Hi, casd57

I'm sorry to hear you say that you feel your doctors have abandoned you because you felt differently about some of the prescribed medications and were expecting answers to questions and didn't get them. I've felt that way at times, too. Of course, each of our doctors is different, as are our relationships with those doctors. I know my condition has frustrated some of my doctors, especially those whose specialties should be of help. I'm lucky, I guess, because I've learned to identify my doctors' frustration. If I didn't know them well, I might also feel like I've been abandoned.

I do believe in asking questions––lots of questions!––even if the answers are not forthcoming. Even if I don't get complete or good answers, asking questions helps me to believe I'm doing my part as an informed patient. Just believing I'm an informed patient keeps my spirits up.

I wish you all the best!
Ray

Hi, I can’t help but reach out and lend some encouragement and advice. Don’t give up on yourself, even if others do! Family doctors aren’t equipped to deal with patients like us— they have revolving door practices which succeed when they see more patients. This means they have less time to carefully examine your chart or do research about your condition. 1. You MUST be your own advocate! You need a specialist; preferably one at a major university. These doctors are teachers and they want to learn more, be on the cutting edge to advance medical science. 2. Educate yourself. You will have to do lots of googling and research, but the more you know about your condition, the more help you can lend your medical team. (You should have a team.) Look for clinical trials on sites like pubmed.gov or rare disease databases. Use your symptoms as a guide to find possible treatments based on studies for medical journals. This is how I was able to assist my doctor in securing Gammaplex infusions to treat my CIPRN. 3. Knowing your family history is important. No information is irrelevant. Did anyone in your family have autoimmune dysfunctions, like hands gnarled by arthritis, or skin conditions like psoriasis? If your symptoms are “idiopathic,” that just means you haven’t traced the smoke back to the gun yet. If nothing in your lifestyle is a contributing factor, ask to have enzyme tests and RA factor tests done to determine if your body is attacking itself. Immunosuppressive therapies could make a world of difference if you have autoimmune conditions. 4. Facilitate communication between your doctors. The more they know about the findings of other doctors, the closer you come to getting some answers, which hopefully leads to a higher quality of life through proper diagnosis and treatment. 5. Feed your body. If you have nerve problems, take Alpha Lipoic Acid and a good B-Complex, Omega 3,6,9, Fish Oil, Magnesium, and D3. Take magnesium at night before bed because it helps with inflammation. Inflammation sets in over night, which is why mornings can be so difficult. One of the best ways to absorb magnesium is by taking Dead Sea Epsom Salt baths. 6. I can’t stress this enough: BE CAREFUL WITH ELECTROSTIMULATION THERAPIES. Think of your nervous system as a motherboard with circuits. The synapses fire from one to the next, and they’re all connected. If one fuse is damaged, you may add insult to injury when you start introducing foreign signals. For example, I received PTNS (subcutaneous tibial nerve stimulation) treatments as a therapy to relieve an overactive bladder. A tiny needle is inserted into the heel, connected to electric current. A signal from your ankle tells your bladder to calm down! While this was an effective treatment, medical assistants, not doctors, administered the treatment. They wouldn’t/didn’t have the necessary bells and whistles going off when I was able to withstand the highest setting, which would indicate damaged nerves to a more well trained eye. If your nerves are already brittle, like mine were before I was aware of my Small Fiber Neuropathy, there can be unanticipated consequences. I didn’t have neuropathy before receiving this treatment. That’s not to imply this CAUSED any damage, but it likely added insult to injury. With independent research I learned that there’s no reliable long-term data to support the long-term mitigation of OAB because the demographic for PTNS treatment is elderly. They either quit or die before any consistent data could be recorded.
It can be easy to become discouraged by treatment fatigue. We don’t want our illnesses to define us, but the self discovery required to find a path to recovery can be a full-time job with little to no coworkers. It can feel really lonely. The temptation to do nothing and live one day at a time is understandable, but dangerous. If an illness is progressive, there are still ways to slow or stop the progression. A body (and mind) in motion stays in motion. I hope you’ll join me in the idea that working toward strengthening the body rather than passively accepting its limitations, is the most important mindset we can adopt so we can sustain and improve our quality of life and help others do the same by watching our positive initiative. 😊 Hang in there!

I, too, want answers; I have always wanted answers. Perhaps it is because I am female and 85 my expectations are lower than yours. I appreciate any medication that helps without bad side effects. I accept medication and realize that medicine is not a perfect science. It is challenges and experimentation, and continually finds new challenges as some progress is achieved.

I was in my early fifties when I started having lifetime medical issues: peripheral neuropathy, obstructed sleep apnea, and iron deficiency anemia. At about age seventy I had a total knee replacement, then viral meningitis, next a staph infection when I noticed a change in a lump on my arm, then idiopathic small fiber neuropathy. At about eighty I was found to have congestive heart failure and chronic kidney disease, incontinence, central sleep apnea, and I needed a D&C and a lumpectomy. I am grateful to have had four successful cardio versions and little pain. At eighty-five I have few expectations but I still want explanations and, if possible, help for balance and falling. I have a neurology appointment on Friday.

My computer supports my curiosity and the television serves the news junkie in me.

I've got the diagnosis:

By yours truly,

@erichendrix