Well hi there been awhile..

Last week I went for my MIBI testing (chemical tredmill test) in Victoria BC and I got my results back yesterday, aparently there is a problem with my heart.. an area that is not getting enouph oxygen I guess.. Ischemia.

It never ocured to me that they would actualy find anything.. My chest pain is very bad and it was just safer I guess for me to think that this is only RSD related, I was woried that it could possibly harm my heart though.. not sure the relationship between the two but I do know that the heart contains an awfle lot of sympathetic nerves.

So thoughts... I am numb today emotionaly.. just waiting on an apointment with the heart doc.. ohh and cancelled a root cannel apointment for today (pwew) my tooth that is threatening to erupt.. I realy need a vacation from my life. The dentist by the way and his receptionist had read up on RSD and dental precautions for me before my first apointment.. kool eh?

I am realy not sure what to think of all this.. I'm just tired of it all.. I know surgery would be very bad for me, I have pain when at rest in my chest and neak and arms mostly all day... and not just with exertion so it is an unstable angina and is more unpredictable aparently.

I want any advise you can give me on this please.. your thoughts.. is this because of my RSD? I have had problems in the past but mostly due to drug allergys.

Diet?.. Big time antioxadents.. research will distract me but it gets scarryier the more I do as you all so very well know. Such is life..

I hope you are having low pain dayze my friends.

Hugs,
Sandra

double post

sandra,

i'm sorry to hear that your test results were so upsetting to u.......i hope u can keep the worrying at a low level till u see the cardiologist.

there r so many options for treating cardiovascular problems BESIDES surgery.....my hubby has had bypass surgery twice, with marvelous results - but the good results don't seem to last very long.....however, on medical management (drugs, diet, exercise) he's done very well for the last 10 or 12 years.....very well indeed, considering that in his case, 'diet' means being incredibly careless about what he eats, and 'exercise' means channel surfing....he IS faithful about his meds, and tho he isn't up to strenuous activities, he has a fairly normal life.

if anyone talks surgery to u, insist on a second opinion....and maybe even a third.....in many cases, non-surgical treatment is effective.

good luck with the cardio, and please keep us informed.

liz

I dealt with all of that in 98 when I started having chest pains. I had a treadmill test which I didn't pass and then they did another test where they shot meds in me to slow my heart down and then I had to go back later in the day for them to put meds in to speed it up. They said I'd had an Ischemic attack.

I was sent to another hospital in another town that specializes in heart problems and they ran that tube up my vein in my right hip and you get to see it on TV. I can't think of the name of that test to save my life. They put me on meds such as Imdur, nitroglyerin and other meds. I would rather die then take those meds. I had the worst headache of my life. They also diagnosed me with Coronary artery disease also.

A lot of the chest pain comes with Fibro and RSD and TOS so they have a hard time trying to seperate them. It took me 5 years to get all of that chest pain calmed down to some extent. I even had surgery to have 3 inches of muscle taken out from under my left arm. I have many triggerpoint injections into my left chest to calm it down also. I still have it but it's not near as bad. I do have a heart Dr. that oversees my care but I won't take their meds.

I am hoping for you that they will find out it is minimal with the heart and most of it will be from the other things I have mentioned. Another cause of chest pain is costocondritis. None of them are fun but hopefully it will be the other things besides major heart problems.

I'm telling you this so you will see that this is a possibility and you won't worry as much. It's good that they are taking all of the precautions to seperate the problems.

I do hope you will get some rest and don't worry so much. That's not good for you either.

Feel better soon.
Ada

Dear Sandra -

I am sorry to hear of what you are going through. I know that it can be very frightening.

Three years into my RSD I began experiencing strong chest pains, but no one thought it was cardiac in origin because I had just had a clean thallium stress test [nuclear medicine] a few months before and I had no established cardiac risk factors. Well, long story short, it was cardiac, only they just stumbled upon it a year later when they were following something else up, and once I had the second thallium scan (essentially the same thing you had done) I was not allowed to leave the radiology waiting room and was admitted a few minutes later through the ER. When I got an angiogram a couple of days later they found a "chronically 100% occluded Left Arterial Descending Artery." As it was, they were able to stent the major portion of the artery, but a small amount of tissue at the very end of the LAD had been lost, roughly 10% of the muscle mass around my left ventrical. I had had what is called a "nontransmural infarction," that is a heart attack in which both sides of the heart kept beating, probably one night a year earlier when I went by ambulence to the ER at 3:30 in the morning, but was discharged when I ran a normal EKG, the ******* doctor on duty having heard stupid me tell him that I had had a normal Thallium scan 6 months earlier and concluded that it was probably an esophagal spasm, all without bothering to run the very standard blood test that would have revealed telltale enzymes from the infarc. Fortunately, I had no other occlusions or, with a fully occluded LAD, my first heart attack would have been my last. And fortunately as well, I suffered no measurable loss of heart function. Still, if they had caught it a year earlier, an angiogram might have prevented the damage I did have . . . .

