This Is MS Multiple Sclerosis Knowledge & Support Community

oo

yea that heat stuff i think is because the nerve conductivity gets screwed up in the damaged spine, at smaller extremes of temperature than in regular folks. so if she has no spinal lesions that makes sense the heat doesn't bother her so much, and that there's no l'hermitte's. wish i had some of my mri images with me here - i would post them. maybe i can get my neuro to email me a few.... i will ask.

This all raises a lot of questions. However as noted above it is hard to find someone reliable/talented/honest enough to look at spinal damage.

The study shows promise.

Lyon - it's a good question about lesions and non-MSers. It's something I mentioned to my neuro. How do they know everyone doesn't have them?


J.

Dear all,

The Boston Cure Project is looking at trauma as a possible cause / trigger for MS. There was some research about a year ago which concluded that trauma did not have a role. The same conclusion could be drawn about most brain diseases (although I read that ALS was higher among Italian footballers).

The trauma theory doesn't fit with the geographical spread of MS, the gender balance, the age profile (usual dx 20-40). Also, the genetic issue. If trauma was a player you'd expect more footballers, rodeo riders etc etc. Trauma is attractive as it gives the possibility of correction etc. Sorry to put a damper on this, but it's something going wrong with the CNS that starts a cascade of events etc etc.

As people get older they do get lesions. This makes it difficult to dx those in later life with MS.

Ian

oo

i strongly believe that trauma can be a contributing factor to the onset of neurologic symptoms and that the diagnostic tools for ms are too vague to rule out such a factor just because it isn't found in the case history of every single patient.

i'm going to underline here that i still am firmly convinced that my chronic problem is

1) subacute combined degeneration of the spinal cord due to long-term dietary negligence, which causes thoracic and cervical lesions exactly similar to those in ms, (i have the lab work showing b12 deficiency, but the ms clinic tells me i never had b12 deficiency and it was always ms)
and

2) full on candida issues which have been shown in others to manifest similar cranial lesions to mine, not to mention candida-specific oligoclonal bands in spinal fluid,

in this context, i feel my acute attack was triggered by the snowboard accident, which exacerbated the pre-existing cervical lesion. i firmly believe that at least in my case, this is a manageable and potentially reversible condition.

i went to my coz's work and spoke with some people. at first they were talking about an ms doc referral but by the end we were on my preferred track (i didn't want anyone stuck in the ms mindset) and they gave me the name of a spinal injury doc.

we shall see if my brand of ms can be helped at all by looking for a pinched nerve in my neck. even though there's a lot of other stuff going on.

oo

hi bob

i had symptoms such as l'hermitte's for a long time prior to my snowboarding accident. i also had various problems like numbness or lost coordination or weakness which always resolved if i would bother to take my b12 for a few days. subacute combined degeneration of the spinal cord results in thoracic and cervical lesions that are really only distinguishable from ms lesions when you throw in other things like oligoclonal banding. which i have. without further testing for specificity, all the bands indicate is chronic cns inflammation which is not typically an issue in cobalamin deficiency. but there are other factors besides b12 in play in my case, such as the candida.

i refer to my condition as ms because the doctors have placed a check mark beside each item on the list of conditions that are required for ms diagnosis. mind you their differential diagnosis regarding cobalamin was a bit off but whatever. i have all the check marks.

regarding turning it around, i did say manageable, and potentially reversible. i have read too many accounts, both anecdotal ;) and in the context of peer reviewed studies, of problems corrected and symptoms resolving, not to believe that some aspects of some forms of ms are manageable and indeed reversible. i mean here alone you must have read about sarah's treatment and dave's approach. i'm not saying that i think any single approach would definitely work for each patient. in my particular case, we will just have to see if my attempts to fix things are successful.

all in all, i don't think the definition of ms is in any way clear and specific enough to make generalizations like 'irreversible' about the disease as a whole. we shall see!

oo

Little as I like it, at least for now, if someone shows evidence that they were "cured" of MS the only realistic option is that they were misdiagnosed and didn't really have MS to begin with.

it's quite possible bob. because of my experience i am inclined to be very skeptical about what an ms diagnosis means, exactly. i consider it quite likely that misdiagnosis is rampant because the requirements for diagnosis are so general, and actually if it were investigated further, that a variety of more specific issues could be treated and resolved. but now it's just oh throw interferon or something at a list of symptoms and hope for the best.

oo

Bob

Thanks for the info.

Jimmylegs

You are right about misdiagnosis.

Even though I passed the spinal tap, clinical exam and MRI tests, my neuro still wrote "probable MS" on his letter to me. They don't like to say it's definite as they change their minds. When I was in hospital I met a woman who was diagnosed with MS only to have the diagnosis reversed 10 years later. OK, so they didn't know what was wrong with her - she was not well - but a diagnosis can do a lot to wear someone down. If it turns out to be false, that's a terrible mistake to make.

J.

sucks doesn't it jaded. friend of a friend got her diagnosis overturned after a few years too. the only acid test is having multiple attacks but i mean that is so lame! guess if they can sucker in a few drug buyers who would never have had a second attack anyway, just makes the meds look more effective, doesn't it!

oo