Aa
Maria -My story - in a nutshell
hey everyone
Maria had asked if i could give some background on what has been going on with me..here it goes:
In November 2002 I saw my dad's doc because i would get headaches off and on and my dad had an anurysm..so he wanted me to get checked
MRI showed several nonspecific T2 bright foci in supratentorial white matter. Could be seen with migrine, ischemic and demylinating disease.
Conclusions: no anurysms. non-specific supratentorial white matter abnormalities.
In September 2006 I went to urgent care due to pins and needles in left arm.
Conclusion: slight straightening of cervical spine, othrwise normal exam.
In November 2006 I started seeing a neurologist after a referral from PCP. I had a massive headache with vomitting - thought I was having anurysym.
MRI done with out contrast: Multiple small few milileter foi of T2 and inversion recovery hyperintensities in both cerebral hemispheres consistant with demyeliation/nonspecific gliosis. MS would be in differential.
Conclusion: No anurysym. Mild demyelination/nonspecific gliosis in both cerebral hemispheres.
I was put on migraine med of Topomax and abortive med amerge....My Migraines were always under control
June 2009 began having blurred vision and pain in left eye, pins and needles in left arm again and problems with thinking and finding words..
MRI without contrast:
There are numerous, approximately 20 foci of T2 and FLAIR hyperintensity present within supratentorial white matter, most predominatly with in centrum semiovale and high convexity subcortical white matter.
Conclusion: Numerous supratentorial white matter T2 and FLAIR hyperintense Foci, possibly representing demyelination process, CNS vaculitis, Lyme, Small vessel ischmic or numeros other etiologies. Distribution somewhat atypical for multiple sclerosis.
EMG done on arm: results normal
Eye Exm: perfect vision
Suffered from parethesia, fatigue, trouble finding words, pain in arm for few months.
December 2009 Repeat MRI without contrast
Multiple scattered areas of increased FLAIR and T2 signal throughout subcortical white matter of both frontal-parietal lobes and increased peritrigonal white matter signal abnormality, unchanged in size, distribution and number.
Conclusion: stable nonspecific supratentorial WM signal abnormality. Differentail considerations in clude migraine, small vessel ischmic, demylenation, Lyme, or gliosis from other etiology.
Migraine Meds were stopped
In July 2010 I had problems with legs..burning sensations up my legs and could hardly walk. massive fatigue..(I contributed this to heat wave we had as when the weathr cooled off I felt better.
Sept 2010
Doc ran blood work for EVERYTHING : all normal
told him I was feeling neauseated from time to time with and without headache ad he said to take migraine med wether I have headache or not...did not work..
October 2010 - vision started to get blurry and pain in eye - went to opthomologist and had filed vision testing - all within normal limits.
Comments made were droopy eyelid and different pupil sizes.
November 2010 - neasuea has been constant for last moth with no help of pills....he said no tests needed..put me back on migraine med Topomax...
That's where I am in a nutshell. Please note I have never been shown or explained my MRI's by my neuro..I have these only by requesting them at MRI facility..He has never spoken a word to me about anything they mean or don't mean
Jibs
Maria had asked if i could give some background on what has been going on with me..here it goes:
In November 2002 I saw my dad's doc because i would get headaches off and on and my dad had an anurysm..so he wanted me to get checked
MRI showed several nonspecific T2 bright foci in supratentorial white matter. Could be seen with migrine, ischemic and demylinating disease.
Conclusions: no anurysms. non-specific supratentorial white matter abnormalities.
In September 2006 I went to urgent care due to pins and needles in left arm.
Conclusion: slight straightening of cervical spine, othrwise normal exam.
In November 2006 I started seeing a neurologist after a referral from PCP. I had a massive headache with vomitting - thought I was having anurysym.
MRI done with out contrast: Multiple small few milileter foi of T2 and inversion recovery hyperintensities in both cerebral hemispheres consistant with demyeliation/nonspecific gliosis. MS would be in differential.
Conclusion: No anurysym. Mild demyelination/nonspecific gliosis in both cerebral hemispheres.
I was put on migraine med of Topomax and abortive med amerge....My Migraines were always under control
June 2009 began having blurred vision and pain in left eye, pins and needles in left arm again and problems with thinking and finding words..
MRI without contrast:
There are numerous, approximately 20 foci of T2 and FLAIR hyperintensity present within supratentorial white matter, most predominatly with in centrum semiovale and high convexity subcortical white matter.
Conclusion: Numerous supratentorial white matter T2 and FLAIR hyperintense Foci, possibly representing demyelination process, CNS vaculitis, Lyme, Small vessel ischmic or numeros other etiologies. Distribution somewhat atypical for multiple sclerosis.
