Ideas

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

Ideas

Postby LiquidSkin » Wed Jun 18, 2008 2:43 am

Alright I was Dx less than 4ish months ago, and I keep asking my doctor what I should do to keep healthly what is best to avoid and what might I eat or do more of to keep in the best health I can to fight MS. Well, he said really nothing I can do -_- see... I dont believe that ...

What foods, vitimins, or actions, have you guys done to make yourself feel normal? cause 9 times out of 10 when I get up every morning I feel like my whole body is off on a lot of things.

Side Note - Read this book MS recovery diet, any truth in the idea of avoiding dairy and eggs and legumes to reduce symptoms?
User avatar
LiquidSkin
Family Member
 
Posts: 40
Joined: Thu Feb 28, 2008 4:00 pm
Location: Watertown, NY

Advertisement

Postby jimmylegs » Wed Jun 18, 2008 6:37 am

hi there, yea my docs have pretty much been similarly non-committal on nutrition. there are a few diets, i reckon you can pick and choose. swank, best bet. a few supplementation regimens also. you can tailor-make one to suit you based on what feels "off".
one supplement regimen that i modified for my own use was the klenner protocol. i just used my version for three days. (no injecting, no liver). it made a big difference for me.
i don't recall the klenner protocol including vitamin D3. the literature on vitamin D and the immune system was in its infancy, or yet to come when klenner made up the protocol.
vitamin D3 is a good anti-inflammatory starting point. fish, both for the D3 and the omega 3 fatty acids. the literature says, 4000IU per day (combined sunshine, dietary and supplement). needs to be balanced with 1200mg calcium and 600mg magnesium.
re side note on avoidance: my take on this is that some people advocate avoiding foods that are potential allergens or have potential inflammatory properties. i think it makes more sense to boost the things your body needs more of, such as anti-inflammatory nutrients - bring the system into balance by upping the deficit side, instead of dropping the side that's overdone. my viewpoint on this is because a lot of my problems came from taking away foods from my diet prior to dx.
there are some on here that are avoiding dairy and possibly eggs too. i avoided both for 15 years and then got diagnosed so it certainly didn't protect me. the klenner protocol advocated a high protein diet with 2 eggs for breakfast each day and it really helped me. i don't imagine the eggs were solely responsible but yea. they certainly did not seem to hurt.
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 8944
Joined: Sat Mar 11, 2006 4:00 pm

Postby Anecdote » Wed Jun 18, 2008 11:15 am

Sound advice from Jimmylegs here, much more useful than from the neuro. They seem to be one and the same: mine said there was nothing that could be done and didn't even mention Vitamins D and B12.

I also take 4000iu of D3 plus 5000mcg or more of B12. A good starting point for helpful vitamins and supplements can be found here: http://www.davidwheldon.co.uk/ms-treatment.html and yes, Dr David Wheldon is my husband before anyone comments.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
Anecdote
Family Elder
 
Posts: 2102
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby DIM » Wed Jun 18, 2008 12:53 pm

Bear in mind to buy B12 Methylcobalamin and not Cyanocobalamin as the first is anti-inflammatory while the second can - under special circumstances - be pro-inflammatory!
User avatar
DIM
Family Elder
 
Posts: 384
Joined: Thu Feb 28, 2008 4:00 pm
Location: GREECE

Postby jimmylegs » Wed Jun 18, 2008 3:20 pm

lol anecdote - i can't believe i was so into b12 when i first arrived on the site, yet forgot all about it. wow !!! i can't believe you're taking 5000 mcg per day!!! i think the most i ever took daily was 1000.
but yes, LS. i think b12 is important as heck too, being the main differential dx, and that we should keep ourselves upwards of 500 rather than upwards of 200 or thereabouts as the docs say. i have a big problem with labs.
dim i didn't know cyano-b12 could be pro-infl. - what are those special circumstances?
i've never looked at hubby's vittymin suggestions A - will have a look
cheers :)
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 8944
Joined: Sat Mar 11, 2006 4:00 pm

Postby LiquidSkin » Thu Jun 19, 2008 1:48 am

See, my mother had a B12 defiency to the point she had to get a blood transfusion just to get it back in her body. That was oringally what i thought I had but my Neuro says he is absolute sure I have Ms and I will not be dx other wise ever -rolls her eyes- he is an arrogant jerk.
Anyways, I will look into all the supplements you guys talk about, Thank you for your help
User avatar
LiquidSkin
Family Member
 
