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Kenny H

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Joined
May 22, 2008
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22
Reason
DX UMND/PLS
Diagnosis
02/2005
Country
US
State
RI
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Providence
A couple of weeks ago, I did one of my famous attempts at acrobatics [I fell]. I experienced pain in my shoulder and upper arm every night to the extent that I could not sleep. I went to see a very good friend of mine who is an orthodpod. He diagnosed it as a rotator cuff injury. He said lets try 500mg of Anaprox, twice a day for a couple of weeks and see what happens...No cigar. So, the next step was that he injected my should with cortesione [a steroid]. Well, not only did it cure the shoulder pain, but I swear that for a couple of days, my PLS symptoms sure seemed better. Placebo effect or the real deal?

Any of my fellow PLSr's have any experience with treating this with steroids?

Kenny
 
Kenny,

A couple of years ago I performed the same acrobatic feat. Tore the rotator cuff. Went though physical therapy, didn't work. Ended up with surgery. Hope yours heals better than mine.

Anyway, about a year and a half ago, I was experiencing some really bad lower back pain that also shot through my hip. It was probably brought on by the way I used my cane. Anyway, my ortho sent me to the the pain clinic to get a series of four cortesione shots in my lumbar area. It not only didn't relieve any of the PLS symptoms, it didn't even help my back. My back never got any better until I graduated from the cane to the walker. But who knows, maybe the cortesione will help you. As we've said many times on this board, everybody is different and everyone reacts to drugs differently. Good luck.
 
Steroids are fine for some Pain BUT coming off them is not real good .For Instance Prednisone is really really great but the side affects .Can change your life forever . I thaught at one time PLS or what i have might be Autoimmune so i ask My Neuro if he thaught i could try it he said you wont like me anymore ,because the side affects are not good and it may never help you . Geo
 
I'm up in the air on this one. I recently had a steriod injection in my right knee and it did seem to improve my PLS for a very short time. I don't know if it was a mental thing because I was thinking more about my knee than my PLS? Steriod injections are localized therefore, I wonder how much of the drug actually circulates in the body?

I take creatine on a regular basis and it really seems to improve my PLS. I walk alot easier and I feel more grounded and balanced. I asked my Neuro about it on my last office visit. He said he couldn't comment or endorse it because it's not approved by the FDA.
 
TxRR,
I had been contemplating taking Creatine. I asked my neuro what she thought. She saw no problem in takiang it, but didn't know if it would do any good. What is the daily dosage you find is helpful?
 
Cant Quote No Protocol

I'm up in the air on this one. I recently had a steriod injection in my right knee and it did seem to improve my PLS for a very short time. I don't know if it was a mental thing because I was thinking more about my knee than my PLS? Steriod injections are localized therefore, I wonder how much of the drug actually circulates in the body?

I take creatine on a regular basis and it really seems to improve my PLS. I walk alot easier and I feel more grounded and balanced. I asked my Neuro about it on my last office visit. He said he couldn't comment or endorse it because it's not approved by the FDA.

You notice something familiar about not quoting ,you would think you would get something like ,you know i dont know .Geo
 
Hi Judith,

There are many different types of creatine (ex. Creatine Ethyl Ester, Creatine Monohydrate, Kre-Alkalyn). I could go on and on about the difference between each one.

The bottom line is after trying many brands and types I found that Creatine Ethyl Ester is the best. It comes in pill form which eliminates any cramping, bloating or diarrhea associated with the powder form. It also provides the best absorption. I use the "Axis Labs" brand. You can purchase it cheaper on the internet. I purchase it from a reputable web site called discountanabolics.com for $29.95 (Qty.396 capsules).

The dosage is as such:

3-capsules equals 2250mg of Creatine Ethyl Ester.

Take 2-4 capsules with 16 oz. of water with first meal.
Take another 2-4 capsules with 16 oz. of water with meal 4-6 hours later.


I recommend drinking atleast 80-120 ounces of water a day to avoid de-hydration.

Hope this helps.
 
Creatine Monohydrate worked for me. Container came with scoop to use to mix with juice. Forget the size it was but could have been about a teaspoon.
AL.
 
Al,

When you say that creatine mono worked for you, did you mean that you noticed a change from when starting it?

By the way, how much do you take?

My mom was taking the powder form but I don't know if it was esther or mono.
 
When I first went to SBrook, one of the docs suggested 400 units Vit E, 120-200 units CoQ10 , 1000 of Vit C and I think the spoon was 5ml of creatine momo mixed in juice. I did seem to progress slower back then. Went off them when doing a couple of trials. Think I need to get back on them.
AL.
 
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Thanks,
I think I will try some Creatine and see how it works for me.
 
TxRR,

FYI - I have been shoping online at vitacost.com for years. They are reputable too. If you're looking for more of a discount, they have Axis Lab Creatine Ethyl Ester (396 caps) for $26.99. s/h is $4.99.
 
Thanks Judith.

I am always looking for a better deal. I will check them out.
 
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