More doctor info

[valgators]

This week I had a follow-up appt with my neurologist at Mayo. Last appt was in February and basically inconclusive with normal EMG. This time I stated I had diagnosed myself: "Statin induced myopathy". CK test was normal (again). I asked if others in the practice were being treated for this. No. I had taken Dr. Graveline's book and a copy of Pam's post with supplement recommendations from Dr. Golomb. In reviewing the list, the dr. reported that some patients had reported an improved feeling of well-being by taking creatine. No other supplement suggestion was given. The dr. did say that some MD and Lou Gehrig's patients reported improvement in pain after stopping statins, so I thought that was good.

Maybe Mayo should take on the task of researching statin effects.

Valgators

[gotts1936]

Valgators, thank you for the update. Yes. my constant leg pain improved after stopping Lovastatin, but now, after one year off Lovastatin my leg pain only occurs when I walk, etc. My thigh muscles seem to have almost disappeared. Maybe stem cells are the answer?

Gotts

[pgrimm]

Valgators, I can only imagine how much patience that visit took. Haven't we always believed that if no one else in the medical field knew what was going on, the Mayo Clinic surely would? That just blows me away. It's really very frightening. This is like before the medical field found a cure for polio, isn't it? Patients having to diagnose themselves. You say your leg pain only occurs when you walk. Do you hear how much you have had to accept? That is so horrible. I admire you for seeing the glass half full, but I get so angry, given how little attention is being paid by the medical community, and how they minimize the number of being who are being effected. By the time they all think that "they" have figured this out, how many more people will be suffering for years like you, and Bill, and all the others here? For Bill, he looks sadly at his arms that have withered away in just four months. He used to work in the oilfields for twnety-one years, then worked in landscaping, so always had done physical work. Right up until December. He has only been able to work two days in four months, isn't that pathetic?

So...were you really as cool and collected with your doctor as it sounds? I get pretty snippy, I'm afraid. They just act so totally out to lunch! So condescending.

Stem cells, intriguing. Go democrats (sorry)!

[gotts1936]

Pam, I believe doctors know the truth, but are accepting the risk of "statin induced myopathy" for the greater good. Duh! Unfortunately, those of us on this website got caught by friendly fire. The acceptance by the medical profession to friendly fire casualties is very disturbing.

Gotts

[pgrimm]

I follow your drift, but what "truth"? The tiny fraction of people who have side effects reported by the drug company? I doubt anyone here believes that when all is said and done, these figures are correct.

[gotts1936]

Pam, we are both on the same page. Doctors accept the low percentages of statin induced myopathy espoused by the drug companies. Therefore, they feel that the risk is worth the results, a healthier general population. I do not agree with it, but that is their rational. Until we can prove the percentages are not worth the risk nothing is going to change for any of us.

Gotts

[equestrian]

Since there are soooo many of us who are obviously adversely affected by statins, I asked my allergist, who is the only one who believes me - why are no doctors aware of all these problems???? He explained, no doctor in his/her right mind reports a POST MARKETING ADVERSE EFFECT. Here's the reason - the doctor gets in the mail several inches of paper work asking all kinds of questions, mostly unrelated, about the patient and his condition. The doctor can't answer the questions, has to call the patient back in, go over the unnecessary questions and submit the report. I don't know what happens from there. Anyway, it is cumbersome and prohibitive and nobody does it - ergot - no post marketing problems. Translation, we do not exist. Problems in clinical trials do not have time to manifest in many cases (not in mine, years to happen). A more efficient method of reporting post marketing problems is patient reporting which does exist but is barely known and also cumbersome.

[harley2ride]

I believe that for each one of us who have perminent or long term damage, there were dozens more, who stopped or switched to another drug in time. Out of 12 people I know of (in my office), who tried statins, 10 of them had to stop due to severe muscle pain. And I keep hearing about more all the time. But since they dodged the bullet, they aren't here to tell about the problems..

