Goldy :)

I am reading like the devil for you, lol. I am not through with what all I would like to cover, to really answer your post, but I have a few answers and questions.

I do not understand the question you ask here " I know that all the symptoms for the two started about the same time. The thing is they only did some stress EKG's and Cardiolite studies in the beginning of my symptoms. And I was told those were normal. Your thoughts?"

What do you mean by "symptoms of the two" (I am confused as to what the two are). Please forgive my foggy mind. I know that you understand. If I assume it is FM and aortic valve leakage, I am probably wrong :confused:

I have totally read the Birmingham Heart Clinic web site. I looked at each doctor's credentials. I don't think that any do valve repair? This is very important; have you asked them if you have a bicuspid or tricuspid aortic valve?

So glad to hear that your insurance is good. BCBS allows you to go to any state that has BCBS, and if that state's doctors/hospitals are in the preferred network, your coverage is exactly the same as if you were at home.

I just received my cath and other lab reports from the CC. I am very disappointed with an obvious mistake they made. I am going to fax them later.

I wanted to say that I know that you have been to many doctors for fibromyalgia, and any answers are often vague. Cardiology is different. You must demand and keep all of your medical records and test results. I surely hope that doesn't sound condescending :(

You don't need a referral to get an appointment at the CC. Just make sure you get it pre-certified with your insurance company.

There is no doubt to me that Fibromyalgia and connective tissue disorders could cause valve and other heart conditions. Remember the myofacial tissue or whatever. I have about forgotten about it but.....

Don't be worrying about valve replacements yet! Let's study valve repair the easy way....No open heart surgery I believe. That is what I wanted to cover before I answered your post. I have felt the worst that I ever have in my life for the last month or so. I think I am repeating myself here, lol.

I think I may have figured out that I have/or had drug induced lupus from a very potent heart medicine that I have taken for many years. I changed last night and some of the muscle pain has gone away already. (I was taking a beta blocker, atenolol (6 or 7 years) and switched to Coreg last night.)

Cross your fingers for me.

My best to you,

Huck

Goldy :)

I have been "pesty" with my computer all morning, digging for info for you and I always find something to help myself. It is inevitable when studying heart disease.

Goldy, I swear it raised the hair on my body when I read your statement about the diagnosis of Fibromyalgia, after you had had episodes of shortness of breath and passing out. I think maybe that is where things may have went wrong, I just don't know. There are so many "conditions" and variations of conditions. FM to me is just a general diagnosis when your body is aching and fatigued.

I truly believe that some heart conditions and the powerful medications to treat them, combined, cause some of the same symptoms as FM.

At this point I am really confused. I guess more than ever about having FM and heart disease.

Anyway I was reading about aortic valve repair on the CC web site and found that it does take minimally invasive surgery at least to repair or replace an aortic valve.

I started to compare your echo results to the reference ranges on my echo test results. I suddenly realized that a women's reference ranges should be different from a mans.

So I journeyed into the land of totally non standardized, subjectively interpreted echocardiograms. It blew my mind. Looky here:

Conclusions

Despite the widespread use of echocardiography for diagnostic purposes, interpreting and reporting of echocardiographic measurements is seriously limited by a lack of standardization of reference values. Furthermore, there is no agreement among echocardiographers regarding the partitioning of reference values (by sex, ethnicity, or age), the anthropometric measure to be used for adjustment, or the choice of cut-points to categorize values within the abnormal range. The generation of a consensus regarding these controversial issues merits urgent attention to render more scientific and consistent the interpretation of echocardiographic measurements within and between laboratories.

Have you read the survival statistics on aortic valve repair and replacements at the CC? If not I have them. They are 0% mortality for repair.

I also studied up on the vagus nerve and most organs of the body it can effect. It is a powerful nerve. I have the feeling that some symptoms you mentioned could be due to your heart, as well as nerve damage.

I would stay focused on the heart though Goldy. I have learned to listen to my body when it comes to my heart. Your heart will try to signal, or warn you that you need to dial 911. I have done this several times, due to chest pain and each time my life was saved by the insertion of a stent, that cleared a large blockage in one of my coronary arteries.

Now I can have no more stents in my most importantly coronary artery-the left anterior descending (LAD). Bypass surgery is next for me. My doc has said no more stents in the LAD. I have 4 already.

I have been reading about connective tissue disease and all of the info seems to be dominated by Marfan's syndrome. Remember, these people have very odd physical characteristics such as being really tall and having very large hands. A doctor can diagnose this syndrome by just looking at the patient, I think.

I also have hypercholesterolemia and cannot take any statin. My numbers are unbelievable.

The Vioxx is a real terror for me to hear. Those with FM have searched for any and everything to relieve their pain. I cannot believe that people are still taking Celebrex!

I had a dear friend that was a nurse that took the Phen-Fen combination and died last fall.

Well, I must drive from Clements (Limestone county) to the far side of Huntsville for a doctor's appointment today.

I am also having a high BP crisis. The change to Coreg has caused it. It takes a while for the full effect to take place. On my on I took a 150 mg dose of Avapro, an ARB which I just stopped due to adverse side effects. To date, I have tried every ARB and cannot tolerate them. I am like you when it comes to being super sensitive to medicines. I believe it could be combinations that cause the adverse reactions.

The study goes on. I have so much to say and so little energy and time to say it. Yes, once I was on an FM board, but now cannot sign in due to a glitch. There is an FM board here :)

Till when :)

Huck