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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Hi John
Thanks for making us aware of this wonderful idea. I'm not sure how well this will translate in the real world.
In my experience, the medical care system in this country has badly deteriorated over the last 2 or 3 decades. Most of the providers are still highly trained, motivated, and hard working. The problem is, no surprise, money now rules everything.
Back in the day, most physicians were self employed, and were able to do things their way. Now, almost all work for some group, often owned by a hospital system, and have to answer to bosses (hospital administrators or group bureaucrats, insurance companies, various levels of governments, etc) They are forced to see x number of patients per hour lest they lose their jobs.
Many have become angry and dissatisfied.
Throw in a maddening, time consuming disease like peripheral neuropathy, which is often impossible to find a cause for, and even harder to treat in most cases, and you have the makings of a disaster.
I am confident that some day there will be a cure and/or effective treatment. The problem, especially for us older patients, is how long we have to wait.
In the meantime, we have to keep trying different treatments and tricks, and keep up a good attitude.
Replies to "Hi John Thanks for making us aware of this wonderful idea. I'm not sure how well..."
You said it all very well!
Sometimes when I feel I’m the bad guy because drs can’t do anything and I feel having me on their schedule is a pain in the ass to them I read words from a kind partner in frustration, I smile!
Thanks
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Reading this opens the door for me to update everyone on the meeting I had yesterday with my Neurologist, Dr. Argoff.
He helped write the SFN book with other (Mayo) docs which I've posted about in the past.
He remains firm but fair with me over my long list of questions. I will never stop advocating for myself so I try to bring intelligent, productive questions but, sometimes they are desperate questions as well. Here it goes...
1. He reitterated....
there is no stage or progression clarification at this time and he would not even try to provide a guide line of comparison or progression between my case and another's based on his personal observations.
2. He believes in lidocaine infusions for pain relief. Each person may have a different experience. I dropped my infusion for one week to test my body and progression after over 3 months of receiving and it was not pretty. I'll continue, now that I have solid evidence, and go to my max highest dose next week. 20-40% relieve at this time.
3. He will only recommend Acetyl L Carnitine, Alpha Lipoic Acid and B12. He would not weigh in on or advise of any other supplements or vitamins as nothing is medically proven.
4. Same goes for topicals...has heard of PEA but offers no advice. No proof.
5. Same goes for cbd/thc. No medical proof or long term studies for neuropathy.
5. His next plan of action, if lidocaine infusions fail me, is IVIG. He claims Medicare does not cover IVIG so I don't qualify. Must look into parts XYZ...haha, don't understand that all yet.
6. Next would be plasmapherisis, blood clense. Covered by Medicare but, not without a fight maybe.
7. He believes in Ketamine powder more so than infusions but did not elaborate and I did not pursue (at this time).
8. Believes opiods may cause a viscous cycle of added pain and has agreed to help me get off them using the new drug Lucemyra. I'm agreeable as I've never wanted them in my body but fear no back up of immediate pain relief (not including cbd/thc, still weighing). If I choose this path...may possibly begin Low Dose Naltrexone to try for pain relief which he agrees with.
9. He says only by getting off opiods can we fully establish my true sources of pain. May legit be all from SFN but must rule out opiods contributing.
In conclusion, you all may know this stuff or not but, what we all DO know is...
Small Fiber Neuropathy continues to challenge the medical community around the world, it's patients, friends/families of patients and support groups. When Mayo declines assisting, you know there isn't much more to do, except count on each other and try our best to be patient with research and potential progress.
We can keep hoping that progress is made in each of our life times.
Rachel