EMG done on arm: results normal
Eye Exm: perfect vision
Suffered from parethesia, fatigue, trouble finding words, pain in arm for few months.
December 2009 Repeat MRI without contrast
Multiple scattered areas of increased FLAIR and T2 signal throughout subcortical white matter of both frontal-parietal lobes and increased peritrigonal white matter signal abnormality, unchanged in size, distribution and number.
Conclusion: stable nonspecific supratentorial WM signal abnormality. Differentail considerations in clude migraine, small vessel ischmic, demylenation, Lyme, or gliosis from other etiology.
Migraine Meds were stopped
In July 2010 I had problems with legs..burning sensations up my legs and could hardly walk. massive fatigue..(I contributed this to heat wave we had as when the weathr cooled off I felt better.
Sept 2010
Doc ran blood work for EVERYTHING : all normal
told him I was feeling neauseated from time to time with and without headache ad he said to take migraine med wether I have headache or not...did not work..
October 2010 - vision started to get blurry and pain in eye - went to opthomologist and had filed vision testing - all within normal limits.
Comments made were droopy eyelid and different pupil sizes.
November 2010 - neasuea has been constant for last moth with no help of pills....he said no tests needed..put me back on migraine med Topomax...
That's where I am in a nutshell. Please note I have never been shown or explained my MRI's by my neuro..I have these only by requesting them at MRI facility..He has never spoken a word to me about anything they mean or don't mean
Jibs
I just want to tell you that if you didn't get answers from your neurologist that you can have your family doctor explain it to you. They to want to know everything that is going on with you.
I just got an MRI and the doctor told me everything looks normal except you have a sinus disease. He then sent me to an EN&T doctor. This doctor couldn't believe that I wasn't put on medication right away, I now have the results and I will give them to you and you tell me if there are some similarities.
1. No MR abnormality at either internal auditory canals, cerebellopontine cisterns, or labyrinthine structures bilaterally.
2. Minimal nonspecific supratentorial white matter T2 hyperintense foci likely to reflect gliosis from a remote vascular or inflammatory process. Appearance is not suggestive for demyelination.
3. Left sphenoid sinus disease with air fluid level, which could reflect acuity of inflammation.
4. Incidental right anterior frontal venous angioma without cavernous malformation, clinically insignificant.
So these are the results of my MRI some are simular to yours like number 2 and I was told that it was nothing but when I read the results I didn't get to hear about that number 2 or anything about it.
So I really don't know if it's anything to worry about. Let me know if you find out more, good luck hun!
HUGS to everyone who reads this!
Xx ApllfAn xx
I just got an MRI and the doctor told me everything looks normal except you have a sinus disease. He then sent me to an EN&T doctor. This doctor couldn't believe that I wasn't put on medication right away, I now have the results and I will give them to you and you tell me if there are some similarities.
1. No MR abnormality at either internal auditory canals, cerebellopontine cisterns, or labyrinthine structures bilaterally.
2. Minimal nonspecific supratentorial white matter T2 hyperintense foci likely to reflect gliosis from a remote vascular or inflammatory process. Appearance is not suggestive for demyelination.
3. Left sphenoid sinus disease with air fluid level, which could reflect acuity of inflammation.
4. Incidental right anterior frontal venous angioma without cavernous malformation, clinically insignificant.
So these are the results of my MRI some are simular to yours like number 2 and I was told that it was nothing but when I read the results I didn't get to hear about that number 2 or anything about it.
So I really don't know if it's anything to worry about. Let me know if you find out more, good luck hun!
HUGS to everyone who reads this!
Xx ApllfAn xx
Oh (((Jibjen))), read your timeline and could just cry for you.
Why can't the neurologists/doctors/specialists all just get together and thrash these symptoms out and come up with a final diagnosis - not just for you, but for everyone who's reached this point in their treatment?
These guys have been highly trained and are well paid to do the job their being paid to do, so why can't they sort this sort of thing out, name the problem and then come up with a course of treatment that they're going to follow in order to try and slow things down... or just darn well alleviate some of these symptoms.
I know about the burning skin .. I get that too, along with the total debilitating pain in the left arm, which when it first started to happen, many years ago, I was convinced that I must be about to have a heart attack because the pain and heavy feeling in the whole arm was so bad that it made me cry hot tears and beg for help.
I used to ask my eldest daughter (then 14 years old) to "pull the pain out of my arm" - which meant a kind of physiotherapy where she some how could hand over hand use the right pressure to 'pull' down my arm from the top by the shoulder, all the way to the wrist and hand - which, for some reason, helped with the pain.
