Types of MS Pain..Please describe yours

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Artifishual » Mon Jan 12, 2009 6:30 am

Dixie_Amazon wrote:My pain feels like burning pins and needles. Usually in patches in various locations, but I have had episodes with it all over from the neck down.


Hi ya Dixie!! Me and you are practically neighbors :D I live in the Beaumont TX area!!! Howdy :wink:
Artifishual
Family Elder
 
Posts: 645
Joined: Sun Mar 09, 2008 4:00 pm

Advertisement

Postby Dixie_Amazon » Mon Jan 12, 2009 7:31 am

Hi neighbor! Image

Enjoying the bouncing around weather?
Image
Dennise

In diagnosis limbo.
User avatar
Dixie_Amazon
Getting to Know You...
 
Posts: 11
Joined: Sat Jan 10, 2009 4:00 pm
Location: Baton Rouge, LA

Postby Artifishual » Mon Jan 12, 2009 10:49 am

yeah it's crazy isn't it?!?!?! one day 6" snow, the next sweating your butt off and this morning it was like 30 degrees. Really good for the old ms, LOL :?
Artifishual
Family Elder
 
Posts: 645
Joined: Sun Mar 09, 2008 4:00 pm

Postby tt89 » Mon Jan 12, 2009 8:35 pm

Happy To Report that Im feeling better!!!!!!
I mean could it really be the Magnesium that is doing the trick. I can't explain it. Sure I still have MS, sure some of the stuff is there that reminds me I have it BUT overall my legs feel better and I feel better. I walked two times today.....and other than my sore ankle/heel ( which I see the doc for on thursday), I feel GOOD!

Just needed to report this

:wink: Thanks Jimmylegs!!!!!
User avatar
tt89
Family Member
 
Posts: 97
Joined: Tue Aug 12, 2008 3:00 pm
Location: USA

Postby jimmylegs » Tue Jan 13, 2009 6:30 am

fantastic tt!!! keep up the good work :D :D :D

glad you're here early dixie, and taking control. can you tell me if you've had any bloodwork done that has to do with nutrition?

at any rate, even without a diagnosis it sounds to me like you can get some improvement with supplements.

ginkgo will likely help some with the brain fog. i get that a bit sometimes too, and the gingko helps me.
do you drink lots of water and/or herbal tea? if so, do keep it up!

the essential fatty acids are also an excellent idea. fish oil makes me gag too. i found a brand of 1000mg capsules which i keep in the fridge, and i take it right before i go to sleep. it's not ideal, but if it repeats on me, at least i never know about it ;)

okay this next bit will be about B vitamins for nerve function, plus D3 and associated vits and mins for immune function and pain relief.

B-COMPLEX
i had carpal tunnel too. b vitamins are good for that, and for sensory problems too. the b-complex is used at high dosages in an old 70s protocol by klenner. without getting into the whole klenner regimen, you can megadose b-complex for a week and then level off.

in 2006 i modified the klenner protocol for my own use and ignored some of the details, even so it was one of the highlight moments of turning my symptoms around. good stuff. before that i had taken only b12 and it had worked to resolve numbness for a couple of years but then it stopped working. i have decided that it was because the rest of my b-complex was so depleted the b12 had nothing to work with. once i added the rest, it was miraculous.

to megadose b-complex approximately a la klenner, pick up a bottle of b-50 complex. take 2 with each meal for a week. then you can drop back to one or two b-50s per day.

VITAMIN D3
how much vit D do you take daily? you need to get the serum level up over 100nmol/L [40ng/mL] to minimize MS risk. there is published peer reviewed research on that. you might need a megadose to get you up into that range, then a maintenance daily dose that will vary depending on where you live and how much time you spend outside stark naked ;)

my hospital says to jump 50nmol/L fast, take 50,000IU per day for 10 days. researcher vieth out of toronto says 4000IU per day is a good daily maintenance dose with no toxicity concerns. if you're out in the sun a lot in the summer, you can probably drop the daily to 2000 but bump it back up to 4000 in the winter (this is for if you live north of 40).

it is important to balance your d3 intake with 1200mg calcium, 600mg magnesium, 50mg zinc, and vitamin K.

MAGNESIUM
magnesium is very important in relieving symptoms in ms. calcium and magnesium are responsible for many things but one is the function of muscles, their contraction and relaxation. if your muscles are too tense, magnesium is very likely to help. i can't even keep track any more of how many people here and in my personal life have been helped with all kinds of diff symptoms using mag.

magnesium gets eaten up by d3 supplementation so you need to take some of your daily mag away from the d3. if you take one at bedtime it can help send you off to sleep. i suspect it will help with the pain at your ribcage, which sounds like our old pal the MS hug.

magnesium is hard to absorb so if you take too much at one time you'll be running for the loo. find as soluble a form as you can, like mag citrate. also get as much as you can from food sources.

