tearydawn

Active Member
Is it possible that this is just a different form of MS? How many of us have brain lesions? I'm being monitored for MS at the moment. I've had symptoms for 16 years starting in the military post vaccinations. I do have small lesions in my frontal and occipital deep white matter. (periventricular)

There are supposed to be 5% of MS sufferers who have 0 lesion load. Could this be the group or a form of MS without the lesions and PEM being the hallmark symptoms? I was finally diagnosed with CFS in 2016 after so much testing and negative results.

My fibro flared first in Nov 2014 then in Feb 2015 I had my classic flare (MS?) with blurry vision and dizziness, vertigo, and balance issues followed by a numb lower right leg which stayed that way for almost a year. Finally had an MRI in July 2016 which showed the lesions but did not get a diagnosis for MS as they are taking a wait and see approach.

I'd have to check my med records (brain fog) to see when my CFS flared up but I believe it started showing gradually after my fibro flare but not fibro as more consistent with my flu like illness, body aches, chills, muscle pain. These symptoms have consistently gotten worse. I've had these symptoms as well over the last 16 years but not at the level I see now. So Relapsing till finally primary progressive course just like MS. Just my thoughts
 
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GG

Well-Known Member
Is it possible that this is just a different form of MS? How many of us have brain lesions? I'm being monitored for MS at the moment. I've had symptoms for 16 years starting in the military post vaccinations. I do have small lesions in my frontal and occipital deep white matter. (periventricular) There are supposed to be 5% of MS sufferers who have 0 lesion load. Could this be the group or a form of MS without the lesions and PEM being the hallmark symptoms? I was finally diagnosed with CFS in 2016 after so much testing and negative results. My fibro flared first in Nov 2014 then in Feb 2015 I had my classic flare (MS?) with blurry vision and dizziness, vertigo, and balance issues followed by a numb lower right leg which stayed that way for almost a year. Finally had an MRI in July 2016 which showed the lesions but did not get a diagnosis for MS as they are taking a wait and see approach. I'd have to check my med records (brain fog) to see when my CFS flared up but I believe it started showing gradually after my fibro flare but not fibro as more consistent with my flu like illness, body aches, chills, muscle pain. These symptoms have consistently gotten worse. I've had these symptoms as well over the last 16 years but not at the level I see now. So Relapsing till finally primary progressive course just like MS. Just my thoughts
How about breaking up this 1 block of text to make it easier for online people to read? Thanks

GG

Edit: Yes, much better! And I have had a brain MRI, due to headaches, that was years ago. Wonder if they were looking for lesions then? Not sure. Might want to look into Low Dose Natltrexone (LDN) if you are in limbo with treament? And seems like some of those MS drugs are pretty heavy duty, and expensive!
 
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tearydawn

Active Member
How about breaking up this 1 block of text to make it easier for online people to read? Thanks

GG

Edit: Yes, much better! And I have had a brain MRI, due to headaches, that was years ago. Wonder if they were looking for lesions then? Not sure. Might want to look into Low Dose Natltrexone (LDN) if you are in limbo with treament? And seems like some of those MS drugs are pretty heavy duty, and expensive!
I'm only on Elavil for the weird body wide fasciculations/vibrations and oxycodone for the pain. I would not take the MS drugs even if I do get diagnosed. I've gone this long with whatever I have and I read that they do not help once it gets to the progressive mode. If your MRI showed any lesions, they would notate that in the report. I too get headaches, they are awful! I've actually considered LDN but since I'm on oxycodone, not sure how well that would work. The oxycodone is activating for me so it eliminates they heavy fatigue feeling that I have.
 

Aidan Walsh

Well-Known Member
Is it possible that this is just a different form of MS? How many of us have brain lesions? I'm being monitored for MS at the moment. I've had symptoms for 16 years starting in the military post vaccinations. I do have small lesions in my frontal and occipital deep white matter. (periventricular)

There are supposed to be 5% of MS sufferers who have 0 lesion load. Could this be the group or a form of MS without the lesions and PEM being the hallmark symptoms? I was finally diagnosed with CFS in 2016 after so much testing and negative results.

