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Old 11-03-2008, 09:31 PM #561
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Tree I had those SX b4 i was on LDN, and even on it I still get them my right leg acted up all day today, felt like a cramp was going to come on and just hung back waiting for me to be asleep tonight, as for numbness i have been numb a long time and it bites

howdy howdy folks
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Old 11-03-2008, 10:08 PM #562
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Tree I had those SX b4 i was on LDN, and even on it I still get them my right leg acted up all day today, felt like a cramp was going to come on and just hung back waiting for me to be asleep tonight, as for numbness i have been numb a long time and it bites

howdy howdy folks

Weegot5, I had the cramping prior to LDN too. I added magnesium and it has helped somewhat. It just seems too coincidental that the pre-charley horse cramp/toe cramp comes on about the same time every morning. It eventually goes away. I thought it might have something to do w/the dosage of LDN.

Maybe one of these days the cramping will just go away for both of us
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Old 11-03-2008, 10:35 PM #563
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my doc has mentioned i quit smoking and eat more bananas to help mine, well i eat bananas but quitting smoking isnt happening, so another one of those lovely ms bs thingys. One of many I dont know if its this or that , that is hindering or helping me. trail and error I guess, hope it eases up, real soon for you
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Old 11-04-2008, 12:59 AM #564
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my doc has mentioned i quit smoking and eat more bananas to help mine, well i eat bananas but quitting smoking isnt happening, so another one of those lovely ms bs thingys. One of many I dont know if its this or that , that is hindering or helping me. trail and error I guess, hope it eases up, real soon for you

Heyah, Frank. Mebbe you could try smokin a banana?


Hehe, Sally -- I guess we're on the same diet then. Choccy and LDN!

Plus, I do accupressure on my rear end every time I sit down.
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Old 11-04-2008, 11:15 AM #565
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Did anyone else experience the following while on LDN: I get pre-charley horse like feeling in my left calf and also numbness in both hands between 3 and 6 am every morning. I have also occasionally been experiencing cramping in my toe at that time on my left foot. I might add my left leg/foot drop is my biggest problem with mobility.
That would likely be spasticity, which may or may not be related to the LDN. Sometimes LDN causes transient increased spasticity for the first few weeks (or even months) that you are adjusting to it (or a new dosage), or perhaps you may eventually determine the dosage is too high for you.

I find my spasticity gets worse in the cooler months anyway, so I have to do more stretching exercises, and I drop down to about 3.5mg for about 3 or 4 weeks till I climatize.

Staying in a certain position (like when you are sleeping), also seems to add to my spasticity. Try a 15 min nightly stretching routine; just simple exercises like foot rolls, touching your toes, etc. People prone to spasticity/spasms should do this on a regular basis anyone, but I have found myself slacking off this last year. Every time I start back up for a week or two though, the cramping stops.

As far as the numbness in your hands, that is just happening in the morning . . . that is likely due to the position you are sleeping in (and spinal lesions). I have that too, and my neuro said it is "like" l'hirmittes, whereby certain positions set it off.

Do you find the "excess" tingling/numbness mostly lets up after you've been up for 10 - 15 minutes? If so, try sleeping in a different position, or losing/gaining a pillow or two. I have to keep my back and neck completely straight to mostly avoid that sensation when I wake, and I get it when I sit a certain way in my recliner too. It always lets up quickly though, once I am not longer in the "trigger" position.

Cherie
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Old 11-04-2008, 12:30 PM #566
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Rochelle - Smoking bananas? Acupuncture on your rear by sitting down? You are so silly! I like the chocolate part of the recommended treatment.

I am getting proactive about changing my medication from Avonex to LDN. My neurologist recently advised that I get a 2nd opinion on my MRI from last month. She is uncertain of some of the abnormalities she sees in the brain...they could be part of the MS, but they could also indicate "something new" to go with the MS. She even used scarey words like "brain tumor".

I will be seeing the Chief of Neurology for MS up North in Salt Lake City on November 19th. There are only general neurologists where I live. I'm getting all of my questions ready. The FAQ on gazorpa.com were very helpful.

Not quite sure about the Acupuncture...more needles?! Has anyone tried it?