Posts: 40
Joined: Thu Feb 28, 2008 4:00 pm
Location: Watertown, NY

Postby DIM » Thu Jun 19, 2008 1:57 am

jimmylegs wrote:lol anecdote - i can't believe i was so into b12 when i first arrived on the site, yet forgot all about it. wow !!! i can't believe you're taking 5000 mcg per day!!! i think the most i ever took daily was 1000.
but yes, LS. i think b12 is important as heck too, being the main differential dx, and that we should keep ourselves upwards of 500 rather than upwards of 200 or thereabouts as the docs say. i have a big problem with labs.
dim i didn't know cyano-b12 could be pro-infl. - what are those special circumstances?
i've never looked at hubby's vittymin suggestions A - will have a look
cheers :)

Major Folic acid deficiency is the one, can't remember the second but if you want I can search it!
Have a read about what LEF says for B12:
<shortened url>
User avatar
DIM
Family Elder
 
Posts: 384
Joined: Thu Feb 28, 2008 4:00 pm
Location: GREECE

Postby jimmylegs » Thu Jun 19, 2008 6:53 am

LS, i had a documented b12 deficiency on my medical record when they diagnosed me. it slipped thru the cracks because my doctor's computer charts results on a graph. my deficiency result came back "<75". having a non-numeric character meant it did not appear on the graph at all.
the neuros tested me for b12 when i was diagnosed. at that time i was supplementing heavily and it wasn't working this time. i was taking tons of it and my level was 300. i told them it was probably a bad test, and they suggested i stop so they could get a clean baseline number, but i was too scared. i didn't understand back then that all my b vitamins were down *because* the 12 was down. the klenner protocol includes so many b vitamins that i'm pretty sure that's a huge part of why it had such a great effect for me, because my b12 intake finally had something to work with.
the doctors said my problem was not b12 deficiency because b12 deficiency doesn't cause brain lesions (i have the dreaded dawson's fingers). also they said my o-bands in the spinal fluid are indicative of chronic inflammation not b12 deficiency. so, the ms dx stuck.
oh and another thought - you may want to investigate zinc too. i asked for that test more than a year after dx and i was seriously deficient. not anymore - i've taken too much now and will need to back off. i was not prompt enough with my follow-up test and overdid it.
LS you're very smart to ask questions and look into nutrition. especially with a familial background issue. why was your mom's so low? did your docs give you a parietal cell antibodies test?
anyway - if i relied on my docs for nutrition advice i'd probably still be unable to type or play guitar or wash my own hair. so go to it and take matters into your own hands!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 8944
Joined: Sat Mar 11, 2006 4:00 pm

Postby jimmylegs » Thu Jun 19, 2008 6:57 am

interesting DIM. what about hydroxycobalamin? oh by the way that link points to a premarin article so i googled life extension b12 and there's an article dated december 2000. is that the one you meant?
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 8944
Joined: Sat Mar 11, 2006 4:00 pm

Postby LiquidSkin » Thu Jun 19, 2008 9:23 am

She had gastural bypass, because of a long list of medical issues she was having with her weight, and when she finished with the surgery she had cleared up her diabetes and such and she just keep getting weaker and weaker sleeping god nows how many hours a day. and she really couldnt function. she went and get test for some stuff, and she had very low iron and b12, so they keep here there a whole day to do the blood tranfusion. it was really night and day to what she was before. They told her that she should have been check before her operation because she was prolly low to begin with then bottomed out when she had the surgery.

what worries me is they test for my b12 it was like 400, but they didnt have me fast, and the doctor wont even consider anythign beside MS because I have a lesion on my spine, which he was liek only head trauma or MS could cause this,
Well I took a wooden tanto to teh head less than a year back blackout for at least 30 seconds. I got pretty banged around in Martial Arts n' Stuff, so for him to Ignore me, I just need a third opinion that isnt going to look at the test he took and go well he did test thats that, that just doesnt seem right to me.(thats what the second opinon did, one visit no new tests or anything, just oo that doesnt look like an MS Lesion but...he did all these test you must have it...-glares-)
I accept I have Ms, but I dont think I am as healthy as i could be to fight it off the way. Hence the line of quesitoning that started this topic lol
User avatar
LiquidSkin
Family Member
 
