csf myelin question.....

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MICHELLE40f

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When i first started getting "sick" they thought i had ms(for several years actually) well my mris were normal and i had no "o" bands in csf but i did have a .6 level of myelin,i have always wondered about this,anyone else? caroline how bout you? lol i think you were the other person who said they first thought you had ms.am i correct? anyway thanks for any info........{{{{{{{hugs}}}}}}} michelle
 

olly

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hi michelle

yes ms was suspected for a long time.
i had serial mri's for 7yrs but all were normal.
i did not have a spinal tap,i wanted to put that off unless necessary.
also cerebeller atrophy was suspected but serial mri's ruled that out as well.
in some it can take a number of years for deseases like these to show if it progresses slowly,but my neuro is sure everything has been ruled out so it only leaves mnd.
i'm not sure on the pathology you are talking abou but i have membership to neurological sites and will have a look for you.
take care.
caroline:)
 

olly

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hi michelle.

i put in .6 myelin level and this is all i could find for now.
i could not find info of if it is high or low,but myelin can be effected by many many things not just ms.
if your mri's have been ok for some years and your optic nerves are ok that would rule out ms.
this bit of info may help.
take good care.
caroline:-D




No association between anti-myelin oligodendrocyte glycoprotein antibodies and serum/cerebrospinal fluid levels of the soluble interleukin-6 receptor complex in multiple sclerosis

Myelin-oligodendrocyte glycoprotein (MOG) specific antibodies (abs) are involved in autoantibody-mediated demyelination possibly contributing to lesion development in multiple sclerosis (MS). Interleukin-6 (IL-6) has been reported to play a crucial role for the pathogenesis of a MOG-induced animal model of MS. To investigate the link between anti-MOG abs production and IL-6 up-regulation in MS we determined the presence of anti-MOG abs and measured concentrations of IL-6 and its soluble receptors (sIL-6RC) in paired serum and cerebrospinal fluid (CSF) samples of MS patients and serum samples of age-matched healthy controls (HC). Anti-MOG abs were detected in 75% of MS sera, 57% of MS CSF samples and 20% of HC sera. There was no difference in IL-6 and sIL-6RC levels between anti-MOG abs positive and negative samples. Thus, no association between the presence of anti-MOG abs and serum/CSF levels of IL-6/sIL-6RC was found.
 

sral

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Caroline,

Did I understand your post correctly in that MG can take years to be detected? Is this correct?
 

olly

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sral

in a very few cases it can take a while to diagnosed ms.
the reason is if it is slow progressing,attacks are mild or some people with ms can recover better in that there brains can in the early stages repair the damage.
but eventually the damage will show up as the brain can only repair it for so long.
people can sometimes be diagnosed with ms even though they have a normal mri scan but other tests like a spinal tap show it up,but the optic nerve is a dead givaway and shows up pale. my neuro always checked this and it is ok.
take care.
caroline:)
 

MICHELLE40f

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thanks for info........

i have read the myelin levels before and mine is definitely out of the normal range ,it shouldnt be over 0.0-0.3 at the very most. anyway i was just curious if anyone else with our symptoms had the high myelin level also....thanks again
 

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Caroline,

What do you mean by optic nerve? My mom did not have this done. Is this key in identifying MG?
 

MICHELLE40f

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sral

Its MS that caroline is referring to,im not sure about optic neuritis with MG,but I'm sure someone on here could tell ya,or you could google it..i like to google:?:lol God bless.....michelle
 

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Caroline,

Did I understand your post correctly in that MG can take years to be detected? Is this correct?

Hi, Sral ... I have heard that it can take a looooooong time to get a diagnosis of MG. In some cases, years, esp. if the patient is "serro negative, " (i.e., no antibodies found in blood tests.) I believe that there are several different antibodies that can cause MG, but only two have been identified so far, which is why patients are sometimes diagnosed on clinical symptoms alone.

The following website (U.S. Dept of Health, I think) lists all the MG symptoms and diagnostic procedures.

http://www.womenshealth.gov/faq/mgravis.htm#e

BethU
 

sral

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thanks Beth.

Is it possible though to show symptoms like my mom does and not see any antibody abnormalities in blood work?
 

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hi ms/mg

when i was talking about the optic nerve in ms,the neuro looks into your eyes with a torch.
in ms there is usually optic nerve inflamation even if you don't have symptoms like blurred vision or loss of central vision.
in ms the optic nerve looks pale compared to a normal one.
ms can be suspected by this sign even before any other tests as it is a strong indicator.

ms is not the same as mg.
they are both classed as autoimmune deseases.
in ms it is demyelination/loss of myelin that causes the desease and is a cns desease.

in mg the person show an antibody to the receptor of acetylcholine in the muscles,the antibody is produced by t lymphocytes which originate in the thymus gland.
this effects nerve impulses between nerve endings and the muscles and is a parasympathetic nervous system desease.
hope that helps you tell the difference.
take good care.
caroline:-D
 

BethU

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thanks Beth.