You did not say whether you had been given any nitroglycerin tablets by your doctor. You should get them without delay, as you should insist on receiving an angiogram. Let that be the moral of my little story.

Now, as to the link between Coronary Artery Disease and RSD there seems to be a link in a "pro-inflammatory cytokine" called Interluekin 6 [IL6]. A study that Dr. Schwartzman et al did about a year ago showed that in ALL of the RSD/CRPs patients studied, the level of IL6 exceeded the base sensitivity rate of the assay by a factor of at least 25, which I am told by my neurologist is huge. Secondly, IL6 is now being acknowledged as the most powerful risk of death from CAD. Here are two best references I have seen:

1. "Changes in Cerebrospinal Fluid Level of Pro-Inflammatory Cytokines in CRPS," G.M. Alexander, et al, Pain 111 (2005) 213-219 (finding of significant increases in interleukin-1ß (IL-1ß) and interleukin-6 (IL-6) in the CSF of patients with CRPS-I: the mean CSF value of IL-6 in the CRPS group was significantly more (P < 0.005) than that seen in the control group; CSF level of IL-6 in all patients exceeded the sensitivity (0.039 pg/ml) of the ELISA assay by a factor of at least 25). It's the lead article under the heading of "Research" on the RSDSA Medical Articles Archive page, which you can download at http://www.rsds.org/2/library/articl...ive/index.html

2. "Relative Value of Multiple Plasma Biomarkers as Risk Factors for Coronary Artery Disease and Death in an Angiography Cohort," Kenny W.J. Lee, at al., Canadian Medical Association Journal, 2006 February 14; 174(4): 461– 466 (in an 8 year longitudinal study, where they froze the blood serum from over 1,200 people up front, and then analyzed it after they knew who had lived and who had died, IL-6 was identified as the strongest independent predictor of CAD-related death) (free) full text pdf file at: http://www.pubmedcentral.gov/ (just copy the name of the article into the search box and follow the prompts).

I have been going from pillar to post on this one, and have quite literally been to both the Mayo Clinic in Rochester MN and Johns Hopkins in Baltimore MD. but neither is yet testing IL6 levels in clinical patients. I was however given the name of one lab that tests this, and hope to have it done within the next month or so. After that, I don't know what. Probably try grape seed oil or the like, if I can figure out what are the therapeutic dosages. For a thread I put up a few weeks ago on a related anti-oxidant, Pycnogenol (French maritime pine bark) click here: http://neurotalk.psychcentral.com/showthread.php?t=5162

The good news in that anti-IL6 meds are close to getting approval in the U.S. - if the rate of opportunistic infections isn't deemed too high - at least for Rheumatoid Arthritis and Chron's Disease. How much longer they take to reach the RSD or CAD communities - and whether a reduction of IL6 levels would actually benefit RSD patients - is anyone's guess. Think of it as an logical exercise in determining the direction of causality.

I hope I haven’t put you off with all of this. It's something that a lot of us are in together.

Mike

Thanks very much for posting that, Mike, this is something I'm very interested in. Don't know why, but I feel intuitively that there's something fundamentally right about this research and, anyway, as an arthritis sufferer, it sounds like it will be generally very beneficial to me in all ways.

I'm useless at following up on research stories, so I'd be grateful to see anything else you find that relates...
all the best.

Hi Sandel - so glad you've joined us, but so sorry to hear about this latest development; I do hope you get good care; I suppose it's quite lucky they found out, though, it's so easy for us to put everything down to ailments/diseases we already know we have,
you take care, all the best,

Among the things we can do (even if we can't get any aerobic exercise) is watch our weight, reduce our fat consumption and take meds and/or nutritional supplements remedies (Omega 3 oil is very good) to improve our lipid profiles, as well as using antioxidants to interfere with the operation of vascular adhesion molecules. Basically reducing our conventional risk profile as best we can. [See Slide 16 in the following article posted by Roz.]

Since we got a dog a year ago, I've lost 27 lbs. Not from walking him - which I can't - but simply by maintaining what amounts to a vegan diet during the day so that he isn't always begging my lunch. Surprisingly, that hasn't always worked out, to the point that I may have the world's only shiba inu who likes hummus and baba ganoush on whole-wheat peta bread.

Just Updating

Mark that is so funny!! I have a Schipperke that likes raw potatoes, pineapple, and apples. There is no way I can eat an apple without sharing it with her. Lil