My fibro flared first in Nov 2014 then in Feb 2015 I had my classic flare (MS?) with blurry vision and dizziness, vertigo, and balance issues followed by a numb lower right leg which stayed that way for almost a year. Finally had an MRI in July 2016 which showed the lesions but did not get a diagnosis for MS as they are taking a wait and see approach.

I'd have to check my med records (brain fog) to see when my CFS flared up but I believe it started showing gradually after my fibro flare but not fibro as more consistent with my flu like illness, body aches, chills, muscle pain. These symptoms have consistently gotten worse. I've had these symptoms as well over the last 16 years but not at the level I see now. So Relapsing till finally primary progressive course just like MS. Just my thoughts
* In all the time you have been Sick have you ever been told you have Ehlers-Danlos Syndrome types especially Hypermobility or other types some have numerous types the reason I am asking is I now see

countless diagnosed with this instead & have you also ruled out (HFI) hereditary fructose intolerance...I see this also in EDS as well. thanks hope you get fully well soon. blesses 2 u :)'s
 

tearydawn

Active Member
In all the time you have been Sick have you ever been told you have Ehlers-Danlos Syndrome types especially Hypermobility or other types some have numerous types the reason I am asking is I now see

countless diagnosed with this instead & have you also ruled out (HFI) hereditary fructose intolerance...I see this also in EDS as well. thanks hope you get fully well soon. blesses 2 u :)'s[/QUOTE]

Funny you asked, I've researched it quite a bit as I have some similar symptoms but none of the skin issues associated with it. I've had a genetic profile done and based on that, I do not have the genetic disposition for EDS. Having said that, they are uncertain as to the genes involved with hypermobility type. I do seem to have loose joints and they all pop but I've never had any dislocations.

I've never heard of HFI. Might have to research that one. Most hereditary issues have been ruled on based on that gene study. I'm only a carrier for certain conditions but no genetic conditions inherited. Also too, no one in my family has the issues I have, including the migraines, IBD, ect. Only IBS is shared by members of my family.

Thank you for your insights!
 

Aidan Walsh

Well-Known Member
In all the time you have been Sick have you ever been told you have Ehlers-Danlos Syndrome types especially Hypermobility or other types some have numerous types the reason I am asking is I now see

countless diagnosed with this instead & have you also ruled out (HFI) hereditary fructose intolerance...I see this also in EDS as well. thanks hope you get fully well soon. blesses 2 u :)'s
Funny you asked, I've researched it quite a bit as I have some similar symptoms but none of the skin issues associated with it. I've had a genetic profile done and based on that, I do not have the genetic disposition for EDS. Having said that, they are uncertain as to the genes involved with hypermobility type. I do seem to have loose joints and they all pop but I've never had any dislocations.

I've never heard of HFI. Might have to research that one. Most hereditary issues have been ruled on based on that gene study. I'm only a carrier for certain conditions but no genetic conditions inherited. Also too, no one in my family has the issues I have, including the migraines, IBD, ect. Only IBS is shared by members of my family.

Thank you for your insights![/QUOTE]
* Something to think about the fact there is no diagnostic test for EDS 3 but some as mentioned have multiple known as a crossover those of which can be tested...(HFI) is definitely there the big question is what percentage has this as well...It could also explain bad responses to foods, medicines including Hospital procedures as well...
 

tearydawn

Active Member
* Something to think about the fact there is no diagnostic test for EDS 3 but some as mentioned have multiple known as a crossover those of which can be tested...(HFI) is definitely there the big question is what percentage has this as well...It could also explain bad responses to foods, medicines including Hospital procedures as well...[/QUOTE]

I'm certainly looking forward to seeing a new neurologist who can offer insights into my conditions! Thanks again.
 

mymichelina

Member
:wacky:I have white matter lesions in Pons and Midbrain. I have had MRI's following original findings and there does not seem to be any changes.
 

tearydawn

Active Member
:wacky:I have white matter lesions in Pons and Midbrain. I have had MRI's following original findings and there does not seem to be any changes.
I too have no changes as of yet. MRI was 5 months apart. At this point I'm waiting for what I consider another flare then will repeat the MRI. What did your doctor have to say about the lesions?
 

