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Posted: Sun Dec 12, 2010 6:01 am
by jimmylegs
wow they're wrong about the best form of vit E to take too. maybe i will have to take that link back!

Posted: Mon Dec 13, 2010 10:14 am
by elliberato
THROWING in the towel Jimmy. Went back to smokin pot in my vaporizer. Amazing how Good it feels for about 6 hours during sleep. But once it wares off i am fucked again...

Posted: Mon Feb 07, 2011 10:58 am
by Galway
When you are taking about soap in the bed for pain and spasticity, any brand of soap and any any place in the bed.
Severe pain in legs.
Thanks,

Re: spasticity

Posted: Sun Jun 23, 2013 6:47 am
by MKB325
I'm also interested in the soap thing/ What are people doing with soap? Why do you think it works? And what kind of soap are you using?

In other questions, has anyone done surgery for spasticity? Either tendon transfer or lengthening or the surgery they do to cut the sensory nerves at the spinal cord.
I'm trying to figure out something that "cures" or almost cures it and doesn't decrease strength. I did botox in my calves and hated it - it was so much harder to walk than before. Forget about the pain of spasticity - I'd rather have pain than weakness, but it seems like you have to choose. :(

Re: spasticity

Posted: Sun Jun 23, 2013 7:24 am
by jimmylegs
hi mkb, question(s) for you: have you already optimized your serum magnesium status (ie gotten your serum values up to the very top of the normal range to absolutely exclude deficiency or even mild hypomagnesemia) and are still having spasticity issues? we know mag levels are low in ms patients, but beyond that, are you taking any nutritional supplements or pharmaceutical meds that could be interfering with your mag status?

Re: spasticity

Posted: Sun Jun 23, 2013 9:12 am
by MKB325
I just emailed my naturopath physician friend to ask her about testing my Mg. I currently take fish oil, probiotics, turmeric, alpha lipoic acid, and b-vitamins, but not Mg - so that's def worth checking.

I was diagnosed in 2002, did Rebif for 3 years, then nothing for about 5 years, then methotrexate now. I imagine I'll go on Tecfedira since that's less toxic than methotrexate. I've been basically fine since diagnosis - but spasticity in left lower leg has gotten to the point where it's definitely negatively impacting my walking. So far the thing that's worked best for that is dry needling - usually keeps it under control for a couple of weeks, but the last couple of sessions have done nothing.

Thanks for any advice!!

Re: spasticity

Posted: Sun Jun 23, 2013 10:21 am
by jimmylegs
aha, ok. sounds good.

re testing, do ask for a SERUM magnesium rather than RBC. or if your naturopath insists on RBC, then do get *both* tests done. most of the studies I have been able to collect on magnesium values in healthy controls as opposed to patients have tested SERUM magnesium, so that's the most useful result for comparison to other studies.
(fyi RBC is considered better quality *but* serum - although yes, more of a broad brush stroke kind of test - is actually good enough for your purposes. especially for a first initial test. and esp if you want to compare your result to lots of others)

re magnesium and supplementing, please read the relevant pieces here (the targets and supplements subsections for specifics on mag. the bloodwork section for general info): http://www.thisisms.com/forum/post15460.html#p15460

found this sideways reference to methotrexate effects on magnesium status:

Ionized serum magnesium in type 2 diabetes mellitus: its correlation with total serum magnesium and hemoglobin A1c levels
http://journals.lww.com/smajournalonlin ... tes.5.aspx
"[exclusion] criteria included drugs or conditions that may cause low Mg levels, such as diuretics, methotrexate..."

also, fyi i can't get good detail instantly but i'm looking in the index of 'herb-nutrient-drug interactions' to see what they mention. nutrient impacts are listed for methotrexate and include vit A, various vit Bs (2,6,9,12), vit C, and iron, among other things.

Re: spasticity

Posted: Sun Jun 23, 2013 2:10 pm
by MKB325
Thanks! I will check it out!

Re: spasticity

Posted: Fri Jun 28, 2013 9:27 pm
by THX1138
I get spasms when I wake if I sleep 6+ hours. The first move I make in bed starts them.

I have found that rubbing magnesium oil on my forearm (the handiest place) when I wake causes them to subside much more quickly.

Regarding Mg testing: http://www.ncbi.nlm.nih.gov/pubmed/?ter ... clinicians

Re: spasticity

Posted: Sat Jun 29, 2013 4:07 am
by jimmylegs
how to avoid testing pitfalls.. read about the 'normal' range here. for mag and much more. http://www.thisisms.com/forum/regimens- ... tml#p15460

Re: spasticity

Posted: Tue Jul 09, 2013 10:49 am
by THX1138
Does anyone know where elliberato went??

The description of his symptoms sound very similar to mine and I know what helps me - magnesium oil.

Re: When I wake in the middle of the night, I can walk. Why

Posted: Sun Jul 14, 2013 7:31 pm
by THX1138
lyndacarol wrote:El--I think your observation of your ability to walk at night, "Interestingly when I wake in the middle of the night I can walk to the bathroom. Back to bed and by morning I am so stiff again its back to sitting." is TREMENDOUSLY significant!

I recall someone else at this website posted a similar experience – unfortunately, I cannot remember who it was. Perhaps he will come forward and identify himself?

I am impressed with the rapidity of the change in your symptom; it shows me that a dramatic improvement is possible no matter how severe the symptoms.

SOMETHING changes in your body while you sleep – what changes while we sleep? For one thing, in normal people the insulin level goes down when they are fasting overnight; but, when tested, my fasting serum insulin levels are always elevated. Hmm… Severe calorie restriction has been reported to reduce MS symptoms – I would guess that those people with starvation or severe calorie restriction have low insulin levels.

Cortisol levels change too with periods of light and dark, i.e., circadian rhythm. High cortisol levels result in high glucose levels, which then trigger high insulin levels.

What other substances change as we sleep? Please offer your ideas, people.

Re: spasticity

Posted: Sun Jul 14, 2013 7:38 pm
by THX1138
Anybody else have this waking in the middle of the night and the spasticity is way better, but in the morning, after a full sleep, the spasticity has returned?? :?: :?:

Re: spasticity

Posted: Mon Jul 15, 2013 6:34 am
by vesta
My symptoms are worse in the morning and believe it is because of poor blood circulation from the brain which causes a blood reflux (CCSVI issue) into the Central Nervous System. I give myself a TENS acupressure treatment to get things moving. A simple 30 second upper back massage will do it, or a good swim, whatever to get the blood flowing. I mention this on my blog MS Cure Enigmas.net.

“Analysing my own situation, while I am able to control an outright M.S.“attack”, any nerve symptoms which manifest imply
that blood reflux is injuring the brain/spinal cord. Mornings I have
the impression blood is stagnating in my brain which again implies some
injury. Any anxiety triggers “burning” in my legs. I can’t always
avoid stressful situations, or viral illnesses which cause the body to “seize” up. Therefore I need to use nutritional therapy to both prevent stress on the vascular system while healing a nervous system under constant assault.”

MS Cure Enigmas.net

Re: spasticity

Posted: Mon Jul 15, 2013 11:21 am
by THX1138
vesta, thanks.

Do you find that your symptoms are improved if you wake prematurely, after 4-5 hours of sleep for example? But find that they have returned after finishing sleeping for the night?

elliberato's messages earlier on this topic describe what I experience, but mine are not as severe