Only she seemed to have the right technique to be able to ease that pain. No one else could do it.
Why the heck are we all treated so poorly? Why can't these folks who are supposed to be trained to do the job they're doing, actually come up with an answer for us?
Jib.. I hope they help you soon. I hope they can come up with something concrete and make a decision on how to treat you so that things will improve in some way.
I'm sorry to the heart of me to know of your suffering. l'm with you, Jib. Heart, thought and prayer. ~ Me. xxx
Why can't the neurologists/doctors/specialists all just get together and thrash these symptoms out and come up with a final diagnosis - not just for you, but for everyone who's reached this point in their treatment?
These guys have been highly trained and are well paid to do the job their being paid to do, so why can't they sort this sort of thing out, name the problem and then come up with a course of treatment that they're going to follow in order to try and slow things down... or just darn well alleviate some of these symptoms.
I know about the burning skin .. I get that too, along with the total debilitating pain in the left arm, which when it first started to happen, many years ago, I was convinced that I must be about to have a heart attack because the pain and heavy feeling in the whole arm was so bad that it made me cry hot tears and beg for help.
I used to ask my eldest daughter (then 14 years old) to "pull the pain out of my arm" - which meant a kind of physiotherapy where she some how could hand over hand use the right pressure to 'pull' down my arm from the top by the shoulder, all the way to the wrist and hand - which, for some reason, helped with the pain.
Only she seemed to have the right technique to be able to ease that pain. No one else could do it.
Why the heck are we all treated so poorly? Why can't these folks who are supposed to be trained to do the job they're doing, actually come up with an answer for us?
Jib.. I hope they help you soon. I hope they can come up with something concrete and make a decision on how to treat you so that things will improve in some way.
I'm sorry to the heart of me to know of your suffering. l'm with you, Jib. Heart, thought and prayer. ~ Me. xxx
Hi helen the problem with ME/CFS and fibroymyalgia and MS is they are SO similar that some neuros are now wondering if they are part and parcel of the same disease.
I read somewhere of a research (cant find it now it was on my old computer) and a specialist believes ME is actually a benign form of the MS..... pre demylination.
And I dont know if you realise but although they reckon it affects the way the heart works with exercise that The World Health Organisation has classed it a s a neurological disorder.
My daughter was diagnosed with ME. Her illness runs differently from mine. The burning in MS is called parasthesias. My daughters legs burn when she has been walking. Although I havent been diagnosed I get the burning even in rest it drives me nuts sometimes is so bad it makes me what to cry out.
Her fatigue is different too, when she has it she is in bed all day. I can get up in the morning but come 3pm my energy levels fall off the radar lol.
Even people diagnosed with MS cant tolerate exercise.
Its a nightmare truly to diagnose anything.
My daughter was sent to the big ME clinic in Bristol and they told her they didnt think she had M.E. but sent her back to her neurologist and they think she has MS. The neuro said no.......so where do you go from there. She did have stuff on her MRI and her lumber puncture but it was all dismissed.
How are you coping with your ME. I have several friends with this and you really couldn't tell the difference between them and a friend with MS.
Big hugs maria
I read somewhere of a research (cant find it now it was on my old computer) and a specialist believes ME is actually a benign form of the MS..... pre demylination.
And I dont know if you realise but although they reckon it affects the way the heart works with exercise that The World Health Organisation has classed it a s a neurological disorder.
My daughter was diagnosed with ME. Her illness runs differently from mine. The burning in MS is called parasthesias. My daughters legs burn when she has been walking. Although I havent been diagnosed I get the burning even in rest it drives me nuts sometimes is so bad it makes me what to cry out.
Her fatigue is different too, when she has it she is in bed all day. I can get up in the morning but come 3pm my energy levels fall off the radar lol.
Even people diagnosed with MS cant tolerate exercise.
Its a nightmare truly to diagnose anything.
My daughter was sent to the big ME clinic in Bristol and they told her they didnt think she had M.E. but sent her back to her neurologist and they think she has MS. The neuro said no.......so where do you go from there. She did have stuff on her MRI and her lumber puncture but it was all dismissed.
How are you coping with your ME. I have several friends with this and you really couldn't tell the difference between them and a friend with MS.
Big hugs maria
This is just a random thought, but a lot of your history sounds so familiar. I too have numerous hyperintensities, and have been suffering from burning legs, debilitating exhaustion, poor sleep and cognitive problems for over a year.