mymichelina

Member
They said they were micro vascular lesions that they believe are caused by small strokes. (That was not very reassuring at all!!) Yet this was over 10 years ago, I was sent to neurologists...at first certain I had M.S. Then after seeing the MRI's they said that the "fingers" were not pointing the correct way for it to be M.S. I had spinal which was negative for whatever would be positive for M.S.
The last time I saw the neurologist I was told I have CRPS, CFS, and Fibromyalgia. I was told my primary was treating me with all the same medications he would use, so I no longer needed to see him. I have heard this also from other Neurologists, and Rheumatologists, Pain Specialists, Bone Specialists, Gastroenterologists, Cardiologists, Edocrinologists, Urologists, Dermatologists, Pulmonologists, Proctologists, Anesthesiologists, Infectious Disease Specialist.....I could go on but you know how it all is. I have had about 5 at least MRI's. I have had so many scopes and ultrasounds and x-rays and cat scans. I have lost so much.
 

tearydawn

Active Member
They said they were micro vascular lesions that they believe are caused by small strokes. (That was not very reassuring at all!!) Yet this was over 10 years ago, I was sent to neurologists...at first certain I had M.S. Then after seeing the MRI's they said that the "fingers" were not pointing the correct way for it to be M.S. I had spinal which was negative for whatever would be positive for M.S.

Thank you for sharing. Did you have the symptoms of MS? I ask as I do. But I do read that CFS and MS are very similar conditions. I have pattern of relapsing remitting dizzy spells with blurry vision particularly in my right eye along and sometimes both along with many other symptoms. The numb leg for a year... I too am convinced...Sigh. I have a friend on facebook with MS. We have all the same issues. Neurogenic Bladder. I guess time will tell. I also was diagnosed with fibro and of course CFS. Have you found anything that helps you?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Is it possible that this is just a different form of MS? How many of us have brain lesions? I'm being monitored for MS at the moment. I've had symptoms for 16 years starting in the military post vaccinations. I do have small lesions in my frontal and occipital deep white matter. (periventricular)

There are supposed to be 5% of MS sufferers who have 0 lesion load. Could this be the group or a form of MS without the lesions and PEM being the hallmark symptoms? I was finally diagnosed with CFS in 2016 after so much testing and negative results.

My fibro flared first in Nov 2014 then in Feb 2015 I had my classic flare (MS?) with blurry vision and dizziness, vertigo, and balance issues followed by a numb lower right leg which stayed that way for almost a year. Finally had an MRI in July 2016 which showed the lesions but did not get a diagnosis for MS as they are taking a wait and see approach.

I'd have to check my med records (brain fog) to see when my CFS flared up but I believe it started showing gradually after my fibro flare but not fibro as more consistent with my flu like illness, body aches, chills, muscle pain. These symptoms have consistently gotten worse. I've had these symptoms as well over the last 16 years but not at the level I see now. So Relapsing till finally primary progressive course just like MS. Just my thoughts
I think its possible.

One thing different is that MS patients seem to have more fatigue but not nearly as much PEM. Then again some people with ME/CFS fit that profile.

It's such a gray area. At one time I was experiencing neurological symptoms and was tests for MS and all the neurologist could say is that there's something there but I don't know what is is and it doesn't fit the profile of MS.

Be sure to read Rachel Riggs experience of being diagnosed with MS, being treated with an MS drug and responding spectacularly - far better than any MS patient. That suggested the MS drug was targeting something more applicable to ME/CFS - at least her version of it - than MS - and that the two may be quite closely linked.


 

tearydawn

Active Member
I think its possible.

One thing different is that MS patients seem to have more fatigue but not nearly as much PEM. Then again some people with ME/CFS fit that profile.

It's such a gray area. At one time I was experiencing neurological symptoms and was tests for MS and all the neurologist could say is that there's something there but I don't know what is is and it doesn't fit the profile of MS.

Be sure to read Rachel Riggs experience of being diagnosed with MS, being treated with an MS drug and responding spectacularly - far better than any MS patient. That suggested the MS drug was targeting something more applicable to ME/CFS - at least her version of it - than MS - and that the two may be quite closely linked.


Thanks for the response! I have both PEM and lassitude. I've read they are very similar to each other but that PEM set's CFS apart from MS. I guess it is rare to have both but could happen.

I will have to look up Rachel Riggs experience. Haven't read that one yet. I'm very hesitant to take most meds as I have chemical sensitivities as well. Fun times. This has been an exhausting journey so far. Take care!
 

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