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drspark61

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Hi. First-time poster here, but I've been lurking for a couple of weeks. I'll have to second what others have said about the participants in this forum being remarkably empathetic. I marvel at the amount of information and support bestowed upon people who are obviously experiencing great fear for themselves and their families.

I have a question concerning muscle stiffness/tightness and pain. When a muscle is stiff/tight and causes pain, does the pain (and stiffness) occur globally in the affected limb, or is it pretty local? Does the pain ever present as a mild, dull ache that throbs? For almost a month now, I've had a tight and sore area in my left calf (on the outer edge). There is an area about the size of a deck of cards that I can press on and feel soreness. Sometimes this same area will throb with a mild ache. At first I chalked this up to a running injury, but the persistence of the discomfort has caused me some concern.

Last week, I began to have have an intermittent dull throbbing ache in the lower inside part of my thigh on that same leg. In the days following that, I could feel a sore area, again about the size of a deck of cards. In the past few days, the hamstring on my RIGHT leg has been tight when I get up in the morning and remained tight all day. The trouble spots on my left leg remain.

In all fairness, I should say that in trying to figure out the cause (and cure) for my persistent tightness and soreness I ran across descriptions of ALS symptoms a couple of weeks ago, and that sent my anxiety level through the roof. So now I have to wonder how much stress and anxiety are contributing to my symptoms or my perception of them. (Could stress be causing muscle tension that in turn results in pain, or could it be exacerbating existing benign problems?) I've even become aware of muscle twitches that in all likelihood existed prior this. Sometimes the Internet is as much a curse as it is a blessing. I am a 46-year-old male who has been pretty physically active most of his life and been taking statins for the past 4 years, so I'm kind of in the demographic bullseye for ALS.

I do have an appointment with my PCP set up for later this week, so I'm not leaving this entirely up to the Internet and my (probably overactive) imagination.

Thanks in advance for any insights.

Richard
 

Al

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Hello Richard. Your symptoms don't sound like ALS to me at all. One thing though, I'd be getting off the statins. My Neuro participated in a research project that showed a faster progression of symptoms in ALS by people on statin drugs. He says it doesn't start it (not proven yet) but the commercials on TV for them even say call doctor immediately if you develop muscle pain. Makes me wonder if they know something they're not telling us. I'm usually pro mainstream drug company but not in this case. I've been off Lipitor for about a year. There are alternatives. Sorry this turned into a rant against statins but I'd bet on that causing problems rather than a MND. I'm not a doctor and it's just a subjective opinion.
AL.
 

awieleba

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statins

Al, thanks for clarifing that about statin's. I had heard somthing about that. I was on a statin for a while when I had that colon problem. It is not approved for treating that condition but the doctors felt that it was "useful". There hope is that the spores would attach to the statin and be pulled out. I drank a powder form every moring and night for months! DOuble the normal amount. After I developed these stange symptoms I came across somthing on statins also and was concerned and stopped using them.

My husband has high cholestral and uses garlic tabs to help.

Take care and stop the statins!

April
 

gbrown

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Statins?

Al:

What is your alternative to statins? My cholesterol was out of sight and my GP put me on Lipitor. After all the posts about statins and ALS I asked him if he could put me on something other than a statin and he said a definite "No"!. He said that if I wasn't on something to bring my cholesterol down I wouldn't have to worry about ALS killing me because I would have a heart attack. I have started to eat more healthy and am taking garlic pills. At my last checkup, he said my blood work was the best now that it has been in years.

I have a clinic appt. tomorrow and would like to suggest that my neuro recommend something other than a statin for my cholesterol. What do you suggest?

BTW, Wright, if you have any suggestions, please chime in.
Thanks,
Gordon
 

drspark61

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statin alternatives

In addition to statins, I also take prescription doses (1,500 mg.) of regular, immediate-release niacin. It will lower LDL and triglycerides, but it's big benefit is that it raises HDL (good) cholesterol. (It also has a number of other beneficial impacts on blood lipids.) Many people can't tolerate the flushing you get with immediate-release niacin (or can't stick with it long enough to develop a tolerance to that side effect), but I believe immediate-release niacin is easier on your liver. Either way, you should be under a doctor's care and get your liver enzymes checked annually.

Dietary approaches to lowering cholesterol can include soy foods, plant sterols and fiber (especially soluble fiber). DHA Omega-3 fatty acids can also help lower triglycerides.

Lowering your cholesterol through diet alone is tough, especially if you're genetically programmed for high cholesterol (or, in my case, mixed dyslipidemia).
 

wright

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Gordon, you asked me to chime in . . . but the advice given by drspark61 is excellent.

I would load up on the omega-3 and do it by taking fish oil (at least 3 grams a day) as opposed to flax seed because the fish oil is already in the form you need and the flax seed oil needs to be converted in the body (little of it is actually converted into the essential omega-3's). The reason I mention flax seed oil is because that is how many people try to get a lot of omega-3's in their diet but as I said, fish oil is the best way to do it.

Niacin is another one that is exellent and the niacin flush that it causes is a matter of "getting used to" most of the time. The niacin flush is caused by massive amounts of blood rushing to the surface of the skin because niacin causes the small blood vessels in the body to dilate (get bigger). This causes "flushing" (ergo, niacin flush) and makes the skin look like it's sunburned and also causes a slight burning sensation. It is temporary and usually lasts less than 30 minutes and only happens when taking the immediate release kind, but that is the kind that helps most with lowering bad cholesterol and raising good cholesterol. High doses can cause problems with the liver and stomach but as was already wisely suggested by drspark61, make sure you are being monitored.