ZINC
zinc is statistically lower in ms patients and it's VERY important. looking at the research, which you can find referenced elsewhere here on thisisms, women with ms average 12 (10-14) .[... i think the units are nmol/L there EDIT: nope the units are µmol/L]. healthy people have levels just over 18. i have read about excess symptoms starting up around the 22 mark. my lab says the normal range is 11.5-18.5... don't be fooled by the term "normal" range.

VITAMIN K
here on the forum, thanks to cureorbust, we are starting to pick up on the importance of vitamin K in the d3 balancing act. "high dose" d3 supplementation can interfere with vitamin K. i haven't checked yet on what amounts are needed to deplete K but i'm sure we'll get to it!

yesterday for the first time i saw a bottle of vitamind3 supps in the store, with vit K in it too. one bottle had 100mcg vit K blended with the d, and the other had 120mcg of vit K. sadly i didn't check the amount of d in each pill, but one was a jamieson product so that will be easy to check.

* * *

last of all to touch on antioxidants, the klenner protocol is big on antioxidants like C and E. besides being antioxidants, C helps you use the other nutrients you consume, and E is really important for the health of your blood vessels.

if you haven't already, you may soon read about the focus on vascular concerns in ms. the klenner protocol does not mention this, but it does discuss muscular and liver damage when not enough vit E is present.

VITAMINS C AND E
you can take a couple grams of C per day (klenner suggests up to 10g!), and for the E, the klenner protocol advises 800 IU with each meal. i did this for 3 days with no ill effects, and i don't *normally* take E every day but right now i'm taking 800IU every day.

i've read studies in rats looking at toxicity and they feed them 6000IU vit E per kg body weight every day. so if you decide to go for a short burst of E, i suggest trying to find a bottle of 400IU capsules containing a blend of 4 tocopherols and 4 tocotrienols. you can take 2 with each meal for a week and then back off to one per day. that high dose regimen of 2400 units per day for a week works out to in the neighbourhood of probably 20-40IU/kg/d depending how much you weigh.

whew! holy moly it got late - better split for now take it easy :)

I have dizziness, brain fog and some girdling pain in my ribcage. Oh and fatigue, how could I forget the fatigue?

After MRIs (non-specific white spots), EEG (slowing of some parts of the brain) and a Nerve Conduction study (carpal tunnel in both hands, nothing else. My Neuro is taking a wait and see position. I am thinking getting a second opinion.

I am interested in supplementation. I have already started vitamin D. My Endo tested me for that and I was very low. Fish Oil makes me sick but I did start on EFAs. I also take B-12 and am thinking of adding Ginko.
Last edited by jimmylegs on Thu Jan 15, 2009 3:09 pm, edited 3 times in total.
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9207
Joined: Sat Mar 11, 2006 4:00 pm

Postby Dixie_Amazon » Tue Jan 13, 2009 7:32 am

Jimmy Legs, thanks for all the info.

I have a great endo my dermatologist referred me to and he has done lots of blood-work for my Metabolic Syndrome and Hypothyroid (that my PCD swore I didn't have) which included testing for Vit. D. Mine was very low so he prescribed a weekly high dose of D for a while and now I am taking 2000 iu. daily. I have an appointment next week and I will find out what my current levels are. I am sure if I ask him he will test my B12.
Dennise

In diagnosis limbo.
User avatar
Dixie_Amazon
Getting to Know You...
 
Posts: 11
Joined: Sat Jan 10, 2009 4:00 pm
Location: Baton Rouge, LA

Postby notasperfectasyou » Tue Jan 13, 2009 8:04 am

I have also learned that a lot of folks take Neurontin, which is an anti-seizure drug tha thas been found to be an effective nerve pain reliever.
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby jimmylegs » Tue Jan 13, 2009 9:55 am

here is a list of nutrients that are depleted by neurontin (gabapentin). if you consider this drug for pain relief please also consider that it will subdue pain without addressing any potential underlying nutritional causes for pain or other neurological symptoms.

this is from the sleep issues topic

nutrients depleted by gabapentin
-vitamin b6
-vitamin b9(folic)
-vitamin b12
-vitamin d
-vitamin e
-vitamin k
-biotin
-calcium
-L-carnitine

source (includes reference list)
http://www.publix.com/wellness/notes/Di ... n#Dni-Supp
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9207
Joined: Sat Mar 11, 2006 4:00 pm

