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Old 09-29-2010, 05:20 PM #21
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Default Stiffness anyone??

I don't remember Stiffness mentioned in any of the brochures on MS symptoms, but I understand its common.

I've been doing Yoga off and on for 15 years. While I'm certainly not the most flexible and will never be able to sit in the Lotus position, I can do the majority of the basic poses and get a lot out of it.

I noticed recently that I don't have the same flexibility as I did only a month ago! It seems every night my left side tightens up more. I can bend sideways at the hip on my left side and almost touch the floor. Bending to the right is quite different. I'm not even near the floor!

I keep hoping its temporary and will improve, but it has not. In fact, its gotten worse: first just my left shoulder, now my whole left side. My entire left side feels tight and shortened.

Other than Yoga and swimming, any ideas on keeping your flexibility?
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Old 09-29-2010, 06:50 PM #22
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Stiffness in MS is also called "spasticity".

I get that in my feet and legs. In my feet it makes my toes hurt and feel stiff. In my legs, it basically causes muscle spasms that give me Charley Horses From Hell while I'm sleeping. My feet feel like they're trying to kick me in the butt with my heels.

I also get the spasticity in my ribs. The ever infamous MS "Hug". It's a horrible symptom. It really caused me a lot of pain earlier this summer. Hated it! Literally felt like I had a giant python wrapped around my ribcage trying to squeeze me to death. Hurt like heck!
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Old 09-30-2010, 09:57 PM #23
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Default My aspirin saga

Not particularly related to MS, but I have another disease with high platelets and red cells, and I am supposed to take a Baby Aspirin a day.

However, even that hurt my stomach. I can get less symptoms if I powder the aspirin, mix it up in thick body cream, and rub it anywhere on my body.

We know this works because it did thin my blood enough so that when I had
acupuncture the needles made me bleed, which the acupuncturist said was
unusual. It happened every time I had the acupuncture. He said it meant by blood was thin.

If you take a thinner like aspirin you should take into account any other thinners you are on. These include Vitamin E, garlic pills, green tea. I find
I had to cut way back on green tea since I've been taking aspirin rubbed into skin.

My platelets are so high it would scare you, and I am threatened with Interferon as a possible remedy, (Intron A, not the INtron B which is given for MS). But they say it can cause flu like symptoms and depression bad enough to give suicidal thoughts. The cutting back of the thick blood can
reduce chance of stroke.

My arteries are clear, but I have microvascular problems in my toes. It
is called Erythromelalgia. My feet are numb and sometimes hurt a lot. I
fell down stairs in May and broke my kneecap in part because of this. Three
months in a rehab, and now home and very careful with stairs.

Blessings

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Old 10-01-2010, 07:39 AM #24
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every now and again, my platelets go out of whack. just jump high for no reason. a couple of weeks go by, and back to normal they go. No one has ever been able to explain it.
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Old 10-01-2010, 01:47 PM #25
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Mariel that's a great idea! Topical!
I stopped using it since I got sick last Tuesday and after everyone drilled in my head it's like taking battery acid pills. Was all my mother gave me when child.

Back to thick a.m. blood. Does it make sense that thicker morning blood (or thick blood in general) would aggravate a ccsvi condition therefore thinning it would show improvement? How could it not.

So let's have some neurotalk's members platelet count. I'm 320-400k range. WIll get it checked again Tues after my vein's prepped for Tysabri.
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Old 10-03-2010, 07:06 PM #26
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Looking through my XP harddrive, reading notes I had saved. Had to paste it here cause I say it's related-

In 2002, neurologist Dr. Scott Zamvil of UC San Francisco gave atorvastatin (Lipitor) to about 100 mice with an MS-like condition. The drug alleviated symptoms and kept the mice from getting worse.
In an upcoming trial of 152 patients at 14 medical centers, people in the early stages of MS will be given Lipitor and tracked to determine whether the drug can slow or even halt the disease.
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Old 10-03-2010, 10:52 PM #27
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http://www.drugwatch.com/news/2010/0...ple-sclerosis/
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Old 10-03-2010, 11:13 PM #28
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Default my platelets

My platelets range from 850,000 to over a million. My red cells are also high, going up to 46.5 if I don't have a phlebotomy once in a while (every few months). White cells are only slightly and insignificantly high.

Eddie, your platelets are in what is considered a normal range. If they go up to 450, then you can ask about testing to see if there is a reason other than
inflammation. A standard CBC blood test should do the trick.

My platelets were listed as High when they were at 450,000 every test for two
years. I asked why, and was told it was Essential Thrombocythemia. This
was changed to Polycythemia Vera when red cells also started to rise.

A few people have symptoms even at your level, if they have ET or PV, but
it is more likely the numbness is due to...what was that again?....MS?

But I know by now that I and most docs are ignorant in many ways. Have
a blood test and ask what your platelet level means, and go to a hematologist if you want a more closely focused answer. EVen hemos disagree about what is normal, so expect the same difference of opinion one finds among neurologists.
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Old 10-04-2010, 03:32 AM #29
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wow i had no idea blood platelet levels are involved with ms. i am a total newb about it though, i have lots to learn i guess. stiffness in my right arm and hand is always worse in the morning for me as well.

btw people of earth,hello!
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Old 10-04-2010, 04:40 PM #30
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Default To Clark

Clark, I do not know if people with MS have or do not have platelet problems.
Mine are high due to another disease.

However, Dr. Swank, one of the premier researchers on MS, believed we had
sticky blood. I think he thought it was the red cells rather than the platelets which stuck together and didn't move as well as those of others.

He tested my blood years ago, before I had Polycythemia Vera, the disease which has raised my platelets and red cells. He said my blood cells (I presume
red) moved slower than average, and that meant my previous dx of MS was
correct. He believed that eating saturated fat slowed the movement, and put his patients on the Swank Diet, which is one very low in saturated fat. There are two books on it he wrote with his nurse, available at most libraries, or at least they used to be. Well worth reading to find an interesting theory about
MS....I would say, now, a theory applying only to SOME with MS, which seems to have different types.

The Swank diet was VERY helpful in lowering symptoms for me. I can't say it
would do that for you, but I would certainly read the book. Several others on
this forum are in favor of the Swank. I have stuck to it for well over twenty
years, the only exception to it being that I do have an egg yolk almost every
morning. He suggested we have only two eggs per week. I have almost no
red meat--and I had left eating red meat even before I met Swank, as I didn't feel good after eating it.

It could be that there is an inter-relationship among diseases not recognized
by standard medicine. We should have been researchers ourselves in order to even start to understand!

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