Spasticity, again...

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Spasticity, again...

Postby sou » Sun May 30, 2010 1:05 pm

Hi all.

I have leg flexor spasticity interfering with my movement. I believe it just can't ever go away. Here is what I have tried:

- Physical therapy
- Baclofen
- GABA powder/capsules
- Magnesium
- Neurontin
- Lyrica
- CCSVI treatment (not for spasticity, I just mention it)

I haven't found anything really helping at all. Big words, useless drugs, inadequate and stupid physicians looking for their precious money in my muscles. The next steps:

- Leg amputation?
- Rhizotomy?
- Tendonectomy?

Botox only over my dead body! I am not giving a cent for yet another ineffective "drug" that may last for 1 month and improve my walking speed by 1 mm/hour (0.04 inches/hour). Ok, 2 mm/hour (0.08 inches/hour)!

So, what is next?

I have found that TENS could temporarily improve spasticity. (http://en.wikipedia.org/wiki/TENS)

I am afraid of the word "temporarily". Do they mean some usec? Some msec? Some sec? Some hours? How temporarily?

In addition, swimming helps a lot, but this is because the water relaxes the muscles. I can't have a pocket swimming pool to do what my CNS ought to do. Does that help the CNS? Nope!

So anything practical? (Practical is an improvement of speed > 0.5 m/sec lasting for more than 12 months) If not, I demand all these super dooper hyper knowledgefull "doctors" I-make-money-from-your-pain-without-helping-you-at-all-do-you-like-my-new-car-asshole to stop making false claims to sell their product.

Any success stories so far?
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Postby LR1234 » Sun May 30, 2010 1:33 pm

Maybe some drugs that can improve blood flow?

Gingko
Niacin
LDN??
Circulation booster?? (like a tens machine for the feet)
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Postby jimmylegs » Sun May 30, 2010 1:51 pm

sou, if i may ask, what form of magnesium did you try, and at what dosage per day? did you combine it with potassium at all? and on that note, do you get 4500mg of potassium per day in your diet?
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Postby sou » Sun May 30, 2010 2:49 pm

Sorry, I forgot.

2x250 mg tablets magnesium. I used to take potassium but it did not have any effect, really, apart from making me visiting the toilet for urination. Somehow, I doubt that my body has run out of magnesium. I take it for more than a year now.

I think that neurologists should just shut down their businesses. I read at the Oxford journal that there is a debate about that. They can't cure anything and pathologists should take over their field.
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Postby sou » Sun May 30, 2010 2:54 pm

LR1234 wrote:Maybe some drugs that can improve blood flow?

Gingko
Niacin
LDN??
Circulation booster?? (like a tens machine for the feet)


I have taken the top 3. No significant change, anyway. Dead end here. I can't think of any biological mechanism that can improve nerve conduction or regeneration. Axons can't carry signals without myelin. The CNS can not regenerate. The evolution has created mechanisms of replacing missing body parts in reptiles but there are no animals whose CNS can regenerate. Thus, it would be easier for a missing leg to regrow than a neuron to regenerate its axon inside the CNS.

Don't mention aminopyridine. I said improving nerve conduction, not killing the remaining neurons. Over my dead body, once again...

Ah, and I forgot. Intrathecal Baclofen. Thank you my dearest neurologist, but when I say that I want to get rid of spasticity, I mean to walk normally, not exchange it with weakness and a Robocop super device with flashing lights. Despite being subhumans with MS, most of us paradoxically want to have a level of dignity.
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Postby shye » Sun May 30, 2010 5:58 pm

I'm with Jimmylegs--check a nutrition chart to find out your intake of potassium from your food, then supplement for the difference between your intake and 4500 to 5000 mg.
Also, do likewise with calcium (RDA is 1000-1500, depending on age and sex).
Also do likewise with salt--need about 2400 mg per day.
Taking Mg without regard to potassium, calcium and salt intake affects nerves and muscle adversely--you need a ratio--and you need them all.
Spasticity can result from imbalance.
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Postby jimmylegs » Sun May 30, 2010 6:23 pm

hi sou. what form of magnesium was it? it could have been a bad one for absorption just for starters. not to mention you could be ingesting something else that causes magnesium levels to drop either through malabsorption or increased elimination.

