOOK A T3. BUT I WAS IN THAT CATAGORY OF THAT 5 % UNTIL THE T4 .
IT'S BEEN PROVEN STASTICALLY THAT MANY MRI'S ARE MISREAD, BUT THESE RADIOLOGIST ARE HUMAN,SO ENTITLED TO ERRORS.
HERE WE HAVE ARE SERIOUS DOWN SIDES AND FRUSTRATIONS WITH DRS. BEING DISMISSIVE,YOU VERY FORTUNATE THAT YOURS HASN'T.
WE ALSO HAVE BECOME A HUGE CYBER FAMILY, WE ANSWER QUESTIONS TO OUR OWN EXPERIENCE,WE LAUGH. IT'S JUST NOT ALL SERIOUS.
YOU CAME HERE AND ASK QUESTIONS, YOU HAVE BEEN GIVEN GREAT MEDICAL STATISTICAL ADVICE AND STORIES OF WHAT OTHERS HAVE WENT THROUGH TO FIND THE ETOLOGY OF THERE NEUROLOGICAL ISSUES.
SOME OF OUR FORUM MEMBERS,WHOM ONCE THOUGHT IT WAS MS,BUT HAVE BEEN DIAGNOSED WITH ANOTHER NEURO DISORDER,THEY HAVE STAYED WITH US AND HAVE HELPED MANY.
ONLY YOUR DRS. CAN TRUELLY DX YOU,THE EARLIER THE TREATMENT THE GREATER THE OUT COME IN THE LONG RUN.
MANY HERE WITH MS WORK,HAVE CHILDREN AND LIVE VERY FULLFILLING LIVES.
SOME HERE WITH MS HAVE OTHER DISORDERS INCLUDED, AS FOR ME I HAVE MS (IT DON'T HAVE ME) I ALSO HAVE AN INCURABLE SPINAL NERVE DISEASE, CALLED BILATERALLY CHRONIC ADHEASIVE ARACHNOIDITIS.THE SPANS THROUGH THE 5 LUMBERS AND THE S1 OF THE SACRUM.
MATT, YOU ASK IF ANYONE HAD ANY FACTUAL BASIS'S ON YOU BEING THAT 5 %, WE CAN'T ANSWER THAT, WE CAN ONLY TELL WHAT WE WENT THROUGH.
I CAN TELL YOU I FELL IN THAT 5 PERCENT AND AS TECHNOLOGY HAS GOTTEN BETTER , I FELL OUT OF THAT FIVE PERCENT.
DRS. ARE NOW JUST ADMITTING AND DIAGNOSING MS WITH PEOPLE THAT HAVE GREY MATTER LESSIONS.
YOU MAY OR MAY NOT HAVE MS, WITH THE NEUROLOGICAL SYMPTOMS YOUR EXPERIENCING I HOPE YOU FOLLOW-UP WITH IT,YOUR DRS. ARE TELLING YOU TO HAVE FAITH AND THEY SEEM TO BE DOING THE PROPER TESTING.
MATT, THIS FORUM HAS HELPED MANY OF US GET THROUGH SOME ROUGH POINTS,NOT JUST MS.
YOU SEEMED TO BE QUITE ADGITATED WITH OUR FORUM MEMBERS AND THEIR RESPONSES,WE AREN'T DRS.JUST A GROUP THAT CAN SHARE WITH EACH OTHER.
DON'T BE DISMISSIVE , WE WILL HELP YOU THROUGH THIS PROCESS, REMEMBER YOUR NOT ALONE IN SEEKING AN ANSWER TO WHY THE NEUROLOGICAL ISSUES.
NOW YOU SEE ITS POSSIBLE TO BE IN THAT 5 %.
WISHING YOU THE BEST OF LUCK IN SEEKING YOUR DIAGNOSIS.
T-LYNN
Right ok
thats plenty thank you. I apologised. I know there is enough fear here without my contribution. Soo once more. I am sorry.
Matt
thats plenty thank you. I apologised. I know there is enough fear here without my contribution. Soo once more. I am sorry.
Matt
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
