Great article! Modern medicine is awesome!! Thanks for sharing!
TA
I have had cardiac ablation, AV ablation and then a defibrillator put in and now the heart failure due to the constant atrial fibrillation is stable. After the ablations, I first had a regular pacemaker put in but I would still go into atrial fibrillation (irregular and fast heartbeats) and had to be cardioverted (shock my heart with paddles). I had 7 cardioversions in a matter of 2 years. After having the regular pacemaker for only 1 year, my cardiologist put in a 3 led defibrillator and that has helped tremendously. I go to my cardiologist every 3-4 months to get monitored to make sure the defibrillator is doing its job. Thank the Lord for medical technology, as my heart function was at 35-40 and getting worse. I do get an echocardiagram done every 4-6 months to make sure the heart itself is stablized. Both my cardiologist say I have cardiac sarc but the only way for definite diagnosis is a heart biopsy. They will not do it because of the risk involved and just another added surgery. Why rock the boat now when all is calm. I also have sarc in my lungs, spleen, lymph nodes, neuro, feet/ankles, joints and lots of fatigue.
can you tell me if you are disabled? trouble walking and movements weird maybe looks like some type of stroke, but isn't? chest pain, fatigue, muscle twitching, spasms. and how did they say neuro sarc from what tests or determination? i'm glad they have helped you in this with the heart, i also seem to have cardiac sarc or autonomic dysfunction for the heart and temperature regualtion, heavy sweating.
thanks for your input and information, as many of us things don't work well, and finally someone has things working well for them, thank god.
Ostrichlegs:
Yes, I am on disability. I applied for it a little over 2 years ago and was accepted within 6 weeks of application on the first try. Unheard of I hear! I am on low dosage - 5 mg. - of predisone and 100 mg. daily Immuran plus 3 different inhallers. When I try to get off the predisone completely, I also have trouble walking. I want to get off the wicked stuff but the pain is so bad walking that all I can do is sit. In the last 3 months, I've slowly weaned down from 10 mg. to 5 mg.
I'm starting to feel all the aches and pains in the joints but atleast I can still walk without pain. A couple of years ago, I started getting like electrical shooting pain in my legs and feet and some numbness. My doctor did a test - I don't remember what it was called- and said I have periphel neuropathy which I guess is from neuro sarc. So I take Neurotin daily for it which helps.
That was a really good article. I have cardiac sarc also. It came on suddenly one day i really thought it was just a strange thing my heart was going so fast it was like vibrating but i was doing nothing but sitting down watching tv with my family - i waited for it to go away - it took a while but it slowed down then it happened again and my mom took me to the emergency room because i was like its not that serious please dont call 911. it was that serious and i am lucky to be alive after that nite. I had a million tests done and an ICD implanted in my chest. now my heart beats as its told to and the defibrillator on stand by - i only got shocked 1 time - but it has the ability to pace me out of the arythmias 29 times before the shock happens and that still happens more frequently but i dont feel it, i also take some meds for it. my cardiologist told me about the ablation procedure and if i keep having episodes and it gets to be more often they will do it. it is kind of invasive and scary sounding to me. i just try to remember to take my medicine every day!
peace love & happiness
julie
Very informative article thank you so much! I also have an irregular heartbeat but my doctor is hesitant to say at this point that it is sarc related but I am skeptical. I'm afraid one day I'll end up in the ER as many of you have. But one day at a time I can't live like that. I'm glad you all seem to be on the upswing of this.:)
Add to the discussion