@kjoed53 and all... Yes, I am indeed a fighter. Doctors are not telling me I won't improve. They are working to determine the underlying causes of the crazy things happening. But, to date, after seeing a Neuromuscular Neurologist, who even did DNA testing, having MRI, CAT scans, blood-work up the yang-yang, EMG, and more, there is no definitive answer yet to what's causing the muscle issues. I know. It's the Oxymic sending wrong signals to my muscles telling them not to work as instructed. And, combine that with my auto-immune diseases and wonky system, the nerve signals get confused and my muscles don't function properly. So, it's brain, nerves, muscles, all in one. That's my diagnosis and I believe it makes sense.

I don't take Creatine as the hormone that reduces sodium from the blood system is not working, so I have too much sodium in my blood, causing severe fluid retention, a side effect of creatine supplementation. I fight edema daily and for decades had dangerously low Potassium levels, due to this imbalance. I now take several Spirnolactone tablets daily to counter that issue, and diuretics as needed when I gain 3+ pounds overnight... often gain 5-9 pounds of fluid overnight...

I am a supplement user... Magnesium, B-Comlex, B12, D3, Zinc, Potassium, eye supplement, Folate, Ferritin- chronic low Ferritin - Pernicious Anemia, D-Mannose, Probulin Probiotic - critical care, Centrum Silver for women, and other... They are keeping my balanced and I'm constantly researching for others I need. But, very cautious to do my research!

I worked decades to get to this place with my medical care. I fought hundreds of battles and wars along the way to be heard. To be taken seriously. To find the right doctor to hear me, to work with me and understand my entire body. What a tough job this was all these years. Especially for women my age. We were told it was emotional. It was psychosymatic, given Valium, dismissed. never listened to what we said... Long, hard journey, at least for me with the medical field.

I am enormously thankful for Mayo Clinic doctors, the system that is built on putting the patient first. On caring. On listening. On sharing information. In 1986, the first year Mayo Jacksonville opened, I was diagnosed with Sarcoid in my lungs. I was quite ill. Unable to function. In pain. I was diagnosed with a lung biopsy, and given the results of the test in the recovery room! Not a month later by a phone call! Sarcoid... treated with 80 mg Prednisone for 6 months. Thus, my journey began.

Thank you for the advice and encouragement. I am at a good place of acceptance. Not giving in to a disease. Rather, acceptance that this is in fact happening, I will fight like hell to get the care and assistance I need to be better, but I will also accept the fact it is happening. And, there are times things do not improve.

I do everything and more to make my decisions and follow my path to reverse the symptoms. But, there are times I hit a wall and can only accept partial improvement. That's where I am with this muscle and Prednisone junk. I accept partial improvement. 14mg Prednisone is a good spot for me to hold at this moment. I'll deal with that. Not ideal, but the best we can do at this point.

Blessings as you walk this wild and crazy medical journey... Elizabeth