I wanted to thank all of you for answering my questions. I'm really not trying to be a pain, and I appreciate your patience with me.
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Old 11-04-2008, 01:57 PM #567
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That would likely be spasticity, which may or may not be related to the LDN. Sometimes LDN causes transient increased spasticity for the first few weeks (or even months) that you are adjusting to it (or a new dosage), or perhaps you may eventually determine the dosage is too high for you.
Your response confirmed what I thought might be happening. I started at 3.5 then went to 4.0, and dropped back down to 3.5 because of spasms. I'll have to determine if it's LDN being too high or spasticity I'll have to live with.

Quote:
Staying in a certain position (like when you are sleeping), also seems to add to my spasticity. Try a 15 min nightly stretching routine; just simple exercises like foot rolls, touching your toes, etc. People prone to spasticity/spasms should do this on a regular basis anyone, but I have found myself slacking off this last year. Every time I start back up for a week or two though, the cramping stops
.

I do stretch before going to bed; but I do admit, not for 15 minutes. I'll try doing it longer.

Quote:
Do you find the "excess" tingling/numbness mostly lets up after you've been up for 10 - 15 minutes? If so, try sleeping in a different position, or losing/gaining a pillow or two. I have to keep my back and neck completely straight to mostly avoid that sensation when I wake, and I get it when I sit a certain way in my recliner too. It always lets up quickly though, once I am not longer in the "trigger" position.
You are absolutely right about sleeping positions. I have found I have to sleep on my back and keep my left leg perfectly straight to alleviate the pre-charley horse spasms. It's difficult to sleep any other way with your left leg straight. I'm trying though.

Your advice and remedies are always appreciated. You are a wealth of info.
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Old 11-04-2008, 05:42 PM #568
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my doc has mentioned i quit smoking and eat more bananas to help mine, well i eat bananas but quitting smoking isnt happening, so another one of those lovely ms bs thingys. One of many I dont know if its this or that , that is hindering or helping me. trail and error I guess, hope it eases up, real soon for you

I eat more bananas too. A story about smoking and MS. I was a smoker. My presenting symptom was loss of vision in my right eye. I thought I wasn't getting enough oxygen and that was the reason I lost vision. It was logical to me at the time So I quit smoking. A few months later I was diagnosed with MS. I was tempted to go back to smoking (since that wasn't the reason for my vision loss) but I didn't. I joke that I quit smoking for nothing

You are so right......trial and error.
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Old 11-04-2008, 07:38 PM #569
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Rochelle - Smoking bananas? Acupuncture on your rear by sitting down? You are so silly! I like the chocolate part of the recommended treatment.

I am getting proactive about changing my medication from Avonex to LDN. My neurologist recently advised that I get a 2nd opinion on my MRI from last month. She is uncertain of some of the abnormalities she sees in the brain...they could be part of the MS, but they could also indicate "something new" to go with the MS. She even used scarey words like "brain tumor".

I will be seeing the Chief of Neurology for MS up North in Salt Lake City on November 19th. There are only general neurologists where I live. I'm getting all of my questions ready. The FAQ on gazorpa.com were very helpful.

Not quite sure about the Acupuncture...more needles?! Has anyone tried it?

I wanted to thank all of you for answering my questions. I'm really not trying to be a pain, and I appreciate your patience with me.

Not acupuncture, silly: acupressure!

Sorry about your scary MRI. I hope it turns out to be nothing to worry about.

Nobody said you were a pain, did they? We like discussion around here, so keep asking!

I'll go check out gazorpa--hadn't heard of that website. tks!
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Old 11-05-2008, 04:26 PM #570
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Lightbulb Connecting more dots?

From the FAQ's at www.gazorpa.com it says:

How does LDN work?

It is believed that LDN briefly obstructs the effects of brain endorphins (the brain's natural
painkillers). Sensing an endorphin deficit, the pituitary signals for increased production of
endorphins, which re-balances the immune system, thus reducing the activity of the MS. The effect
lasts around 18 hours.


My doctor told me that my five pregnancies kept the MS at bay because pregnancy suppresses the immune system. Since the two theories don't agree, I decided to check out the "endorphin" connection. What about endorphins during pregnancy? In article on www.pubmed.gov it said:

Most studies of endorphin concentrations in pregnant women show that these are highly elevated.


Did I connect some dots?...This would add additional support to Dr. Bihari's theory on LDN. Please don't call me crazy, LOL

Just an idea...any thoughts?

Watch out...she's trying to doctor herself!
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