Postby Wallwalker » Tue Jan 13, 2009 3:17 pm

This isn't a pain as such but its a major "pain." Restless legs- had all my life but as mobility decreases its gone crazy!!! Have it now despite ropinerole (anti parkinsonian). So tired, can't sleep, read. watch TV..... aagh. Any ideas? So many supplements my urine is used to repair alloy wheels so look elsewhere. Cheers

WW :evil:
User avatar
Wallwalker
Family Member
 
Posts: 28
Joined: Thu Jan 01, 2009 4:00 pm
Location: UK

Postby Loriyas » Tue Jan 13, 2009 4:19 pm

Clonazepam helps me a lot.
Lori
Loriyas
Family Elder
 
Posts: 575
Joined: Sun Apr 02, 2006 3:00 pm
Location: Naples, FL

Postby notasperfectasyou » Tue Jan 13, 2009 6:11 pm

jimmylegs wrote:here is a list of nutrients that are depleted by neurontin (gabapentin). if you consider this drug for pain relief please also consider that it will subdue pain without addressing any potential underlying nutritional causes for pain or other neurological symptoms.

this is from the sleep issues topic

nutrients depleted by gabapentin
-vitamin b6
-vitamin b9(folic)
-vitamin b12
-vitamin d
-vitamin e
-vitamin k
-biotin
-calcium
-L-carnitine

source (includes reference list)
http://www.publix.com/wellness/notes/Di ... n#Dni-Supp


Thanks Jimmylegs. I like to trace these things back to articles. I've done this for Vit-D and will post link tomorrow. The other one I'm interested in is B-12. I'm having trouble tracing that back to a journal. Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby jimmylegs » Tue Jan 13, 2009 8:10 pm

hi napay here's a thready connection between anti-epilectic drugs, bone mineral density, b12, folate, and homocysteine. the abstract doesn't make things very clear.
http://linkinghub.elsevier.com/retrieve ... 1106001737
this one's about AEDs reducing folate in pregnancy...
http://www.theannals.com/cgi/content/abstract/32/7/802
general folate depletion, homocysteine elevation, with AEDs...
http://www.pubmedcentral.nih.gov/articl ... tid=320966
and i'm sure there's that folate-b12 connection out there but i can't find anything just yet :)
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9207
Joined: Sat Mar 11, 2006 4:00 pm

Postby notasperfectasyou » Tue Jan 13, 2009 8:37 pm

Here's the one I found on Vitamin-D:

"The effects of long-term antiepileptic drug (AED) therapy on bone metabolism are well established and span the spectrum from osteomalacia to osteoporosis and to high bone turnover with normal bone density." ..... "It was recently recommended that patientsshould be treated with an escalating regimen of vitamin D, with doses varying between 400 and 15,000 IU/day, depending on the type of AED induced osteopathy."


Two randomized vitamin D trials in ambulatory patients on anticonvulsants: Impact on bone
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby jimmylegs » Tue Jan 13, 2009 8:50 pm

was that from the ref list on publix, or elsewhere? i haven't even check the refs yet lol just randomly scouting around. that's all for this eve, tiiired.
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9207
Joined: Sat Mar 11, 2006 4:00 pm

Postby jimmylegs » Thu Jan 15, 2009 7:05 am

hey napay did you check out the zinc ms boys girls controls thread? i kind of covered it here but added some new info on that thread recently too.

jaded, did you get back on your b-complex and are your feet feeling better?

wallwalker, personally for RLS i would want to have a look at your iron status, but if you don't want to go there... ropinerole apparently depletes potassium. i am scouting for a study to back up that assertion. anyway because of the potential depletion issue, i looked for nutrition links between RLS and potassium and here you go:
http://www.pubmedcentral.nih.gov/articl ... id=1002979
In a survey of outpatients at the Denver Veterans Affairs Medical Center for common leg symptoms--515 questionnaires returned in a 3-week period--56% reported nocturnal leg cramps, 29% reported the restless leg syndrome, and 49% reported symptoms of peripheral neuropathy. Only 33% of patients had no symptoms relating to their legs. Patients often did not report these symptoms to their physician but were more likely to do so if the symptoms were frequent. Conditions especially related to leg symptoms were hypertension, peripheral vascular disease, coronary artery disease, cerebrovascular disease, kidney disease, and hypokalemia. Most patients did not receive effective therapy for these symptoms.

so, hypokalemia, might not hurt to have a look at your potassium status.
lucky for you, potassium supplements are useless since the amounts are usually too small. say you find a 100mg supplement. well you probably need 4000mg per day. so instead of pills you could try pounding lots of banana-filled smoothies and a bunch of swiss chard every day with dinner. good luck!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9207
Joined: Sat Mar 11, 2006 4:00 pm

PreviousNext

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users

cron