Posts: 40
Joined: Thu Feb 28, 2008 4:00 pm
Location: Watertown, NY

Postby jimmylegs » Thu Jun 19, 2008 9:56 am

craaaazy b12 deficiency has characteristic spinal lesions! they even happen in specific places on the spine! cervical (which can give you the good old lhermitte's sign) and dorsal/thoracic!!!! wow some doctors make my head spin.
mind you 400 is a pretty solid number, though 500 or 600 would be better. what units were your results in? nmol/l or pg/ml? anyway, it can't do any harm to take b12 for a few months to see if it does you some good. it needs the complex too though - b vitamins don't exist in isolation in foods, from what i understand.

http://neuromuscular.wustl.edu/nother/vitamin.htm#B12
Vitamin B12 (cobalamin) deficiency
-Clinical features
--Polyneuropathy
---Sensory change: 2° spinal or peripheral nerve lesions
-----Early: Paresthesias
-----Loss especially of large fiber modalities
-----Distal
---Motor: Later in course; Distal
---Reflexes
-----Tendon: Reduced or absent at ankles
-----Plantar: Upgoing
---Autonomic: Postural hypotension
--CNS
---Spinal cord: Earliest locus of involvement
-----Major cause of sensory & motor disability
-----Posterior column fiber loss
-----Spasticity in legs
-----Similar clinical features to N2O toxicity
---Other CNS
-----Cognitive impairment in adults: Leukoencephalopathy on MRI
-----Mental retardation or encephalopathy in childhood syndromes
-----Sensory: Reduced smell & taste
-----Gait ataxia
---Anemia: Megaloblastic; Due to reduced DNA synthesis
---Gastrointestinal: Glossitis; Diarrhea
---Fingernails: Hyperpigmented

-Testing
--Serum
---Low B12
-----Clinically significant: < 100 pg/ml
-----Suspicious: < 200 pg/ml
---High homocysteine & methymalonic acid
-----Confirm biological significance of low B12 levels
--MRI
---Hyperintense T2 lesions in posterior columns (50%)
---Lesions resolve after 8 to 12 months of therapy
--Evoked potentials
---Somatosensory: Abnormal tibial & median
---Motor: Normal in most

-Pathology
--Spinal cord
---Multifocal axonal loss & demyelination
---Localization
----- Cervical & thoracic
-----Posterior column > Anterolateral & Anterior
--Peripheral nerve: Axonal loss; Occasional ± demyelination
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 8944
Joined: Sat Mar 11, 2006 4:00 pm

Postby LiquidSkin » Fri Jun 20, 2008 7:18 am

I have a t2 Lesion, so i was also way sure i had B12 not MS but... my neuro did a spinal tap and it came back Faint, and I have plaque on the brain that could be cause of my age or it could be MS so I dunno
User avatar
LiquidSkin
Family Member
 
Posts: 40
Joined: Thu Feb 28, 2008 4:00 pm
Location: Watertown, NY

Postby jimmylegs » Fri Jun 20, 2008 7:20 am

definitely time to take some kind of action for sure. where were/was your spinal t2 lesion/s?
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 8944
Joined: Sat Mar 11, 2006 4:00 pm

Postby whyRwehere » Fri Jun 20, 2008 2:43 pm

Get another neurologist or even better a GP, which is more likely to listen to you.
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

Postby LiquidSkin » Sat Jun 21, 2008 10:22 am

"Nonspecific T2/FLAIR hyperintensity foci in the brain parenchyma with perivenular configuration s, favoring demyelination in patient's age. No acute intracranial abnormality. No
active demyelinating plaque." - Brain MRI

"Elongated fairly large central hyperintense lesion in the upper thoracic cord, T1 through superior end plate of T4, most consistent with a demyelinating plaque" - Spine MRI
User avatar
LiquidSkin
Family Member
 
Posts: 40
Joined: Thu Feb 28, 2008 4:00 pm
Location: Watertown, NY

Next

Return to Regimens

Who is online

Users browsing this forum: No registered users