My Regimen (any tweaks?)

Tell us what you are using to treat your MS-- and how you are doing.

Postby lionheart » Sun Feb 22, 2009 10:42 am

Hello, Abe! What does your doctor mean by saying he's almost certain....
How about a definite certainty, an MRI for example...
Have you made any?
Because taking all this stuff and wasting so much emotional energy...if evth is alright...I don't know, but don't you know to learn for certain before doing all this?
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Postby cheerleader » Sun Feb 22, 2009 11:49 am

Lion...
There's really no certainty with MS, since it is mainly still a diagnosis of exclusion. The McDonald Criteria is the best diagnosing tool we have.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

I'm sure Abe's doc gave him reason for his pre-MS diagnosis. My husband had his first flare 2 years ago at the age of 43. We've kept his MS from progressing (no new lesions on MRI, no new disabilities) with a nutritional/lifestyle program I put together with help from my friends here on the site, and with tons of research. Dmitris has been a huge resource, as well as Jimmylegs, Cure and Gibbledygook. You can read it by clicking on the blue endothelial program under my signature. It explains our "journey" to health. I truly believe that MS can be kept in remission with diet, nutritional supps, exercise, stress reduction. It's working for people around the globe.

WOW! I had no idea about Kurzweil! Thanks for the tip, Abe. I'll be sure to get the book. My husband and I are both prof musicians, and Jeff's owned many synths in his day! He was able to use the synclavier in the beginning stages at conservatory. His composing is Mac/logic centered now, and it's amazing to see how the technology has evolved. Music and composing is so good for the brain...so keep writing, listening and healing!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Abe » Sun Feb 22, 2009 12:26 pm

cheerleader wrote:Lion...
There's really no certainty with MS, since it is mainly still a diagnosis of exclusion. The McDonald Criteria is the best diagnosing tool we have.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

I'm sure Abe's doc gave him reason for his pre-MS diagnosis.
AC


Indeed he has; Cheer I have PM'd you about music :)
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Postby Abe » Tue Feb 24, 2009 3:25 am

Thanks for all the help guys.

I know my regimen may look excessive to some; like everybody else here I'm just trying to play these terrible cards the best I can, with the fragments of knowledge I can collect.

It's very difficult. Looking back in 10 years time I will probably look back at this regimen with utter despair! However it's the best I can make it at the moment with my financial resources and limited medical support.

Good health and good luck to all! :D
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Postby lionheart » Tue Feb 24, 2009 3:50 am

Cheer, What do you mean by 'there's no certaninty with MS', do you mean that an MRI isn't enough evidence that you DO have MS? That you may have lesions, etc. plus some minor problems (not disability) and NOT have MS? Take CRAB and not have ms?

Forgive me, I don't really believe this, I wish it was true though, very very much, but think mri is conclusive and certain.
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Postby jimmylegs » Tue Feb 24, 2009 6:29 am

lion when i was dx'd i told them my case was b12 deficiency. they said it wasn't because i didn't have spine lesions only, i also had oligoclonal bands and brain lesions. they didn't look for any other deficiencies but b12, but which it turned out later from my initiating the testing, that i did have. my b12 level was okay at dx, because i was for once supplementing like mad to try to turn things around, but it was too late. my doctor had no record in my electronic chart of any prior b12 deficiency. it was because her computer system couldn't graph the following text from my lab results: 'less than 75'.
in the literature i eventually found research describing brain lesions and oligoclonal banding in b12 deficiency. and they find all kinds of lesions in people at autopsy that would have met the criteria to dx ms when they were alive, except they never had a single symptom.
the criteria are all based on statistics. in my case i knew i did not fit into the statistical norm. how many long term vegans are built into those statistics that they use to diagnose? none?
so truly it is not all hard and fast.
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Postby cheerleader » Tue Feb 24, 2009 8:55 am

lionheart wrote:Cheer, What do you mean by 'there's no certaninty with MS', do you mean that an MRI isn't enough evidence that you DO have MS? That you may have lesions, etc. plus some minor problems (not disability) and NOT have MS? Take CRAB and not have ms?

Forgive me, I don't really believe this, I wish it was true though, very very much, but think mri is conclusive and certain.


Lion...
MS is a diagnosis of exclusion . That means that when everything else has been discounted, the MS diagnosis is given. You can have lesions in MANY other diseases. We've had a poster on here, Misdiagnosed, who was treated for four years with Copaxone before it was discovered she had Hughes Syndrome (antiphospholipid syndrome). MRI is NOT conclusive. Here is one of many university papers regarding the Differential Diagnosis of Multiple Sclerosis ...
http://www.neurology.wisc.edu/publicati ... euro_2.pdf


If you have a good neurologist who has gone thru all of the other possibilities completely, tested you for the differentials, and you fit the McDonald Criteria, you can be pretty certain of your diagnosis. I do not say these things lightly, or to offer false hope, I just want you to realize the scientific facts. An informed patient is a wise patient.
AC

Sorry to highjack, Abe...back to you!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby lionheart » Tue Feb 24, 2009 9:45 am

Thank you for clarifying, Cheer. But I am thinking - in order to go to a neuro this means you have some neurological problems, either a double vision, or numbness, or anth else, (hence you meat some McDonald criteria). Not that you haven't had any complaints (relapses of a kind) but just lesions...Hence, they eventually send you to MRI and then the lesions are seen, plus the problems and here it is you have MS. Seems pretty conclusive to me...

Perhaps I am not acquainted with the desease enough and as far as good neurologis are concerned, I'm seeing the best here, but we're a small country and the best here doesn't mean good enough. Leave alone the mri technique. That's why I am looking for a second opinion and hopefully will visit Dr. Sadiq in NY.
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Postby lionheart » Tue Feb 24, 2009 10:00 am

The second opinion isn't to prove the diagnosis, as mine is definitely ms, my complaints were typical, but just to find a professional opinion of a doctor with reputation on my current treatment.

I read the article you gave link to, Cheer, thanks for it and i must agree that perhaps there are people whose symptoms are not typical for ms and it's hard to dx them.
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