I'm 45 and just received a pacemaker. I am also looking into a connection between my presumed autoimmune problems. I developed chronic kidney disease (glomerulonephritis) at age of 20 and later I was told it was probably IgA Nephropathy because of my symptoms. I didn't get biopsy because I thought it wouldn't change my treatment. In my early 30s I began to have joint pain and diagnosed with osteoarthritis. My mother and her mother had osteoarthritis in early 30s as well. 7 years ago I developed a permanent blind spot (scotoma) in my left eye after an ocular migraine and around the same time persistent muscle twitching which doesn't interfere with my life and is mostly upon awakening in the morning and when I'm very relaxed. I had had skipped heartbeats before and over the last 10 years the dizziness associated with them had become worse to the point of almost losing consciousness. Last week I went to the ER and was diagnosed with Weinkebach Type II but then was told that I had an episode of 3rd degree heart block and needed a pacemaker. The more I look into this the more I think I must have some type of connective tissue disorder. I am upset that I needed a pacemaker but I am also somewhat relieved. It seems that as I age whatever is wrong with the electrical system in my heart would probably slowly get worse and now that I have a pacemaker I don't have to worry about the possibility of sudden death, or getting dizzy and crashing my car. It's been a tough week and your website is very helpful.
I too have posted on these boards looking for an answer. Although it is so nice to have these sites for people it is a shame so many people go undiagnosed. I know you may have been tested for lyme - but maybe not - and you should. But also remember that lyme is a clinical diagnosis not one that should be diagnosed by labs. Doctors are not diagnosing this terrible disease because they rely too much on labs and not clinical diagnosis. Any one with heart block and or has been diagnosed with fibromyalgia should intensely investiage lyme.
So:
if you had swollen glands, sore throat, or earache
if you live a life style that exposes you to ticks
if you have had symptoms for months & doctors can't find anything
if you have low B12 levels or symptoms of low B12 levels
if you have extreme muscle aches that won't go away
if you have joint pain (Ididn't have this one)
if you have fatique, muscle weakness, muscle twitching
if you have insomnia, sleep disturbance, early awakening
if you have fast heart rate when you never had that prob before
if you have tingling, numbeness in your hands or legs
if you have chest pains,rib soreness
if you have been told you have mono, chronic fatique, postviral,
or fibrolmyaligia
if you have some type of surgery where you use antibiotics and
then get sick afterward but no one can figure out why????
You MAY have lyme. Lyme is diagnosed clinically not through
labs. Even the CDC emphasizes this but yet doctors are currently too ofen relying on inaccurate lab tests and thus rule out lyme when it is indeed the culprit.
Education is key - and I hope I am doing my part here.
It is shame that this disease goes undiagnosed for so long.
And I wouldn't want anyone to suffer through what I suffered through. I am feeling better every day now that I am on antibiotics. It will be long haul but at least I found it
oh to be in Canada again, where almost every medical procedure is free, almost.
3dognewt is correct. It was 12 years ago, but I remember when I saw my family GP for PVCs she pushed a stress/echo and cardio appointment right through and everything was done in about two weeks. I guess it helped that I was leaving the area and had a time deadline. But she was a great, great doctor, very compassionate. Maybe she had "connections"! I don't know if things have changed up there or not since that time, but I hope you can get in sooner to get the answers you need.
Also, GI problems do seem to go hand in hand with the soft tissue, connective tissue, heart issue theme.
Hi Hudy,
Sometimes the dr ring up is much much more quicker than we ring up ourselves. When I rang my cardio, the nurse/receiptionist said the closer appointment which available will be 2 months away. The GP thought it was too long to wait for so he rang from his clinic. The nurse gave him the appointment in 1.5 weeks time.
I can understand your feeling. If it turns out in the dr, I think he/she wants to get see or fix within a week. Our word say, "the knife is not cut into your body so you don't know the pain"!
Do you get chest tightness? Any hand and leg swelling when you wake up in the morning?
Take care.
Pika.
Hi, Just to let you know that I live in Canada also. When my dr. really wanted to get my PVCs checked out, she, made sure I got to see a cardiologist in less than 4 weeks. Thankfully, everything I have is benign, but the point is, even in Canada, they can rush you through, if they feel it is necessary, and the good part is, it's free when you get the treatment. So don't worry, if your symtoms change and they see the need to put you through earlier, they will.
Interesting comments. I also suffer from costochondritis, and have for years. I think it goes with fibromyalgia. Perhaps the fibro is the explanation for the heart. I didn't mention my bowel/esophagus problems because I didn't think it was relevant (while in a heart forum) but I have had a "non-specific colitis" for five years. Also, my esophagus developed "failed peristalsis." Fibro is a fairly new disease and it's likely in the future they'll be able to connect up more of the dots. Many people still think fibro comes from stress or hypochondria, and some docs think this way - luckily my docs are all supportive. I read once that multiple sclerosis, before it was completely understood, was known as the "faker's disease."
Interesting comment on the potential correlation between heart issues and connective tissue problems.
Tickertock has posted similar comments, and it seems as though there is a lot of merit to the notion.
I have dealt with costrochondrits on/off for a long time...probably 15-20 years. Just went through a month long bout in April. OUCH!
Have you seen a rheumatologist for your fibromyalgia complaints?
I have been seeing a disturbing pattern among some of the posters here, and even from some of the comments from the cardiologists who answer on this forum.
And that is--there appears to be some connection, although unidentified, with people who have complaints with joints or connective tissue disorders that really can't be diagnosed, and at the same time have some sort of heart issue. Maybe thyroid related or fibromyalgia related?
Bottom line is, I don't think they have found what connection exists between an as yet unidentified connective tissue disorder and heart problems. I think a lot of us are "subclinical", not out of normal range, but not quite right either.
I've had PVCs for 22 years, but last year they increased dramatically in frequency. Coincidentally ? I have also had a lot of soft tissue muscle tenderness starting about the same time--but nothing is "wrong". So I've been chalking it up to perimenopause. hmm. Frustrating for both doctors and patients I'm sure.
Hi Hudy,
Sorry to hear that the slow heart rhythm is causing symptoms. We do implant pacemakers for symptomatic bradycardia but mainly for symptoms. Wenckebach is not considered a dangerous arrhythmia -- infact asymptomatic Wenkebach would not even need a pacemaker. I don't think your doctors there would wait if they thought it compromised your long term health. There probably isn't much else you can do unless you wanted to come to the US and pay out of pocket. It would probably cost more than $15000 US dollars.
I think you are ok waiting, but discuss your concerns with your doctor.
Thanks for posting.