Everything else that was mentioned in drspark61's post was dead on correct. The other nice thing is that all of them are relatively inexpensive.

So if you take those supplements and change your lifestyle as best you can, maybe your physician can lower the dose of Lipitor or get rid of it completely. That will be up to you and your physician.
 

BethU

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Hi ... about the niacin flush. I took 2000 mg Niaspan a day (until I couldn't swallow 4 pills any more. Now I take 500 mg, one pill, a day) but doctor told me to take a baby aspirin 1/2 hour before the niacin, and it will prevent the flushing. And it works beautifully for me. I set a timer, and have never had the flush except when I increased the dose too fast.

Without the aspirin, the flush hits about an hour later, and it is uncomfortable ... itchy and burning. However ... check with your doctor before taking aspirin on a regular basis !

Also ... start and build slowly with niacin ... start with the minimum dose, then increase in a week, then increase a week after that , etc.

These techniques have worked for me. Good luck!
BethU
 

wright

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In reply to your thread, drspark61

I agree that your symptoms don't really sound like ALS. Many times when you have an injury or pain in a lower area of your body, you compensate in higher areas, where you will then develop similar symptoms.

An example:

If you hurt your ankle, your gait will most likely change to compensate for the pain you feel and then your knee will start to hurt. Then you will compensate for that by changing your gait once again and then your hip will start to hurt. It sounds as if that might be happening to you and your muscle problems.

Your symptoms could easily be explained by about a gazillion different things. You are doing the right thing by going to a physician to get evaluated. Right now I certainly wouldn't be worrying about ALS.
 

Al

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My Neuro switched me to a drug called Ezetrol in Canada and Zetia in the U.S. My cardio guy concurred with the Neuro's opinion. If you're into natural stuff a GP I know switched all her patients that wanted to try it and uses it herself to a herb called Salba. It has lowered everyone's cholesterol. I'll give you the link.
AL.
http://www.sourcesalba.com/index1.php
 

gbrown

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Thanks for all the suggestions. I will go over them with my neuro tomorrow. I have been on a supplement called EFA's (Essential Fatty Acids, which includes Omegas 3 and 6, Flax Seed Oil and Borage). I also take a 1000mg. pill of Flax Seed Oil and a Garlic Pill everyday.

As I said in my earlier post my latest blood work for cholesterol from my G P last month came back as the best he'd seen in years. I attribute a lot of that to these supplements.
Thanks,
Gordon
 

drspark61

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Thanks, all, for the encouraging words. I've got some weird stuff going on with my leg muscles, but when I think about it, it's all developing pretty quickly (3-4 weeks), which would seem to point away from ALS, and toward overcompensation injuries (like wright said), anxiety or something entirely else.

I did have a strange, presumably viral, illness about 3 weeks ago, and I'm starting to wonder if that had any role in all of this. I woke up one day to overwhelming and disabling vertigo and fatigue. I spent much of the day in bed sleeping, but by the following day I was mostly myself again, although I had a touch of vertigo upon arising for a few days afterward. At first I thought it might have been West Nile Virus, but that didn't really seem to fit.

Finally, regarding the cholesterol conversation... ALA omega-3s (like what are found in flaxseed oil and that Saba product) are good -- you body needs ALA. The body also converts ALA to DHA and EPA fatty acids, but it's an inefficient process. So if you want the benefits of DHA and EPA (lowered blood lipids, anti-inflammatory properties, mood stabilization, protection of brain cells), you should also take something like fish oil.

(I should say that despite what my screen name implies, I am not a doctor -- medical or otherwise -- nor do I play one on the Internet. I've worked in the health field for many years, so I've picked up some medical nicknames.)
 

patricia1

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I worked for a cardiologist for years and the guys getting heart attacks had normal chol LDL and HDL and there is no proof statins prevent heart attacks.
I would do omega eat salmond 2x a week add Niacin and exercise.
Doesnt sound like ALS

Pat1
 

drspark61

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there is no proof statins prevent heart attacks.

I'm not sure that is supported by recent epidemiologic evidence. I'm not here to defend statins. They're not for everyone (and they don't seem to protect everyone -- women, in particular). I'm just a little uncomfortable with broad and definitive statements without supporting evidence.
 

drspark61

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Since I last posted, I've continued to have intermittent muscle pain in both legs, intermittent tightness in my calves and hamstrings and fasciculations (mostly in my legs, but sometimes in my arms). I seemed to have gotten a handle on my anxiety over all of this, and I thought once I did my symptoms might abate (especially the fascics). That hasn't exactly been the case.

Today I visited my primary care provider, who did a basic neuro exam, testing strength and reflexes, both of which were good. Like me, he's not thinking this is a neuromuscular condition at this point because of the rapid onset and development of symptoms (3-4 weeks) and the lack of any other symptoms. He's also not too concerned about the fascics. He IS concerned about muscle pain, stiffness, etc., because I take a statin. He wants me off the statin for a month and off exercise until further notice. In the meantime he ordered blood work for CK, magnesium, sed rate and thyroid function. He's open-minded about what, if any, role last month's strange viral illness may have played in this, and we both acknowledge that stress and anxiety may also be exacerbating factors. I'll admit to still being a little nervous.
 

awieleba

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viral

It may be viral. My symptoms started at end of my pregnancy. but when I got 2 massive infections and ended up in the hosp on tons of IV antibiotics and statins is when my symptoms went up 10 notches. So I am still hoping it is viral. I have some muscle aches and pains. I worry alot also. ( ihave alot of other things you dont) I still have these thigns going on for 6 months.

Take care

april
 
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