I was convinced it was MS, but I was wrong. It was ME/CFS. For me it turns out the burning was because my body builds up lactic acid. Do you have any difficulty with exercise, like a day or 2 later? I thought I would throw it out there in case it fits for you.
I was convinced it was MS, but I was wrong. It was ME/CFS. For me it turns out the burning was because my body builds up lactic acid. Do you have any difficulty with exercise, like a day or 2 later? I thought I would throw it out there in case it fits for you.
Thanks toots..I'm working on finding a new doc...
I actually have gotten all my MRI reports and only my last MRI CD..(free of charge) I am thinking of going back and requesting the rest of CD's... They may end up charging me but in the past they have been free..
Jibs
I actually have gotten all my MRI reports and only my last MRI CD..(free of charge) I am thinking of going back and requesting the rest of CD's... They may end up charging me but in the past they have been free..
Jibs
jibs,
I'm amazed at the years you've spent in limbo and the courage with which you face these challenges. You just seem so courageous! I understand the confusion or frustration over not having your MRI's explained. YOU DESERVE BETTER! I just picked up a copy of my MRI's so I can take them with me and have them re-eval'ed as mine were never explained to me either. A friend that works at the hospital gave me the heads up and told me to make sure to let them know I would be taking them to another doctor. Because of this, they didn't charge me for the cd. Otherwise, it would have cost me $30. Do you have the MRI images or just the reports?
I'm just so mad at the care you've received!
All the best,
--faithHGL
I'm amazed at the years you've spent in limbo and the courage with which you face these challenges. You just seem so courageous! I understand the confusion or frustration over not having your MRI's explained. YOU DESERVE BETTER! I just picked up a copy of my MRI's so I can take them with me and have them re-eval'ed as mine were never explained to me either. A friend that works at the hospital gave me the heads up and told me to make sure to let them know I would be taking them to another doctor. Because of this, they didn't charge me for the cd. Otherwise, it would have cost me $30. Do you have the MRI images or just the reports?
I'm just so mad at the care you've received!
All the best,
--faithHGL
hi jibby,
i imagine typing this out in timeline form was probably helpful to you as well as to us to see what's been going on with you over the years.
i know a proper neurologist will be integral in helping you get some answers.
xoxox
binx
i imagine typing this out in timeline form was probably helpful to you as well as to us to see what's been going on with you over the years.
i know a proper neurologist will be integral in helping you get some answers.
xoxox
binx
Wow is all I can say.
I am not a doctor but there are only a few diseases which cause demylination damage.
Transverse Myelitis
MS
Chronic Inflammatory Demyelinating Polyneuropathy
white matter changes seen on MRI are usually attributed to vascular or blood vessel changes resulting in decreased blood supply and oxygen to very small (and often clinically silent) areas in the white matter of the brain rather than demyelination to those who suffer migraines and hypotension.
I would never point anyone to MS but they did put it in the frame I take it?
I have this nausea actually right now today. I hate it. I just feel sick all the time like I am pregnant.
I believe mine has started because I have the heater on finally, it has devistating effects on my illness. I feel quite poor today.
Some of what you describe I have had too.
It sounds more than Migraine and seems to moving into a pattern.
I would certainly keep going on this Jibs there is obviously a demylination process going on.
LIke I said i would never point anyone to any specific illness but there are only a few that can fit.
I would certainly keep moving forward with this jibs.x
I am not a doctor but there are only a few diseases which cause demylination damage.
Transverse Myelitis
MS
Chronic Inflammatory Demyelinating Polyneuropathy
white matter changes seen on MRI are usually attributed to vascular or blood vessel changes resulting in decreased blood supply and oxygen to very small (and often clinically silent) areas in the white matter of the brain rather than demyelination to those who suffer migraines and hypotension.
I would never point anyone to MS but they did put it in the frame I take it?
I have this nausea actually right now today. I hate it. I just feel sick all the time like I am pregnant.
I believe mine has started because I have the heater on finally, it has devistating effects on my illness. I feel quite poor today.
Some of what you describe I have had too.
It sounds more than Migraine and seems to moving into a pattern.
I would certainly keep going on this Jibs there is obviously a demylination process going on.
LIke I said i would never point anyone to any specific illness but there are only a few that can fit.
I would certainly keep moving forward with this jibs.x
Just a note..when I said Migraine meds stopped, he stopped my topomax which was a daily med i took for preventative..I continued o take Amerge which is an abortive med for miraine...i take an Amerge pill when i feel a migraine coming on....
Just wanted to clarify...He just restarted my Topomax this past Monday in addition to amerge.
Jibs
Just wanted to clarify...He just restarted my Topomax this past Monday in addition to amerge.
Jibs
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