you could think about having your level tested perhaps. here's a link to a post where i made a table to compare some of my before and after levels for magnesium and a few other things. it includes a link to and quote from a study talking about the reference range for magnesium.
http://www.thisisms.com/ftopicp-56317-p ... html#56317
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Postby sou » Mon May 31, 2010 1:26 am

Magnesium acts at the level of the muscle. Do we have any studies about it being helpful?

Potassium is immediately excreted by the kidneys. How can that have any difference?

I don't think I can afford all this testing only to find myself at yet another dead end. If spasticity could be treated, I don't think that most of us would be in wheelchairs.

And what about the CNS? How can this be fixed? It simply can't, no matter what we do. It is easier for a cut leg to regrow than a CNS to repair. Actually it does have some repair capacity but it would take some billion years. This is only for neurologists to give hope to the subhumans daring to want to walk and live a life in dignity despite their subhumanity.
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Postby jimmylegs » Mon May 31, 2010 4:06 am

why yes there are extensive studies on magnesium and spasticity. here's the first result on a simple google scholar search for
magnesium spasticity
and it just so happens to be about a patient with MS.

http://www.direct-ms.org/pdf/NutritionM ... ticity.pdf
The effect of magnesium oral therapy on spasticity in a patient with multiple sclerosis
The effects of magnesium glycerophosphate oral therapy on spasticity was studied in a 35-year-old woman with severe spastic paraplegia resulting from multiple sclerosis (MS).We found a significant improvement in the spasticity after only 1 week from the onset of the ...

more reading
Magnesium Deficiency in Multiple Sclerosis.. The MS-Magnesium Connections
http://www.nhfw.info/magnesium.html

http://ods.od.nih.gov/factsheets/magnesium.asp#h4
Magnesium deficiency is also associated with low levels of potassium in the blood (hypokalemia) [1,19-20].

personally, any time i want a test that is not covered by insurance (there are only a couple of those that i've run across so far), it costs me in the range of 30 - 35 CDN.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby lyndacarol » Mon May 31, 2010 7:14 am

sou--I admit that my ideas are unconventional; after all, I think that excess insulin plays a key role in MS. Likewise, I think muscles and muscle tone are extremely important to the MS condition.

You listed Physical Therapy among the treatments you had tried; specifically, you mentioned TENS as possibly helping spasticity. I have not tried TENS, nor have I tried Neuro-Muscular Electrical Stimulation (NMES), but Neuro Stim (according to Dr. Terry Wahls) is supposed to reduce or eliminate spasticity. This therapy is most common among athletes in order to improve the muscles. Perhaps it is worth giving it a try.
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Postby jimmylegs » Mon May 31, 2010 3:13 pm

oh weird, shye somehow i missed your earlier post - good one.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
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info: www.whfoods.com, www.nutritiondata.com
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Postby endms » Mon May 31, 2010 7:34 pm

You mentioned CCSVI treatment did you have the liberation treatment and it didin't help the spasticity?
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Postby sou » Tue Jun 01, 2010 10:34 am

Perhaps the restoration of proper oxygenation to the spinal cord is responsible for some reduction of ankle clonus but, in general, I doubt it can do anything for repairing the already present damage of the CNS.
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Postby laura383 » Thu Jun 03, 2010 1:19 pm

I had bad hand spasticity for some months before I ran across the direct-MS website and started taking the calcium and magnesium. Now my hand is much more flexible.
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Postby flautenmusik » Thu Jun 03, 2010 4:02 pm

JL- what form of magnesium do you think gets absorbed the best? I was told to take magnesium citrate.... but it really makes me run for the bathroom. 8O
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