[Dee]

Harley,

That is exactly my experience in talking to real life people, about 80% have had problems severe enough to throw their statins in the garbage...but most have recovered and moved on with their lives.

To bad all those ppl are not counted in an official adverse effects report, along with all of us that have permanent statin damage.

What a different picture that would make.

[gotts1936]

Sounds to me those of us who have permanent statin damage are between a rock and a hard place. Wow! isn't that a brilliant piece of knowledge?

Gotts

[Ray Holder]

Hi gotts
I see that a few posts back you said that your thigh muscles had almost disappeared. My right quadriceps went down to just a thin finger width when on statins, and did not improve in the next 14 months after I stopped taking them.Q10 made a small difference, but L carnitine is a permanent necessity for me still, 5 years later. My CK was 500, but seems to keep at about 200 now, I have just had another CK test, and am waiting for the result.

As I also had polio 57 years ago, I now take about 10 grams of L Carnitine daily, over 3 doses. I recently had a bad batch of it and it has taken me about a month on good stuff to get back to what is normal for me, at 87.

Ray

[pgrimm]

I thought I'd share with you Bill's experience with his V.A. doctor yesterday. We met for lunch so that he could vent with me and cool down. I laughed so hard I cried in my soup!

He has not seen this doctor since he was last there searching for what was wrong with him. He only went back yesterday to get him to sign off for a disabled parking placard. First, do you remember George Carlin's bit that went, "Somewhere out there is THE WORLD'S WORST DOCTOR? And, what's more, you have an appointment with him"?

I must start by desrcribing his other two visits with this guy. Bill complained that he was having muscle pain all over. The doctor told him that he walked funny and should get more exercise. Of course Bill told him that up to a week ago he was digging trenches and laying sprinklers for a living. So yesterday, without reading any notes on his computer screen about Dr. Golomb's findings, this doctor started asking Bill how long he's had diabetes (he doesn't), and that he must have arthritis in his hand (it's crippled from when it got cut off working in the oilfield and it was sewn back on, the good doctor sort of forgot this unusual story from the last visit). He continued to ask him a bunch of the same questions from the last visit, as he laboriously entered them hung-and-peck style on his computer for an hour, and Bill got so frustated he called him a fat f---, saying it was the V.A. doctors at fault who prescribed all their drugs and caused him to be like this. The doctor looked at him sternly and warned him, "Are you trying to make me mad"? By this point in the story, I lost it! Of course, it was just as I had warned Bill it would go, and told him to just stick out the appointment long enough to get his parking thingy. I'm just glad he had enough restraint not to hit this portly little obnoxious man over the head with his cane! The final outcome was that the doctor signed off for a parking placard limited to six months. Hey, good news for Bill's myopathy prognosis! He'll be all cured in six months!

I hope you were able to laugh at this "worst doctor ever" story as I did!

[gotts1936]

Pam, your sad tale of Bill's doctors appointment, left me very angry. Are we going to have to act irresponsible like the hockey fans did in Canada and start breaking windows and burning police cars to get the attention statin drug victims deserve?

gotts

[harley2ride]

Pam
Your story would be funnier, if it weren't so darn true.. I still can't figure out how some of these doctors got to be where they are. I have eaten a lot of cracker jacks, and so far, I haven't found a single medical license in any of the boxes I have tried, yet I'm sure they must be out there..

I remember when the Military doctors sent me to Fort Bliss (to prepare for active duty in iraq), even after seeing my Statin Myopathy diagnosis from Dr. Phillips, and after seeing that I couldn't run, march, carry a pack, hell, I couldn't even wear body armor. But the doc said they would fix me.. Pretty good, considering he spent a whole 5 minutes looking at my medical background and talking to me.. He must have been a faith healer..

I sure hope and pray, that Bill gets some relief or improvement... I know that for me, even short term improvement, made a heck of a difference in keeping me from being so depressed..