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Posts (610)

5 days ago · Pain Pill Addiction and Neuropathy - Looking for Guidance in Neuropathy

This is one of those areas where one has to be very careful, whether treating yourself, or someone else, or just making a suggestion. My neuropathy was making me even consider suicide for several months. However, I read about Turmeric, and that it might help, so I tried it. Now, a couple years later, I still use about 1/8 tspn in a glass of warm water whenever I feel the neuropathy coming on. Right now, I have not used any since Christmas. The danger, though, is that the Turmeric has much the same blood thinner effect as warfarin. One possibility of the success is that the Turmeric helps the blood get through the myelin sheath around the nerve, thus bring some healing to the damaged sheath or nerve molecules. I was having neuropathy all over my body, from toe to pate. The worst was in my peritoneal area, giving me a complete change of feeling in my hips, from itch to wild burn as my dystrophies progressed. I pray this relief from Neuropathy holds.

6 days ago · Does anyone find that a brand of shoes helps your foot neuropathy? in Neuropathy

I have the best response with Dr. Comfort, old style, and they last longest.

Thu, Feb 13 2:13pm · Heart Rhythm Conditions – Welcome to the group in Heart Rhythm Conditions

OldKarl here. I am already a member of several other Mayo groups. When you have multiple systemic diseases, all incurable and all eventually fatal, everything of body, mind and spirit is up for grabs. For my heart rhythm issues, I have frequent spells of tachy, early or extra beats, slow, diastolic disorders, dilated cardiomegaly, QRS bounces, etc. These have been dXed as many different disorders, from excess vitamin D to Polio to Amyloidosis. I have a list of about 100 different dX in my 80 years. The current certain dXes impacting the heart include RyR1, RyR2, FKTN, Gelsolin, CAA, RA, Radon, Chronic Bronchiectasis, Cancers: Prostate, Thyroid, Melanoma, Esophageal. Married 60 years, 4 children, 10 grandchildren, 18 great grandchildren (including 2 Marine Great Grandsons)

Thu, Feb 13 11:49am · Bronchiectosis to Atelecaisis in MAC & Bronchiectasis

Simply a piece of advice. "Keep Digging!" I was hospitalized with a pulmonary and cardiac disease four years ago. The pulmonologist said "Just a form of pneumonia. You will get over it, and never be bothered by it again." So I am still being hospitalized about every 2-3 months with the same thing, but now other docs are saying "Chronic Bronchiectasis" and/or "Atelectasis(?)" And there are some very good articles available both from Mayo and from University of Helsinki Hospital and Med school.

Thu, Feb 13 11:39am · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Thanks for the reminder. I started, decades back, keeping written records of health care. Now I know why. I take my own records and compare them to the notes from Mayo, NIH, Univ of Helsinki, ARUP and others. Then, if I am not satisfied with the diagnosis given by one of the labs, I know exactly why, and what I can do, even if the diag is all screwed up. Example: I was diagnosed by a local clinic with chronic bronchiectasis a decade ago, and the doc said I just had an over-reaction to a med. Mayo says differently, and I know now what I really have, or at least I know that my disease is not just an "over-reaction". It is a deadly disease, one of several I have had and fought with for my entire life. And when I do die, at least I will have the satisfaction of knowing what it is, even if the local docs are afraid of it.

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

@nanny23 Any place you have nerves, with or without muscles.

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

@nanny23 Nanny, at this point I can only add a bit of info. One of the docs who did my endo mentioned that this is common as a side effect of several forms of neuropathy. That is, when whatever you have that will bring neuropathy gets into one of two places, the esophageal valve system or the sensori-control nerve, it can make the valves inoperable or inefficient. There are several disorder which can do this, such as various forms of Amyloidosis such as Crohn’s, Multiple Myeloma, Light Chain, Gelsolin, any kind of misfolded protein. Also, of course, diabetes, cancers, simple nodules on the valve system. When they checked me for muscle movement, they found that some of the tubing was not moving quite as it should when I gave the command to swallow, or cough, or whatever. That would probably be the neuropathy, it seems, as I have neuropathy all over my body. Maybe that is why the doc calls me “Psycho”.

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

This isn’t going to be much help, I’m afraid. I don’t have arachnoiditis, but I do have Primary Systemic AL Amyloidosis. Finding a doctor within a thousand miles who treats it, and wants to treat it, is nearly impossible. Actually, at my age, 77, having a diagnosis is really only a more realistic life-span prognosis, even with the new meds and procedures. But getting a Medicare-accepted diagnosis is almost impossible. The Bindings sFLC assay,which is said to be 100% sensitive and accurate, is good only if one can find a doctor to work with Mayo, get Mayo to work with that doctor, and get Medicare to accept that procedure. And about pain. All the local docs want to do about pain is get you hooked on MM. I think they grow the stuff in their desk-top greenhouses.