Cardiac tests/angiogram over. Still no answers

[shadoww]

I had an angiogram last week to see if I had any blockages that would cause my feet/hands and legs swelling, and leg/body pain. I originally had a heart echo that said my heart was not relaxing between beats and primary. dr said that could cause it and to do these other tests to rule them out. So I had the heart echo, (not relaxing between beats), venous/arterial doppler on my legs, showed some cholesterol but nothing major. Then had the ct-angiogram last week. Just talked to the dr., he said it was basically ok. So where do I go from here? I still have body/leg pain, with very little improvement since I've been off the statins, my feet and ankles are still swelling badly and I'm totally stumped.

Along with our usual vitamins, etc. I'm taking 400 mg CoQ10 and 1000 mg Acetyl L-Carnitine and Alpha Lipoic Acid 600 mg on a daily basis for about 3 wks. Body aches have eased a tiny little bit and I emphasize "tiny" but it has been on the plus side. But it seems like I'm stuck now. This thing sort of either snuck up on me when I wasn't looking or hit me pretty much all at once. (I should also say I'm 59) I don't have a clue. I know I saw the dr. in March when she took me off of Zocor and put me on Vytorin. Feet started to swell and she took me off that and put me on Lipitor. Still no improvement, then all the other tests have followed and still no clue. Cardiac dr. said he was going to talk to my primary care dr and see what she says, but I'm not holding out any hope for that either.

I guess its conceivable that since I've been a lifelong smoker and quit in Jan. that it might be related to my lungs. I've no idea. Guess thats next on the list, huh? I was always under the impression that once you stopped smoking, your health would get better and you'd feel better. Well guess what?????? Not here. Almost enough to cause me to go back to smoking.

Going to try and take things into my own hands I guess. Try to use the treadmill a little and take off a few stop-smoking lbs., and see if that helps. Guess it can't hurt.

[Darrell]

Time to see a neurologist and/or rheumatologist?

[shadoww]

[quote="Darrell"]Time to see a neurologist and/or rheumatologist?[/quote]

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Hi Darrell, yeah that or pulmonologist for my lungs. I don't know. Its very disappointing and stressful to not know whats happening with your own body. I had always chalked up the statin body aches the past couple of years as getting older. I've had feet/ankle swelling off and on but mainly when I would sit here at the computer most of the day, so I figured that was it, but now I know that wasn't it. We went to Jamaica in March for our wedding anniversary and my feet swelled really badly and I wasn't anywhere near a computer or sitting all day, so I know it wasn't that. Guess I'm going to have to see my primary and see whats next. I knew it would be an elimination thing, but thought surely I'd know by now.

I did take your advice (think it was you,) and get the compression hose. That helps at times, but there are other times when it DOESN"T help and they still swell. It just helps them not hurt as bad.

Hope you have a great weekend, and thanks for the reply.

[harley2ride]

Shadoww,
I've never noticed any swelling problems, but if you read some of my posts, I've had statin injury for 2+ years now, and continually getting worse, despite spending nearly $60,000.00 out of pocket seeing specialists and getting tons of tests. My muscles hurt constantly, and my vision is even becoming affected. My eyes get tired just working on my computer monitor off and on all day. No matter how much medication I take, all I can achieve, is a LITTLE relief. My latest biopsy showed Mitochondrial Myopathy, which if you read up on it, is basically Muscular Distrophy. Even if I spend hundreds of thousands more on doctors and tests, there is nothing they can do. All one can truely do, is keep reading forums, listening to others, and keeping current on new research, and informed experimentation with supplements to see what helps. I have been heavily researching statin injury since Feb. of 2004, and I probably spend at least 3hrs a day researching anything I can find on the subject. Sadly, I still know little about it, and even sadder, I know more than many of the doctors and specialists I have seen. One of the top Neurologists in the Northwest saw me twice in the past year. He is just now starting to believe what I have told him about statin injury, and is to the point where he is going to research more deeply to learn all he can. There is a fine line between educating your doctor on the subject, and making him think that you are leading him to a diagnosis. The Neurologist at first thought I was trying to lead him to the diagnosis. After speaking with him on the phone, and pointing him to a couple of web sites, he has finally become a believer. Until the medical community becomes educated on statin injuries, there will be many misdiagnosis, and more and more people will be harmed by statins. In your case, I agree with the other posters, that you need to see someone who specialises in statin injuries, as they can perform a co2 test to see if your muscles are processing oxygen and/or burning fats correctly, and point you in the right direction for any other conditions you may have. Don't mess around with local doctors, unless they are specialized and familiar with statin injury. That was where I wasted about $30,000.00 of my money, being testing for everything know to man, except for statin injury. And I mean everything. West Nile, Rocky Mountain Spotted Fever, Lime Disease, MS, Lukiemia, Cancer, Hantivirus, Arthritis, Thyriod, and you name it. I've given more blood in the past two years, than most people give in a lifetime.
Best wishes on finding what is wrong, and I truely hope that you never get as bad off as I and some others are.

[Cathy]

I've been off statins for 3 years as of last May. It took 2 years for the swelling to go down in my ankles, completely. I'm surviving by using heavy narcotics. The pain has not gone away. My nerves, I feel are damaged for life. I'v found I "cycle" do pretty good for awhile, usually about a week, then crash, with fatigue, pain, and memory loss (short term). Statins have really screwed up my life, now Its one day at a time, all the tests have proved nothing,except that med bills are really a life changing thing too.... I too spend hours researching on the internet,and trying different things. I also feel I know more than my DRs on this subject and its a battle everytime I go to the DRs. OK off the soapbox, just my story, best of luck.....Cathy

[shadoww]

Thanks for the replys. I saw my endocrinologist today. Or her helper I guess you'd say. Physician's assistant or whatever. I haven't been back there in a couple of years, have been really bad about going. Most of my diabetes checkups have been at my primary care dr.s', so I haven't really needed to go. So I figured, whats it gonna hurt????? Naturally she's telling me that it can't be the statins since I've been off them about a month, and she thinks it may be my thyroid. So now I go tomorrow for a whole boatload of blood work, all over again. I told her I didn't care if they take a gallon of blood, I need answers! Even then, by having the blood work tomorrow, I still can't get another appt with the endo until July 6th! And I had to wrangle that down from the July 18th!! Anyway I guess in a couple weeks I'll get the results from that.

She's also testing for statin damage, that PK test or whatever it is, so maybe I'll know from that. Or hopefully I'll know something. Until then I just try to get through one day at a time, as best I can. I"ve been a lifelong smoker and since I've been off cigarettes since Jan, my health has done nothing but go downhill. I heard all my life, stop smoking, you're killing yourself, you'll feel better when you quit. Yeah right!!!!!!!!!!! I've felt worse since I stopped smoking than I've ever felt in my entire 59 yrs. Its ALMOST enough to make me start back again.

[Cathy]

My routine tests all come back normal to this day. They won't biopsy because they say theres no reason to, so insurance won't pay. The only thing I have is "slightly elevated liver counts" no big deal according to them......

[harley2ride]

For anyone here suspecting statin injury, I highly recommend that you try to get a referral to Dr. Phillips at Scripps Memorial in San Diego, or try to find another doctor who specializes in statin injuries. I spent over a year getting tested for everything but statin injury, and one trip to Dr. Phillips, and him reading my emg, biopsy results, and a co2 test, and he had the diagnosis as statin injury. My second biopsy just this past March showed that my injury has progressed to mitochondrial myopathy. Even though it sucks to have this injury with no cure, at least I know what I'm up against.