amyloidosis and ATTR-CM

Posted by fpc3 @fpc3, 13 hours ago

I saw the commercials on TV for ATTR-CM and got interested due to the combination of symptoms. I realize the drug companies advertise to sell their products and I tend to dismiss all medical advertising, but in this case I want to explore further.

I have experienced the following symptoms for the years shown:

Shortness of breath brought on by exertion or when I am not exerting myself (diagnosed but without attribution to any one cause): 50+ years.

Spinal stenosis (lumbar for 30+ years) (cervical for 10+ years)_

Carpal Tunnel diagnosed 10+ years ago, but really just started bothering me in the last year. (not all respected medical sites list this condition, but some do list it)

Bloated belly: not bad, always written off by doctors as a diabetic belly.

Coughing and wheezing at times. I have had pneumonia 8 times in my life, several times requiring hospitalization. I can be wheezing and having difficulty breathing when my O2 saturation is 98 or 99. It takes me about a year to fully recover from pneumonia.

Heart palpitations (occasionally) but cardio doc is not concerned.

Fatigue (always written off as related to diabetes) and occasional dizziness.

Just for background, I have had COVID three times (and have always had all vaccinations) with one bout bringing on Long Covid which lasted six months. I am a 72 year old male with arthritis in almost all joints, diabetes for 30+ years, IBS for 55+ years and I am retired from the Air Force. I served in Desert Storm/Desert Shield and have never been sure what I was exposed to there or on bases with nuclear weapons and asbestos in many of the buildings.

If, and it is a big if, I have ATTR-CM, I'm guessing it is likely to be the “wild” version because I don't know of anyone in my family having this. I have life-long shortness of breath induced both by activity and inactivity. No pulmonologist has been able to explain my SOB. I was told 10 years ago after an EMG test for cervical surgery that I had carpal tunnel, but it never bothered me until a year or so ago. I was diagnosed with lumbar spinal stenosis 40 years ago. I was diagnosed with cervical spinal stenosis 10 years ago prior to ACDF surgery.

I am currently being treated for peripheral neuropathy, primarily in the right arm with right hand weakness (I drop things quite often), and tingling in the right hand and fingers with some pain radiating toward the right elbow, A new EMG confirmed the carpal tunnel again on both sides, but the neurologist thinks the problem is more likely to be a pinched nerve in the neck, possibly related to the ACDF surgery 10 years ago. I have been wearing a wrist brace for two months at the suggestion of the neurologist because she wants to see if it is carpal tunnel or peripheral neuropathy. Her theory is that the wrist brace for carpal tunnel will help only if it is carpal tunnel, with the alternative that it will not help if it is neuropathy. So far, it has not helped.

I’ve put off the annual cardiologist visit because I have not been having cardiac issues. I see the neurologist in about three weeks. I have enough medical issues at age 72 and I am not looking for new ones. I’m looking at this mostly because I have been searching for the causes of my shortness of breath for 50 years. The SOB, combined with the carpal tunnel and the spinal stenosis, constitute three of the six or so possible symptoms for the wild version of ATTR-CM.

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