Is it possible though to show symptoms like my mom does and not see any antibody abnormalities in blood work?

YES, it is very possible to have MG and not have any antibodies show up in blood tests. In fact, the antibodies will never show up in general blood work, such as your mom had done recently ... you have to do very specific tests for the antibodies.

The "Achr" test identifies the most common MG antibody, but now in the last two years, researchers have identified a second antibody that accounts for another percentage of MG cases. This is the "MuSK" test. So your mom would need to have those 2 specific blood tests done to test for MG.

And even if the tests are both negative, it might still be MG. About 7% of MG patients do not show either of those two antibodies ... but they are still clinically diagnosed as MG, and treated appropriately. It sounds (to me) like there are other antibodies that could be factors, and they just haven't identified them yet. So ... they can't test for them.

If either of the antibody tests is positive, you've got your diagnosed. If it's negative, then it becomes a question of clinical judgment, follow-up, and observation.

BTW, treatment for MG is no picnic ... it's long, tedious, and uses dangerous drugs because they have to suppress the patient's immune system ... and it takes a long time to work, but it can reverse the disease process and leave patients symptom-free. And that is wonderful!

If your mom has MG, she can live a good long life as long as her breathing isn't affected, but of course, without treatment, she'll have these very difficult symptoms to deal with ... speech, swallowing, possibly sight problems, limb weakness, etc. If there's any possibility of MG, neuros should do everything they can to test for it so they can start treatment immediately.

I spent a year with false hopes that I had MG not ALS, and I don't want to give anybody else false hopes, too ... but since MG can be successfully treated, neuros should fully investigate all possibilities and be willing to do anything they can to rule it out.

Good luck. Tell your mom we're pulling for her!
BethU
 

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thanks for the info on mg!

Caroline~strange that you referenced t-lymphocytes, I have had elevated cd3 t-cell for awhile. who knows if it means anything but my neuro had it done and repeated at mayo to r/o immune complex disease.
I have been hoping MG but twitching does not normally present with that. my neuro is looking into Mg, I am going to request those tests, beth! thanks!(i am not getting my hopes up)

I did have an episode of weakness for almost 2 years when I was in my early 20's. I thought I had ms or somthing. It was strange, they never fond anything and after a long while I was fine. I heard MG can come back? I was mis diagnosed with ms, I would take that over this! I hope deep down that maybe it is some form of ms, but my eyes are fine.

I did read that with MG, you get double vision. Is that true all the time? My vision has gotten worse, I also had optical migranes recently-but no double.

anyway, take care and thanks for sharing! It means so much to me!

april
 

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thanks for the info on mg!

I did have an episode of weakness for almost 2 years when I was in my early 20's. I thought I had ms or somthing. It was strange, they never fond anything and after a long while I was fine. I heard MG can come back? I was mis diagnosed with ms, I would take that over this! I hope deep down that maybe it is some form of ms, but my eyes are fine.

I did read that with MG, you get double vision. Is that true all the time? My vision has gotten worse, I also had optical migranes recently-but no double.

anyway, take care and thanks for sharing! It means so much to me!

april

Hi, April ... I have read that MG can sometimes go into spontaneous remission or can plateau ... so I believe it could show up and then disappear and then come back. But I am no doctor, so don't trust that! But I do know that spontaneous remissions can happen with MG.

MG does not always affect the eyes ... in fact, they specify it as "ocular MG" when it does. A certain percentage (don't know the #s) of MG patients never develop any vision problems at all. MG can present as vision problems, limb weakness and extreme fatigue, or bulbar symptoms. You can also get blurred vision, without double vision. (I'm on my 4th prescriptions for glasses in 2 years. Sight keeps getting worse and worse.)

The limb weakness can progress very rapidly and be very debilitating. MG is a nasty disease, too ... but since it can be treated, that makes all the difference.

One other characteristic of MG is that the symptoms tend to worsen during the day, and your muscles weaken with repetitive motions.

Hope, hope, hope you get good results from the tests! At the very least, it's important to rule MG out, since the symptoms overlap so much with ALS, and it's hard enough to deal with ALS without having nagging doubts that the neuros didn't investigate fully.
Take care,
BethU
 

sral

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Beth you seem to know quite abit about MG. I guess this is because you were at one point diagnosed with it.

As I said before, I'm trying to figure out whether my mom was misdiagnosed. Her symptoms started 3 years ago with speech issues. Today her speech and legs are affected. She can still speak and be understood but it's slow and slurred but still understandable. She can walk but waddles and has balance issues.

I read that with MG people can develop a waddle gait and this is what my mom has. She walks with a waddle. Whereas in PLS I read that the gait is more ataxic.

Also, with MG I read that people have difficulty going up stairs and my mom definitely has issues going both up and down stairs (more up than down). People on this forum with PLS say that they really have trouble going down but not up.

Would you know about the MG gait and trouble with stairs?
 
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