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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
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
Replies to "Reading this opens the door for me to update everyone on the meeting I had yesterday..."
@rwinney Thank you very much for this information Rachel. Are lidocaine infusions covered by Medicare? It’s good to know that your Dr endorses taking acetyl L Carnitine as I have seen conflicting opinions about its use. I actually bought a bottle but haven’t started taking it yet. There are some days when I feel very down but, for some reason, today I feel hopeful that there is a way forward to controlling the discomfort. I think one of the reasons for my hopeful attitude today is the support and sharing I see among members of this group, so thank you all.
@rwinney...I just saw your post! Rather disappointing. I have my appointment this week. I expect the same...it is disheartening. Will keep you updated. I am pretty much starting out on this journey so there is so much I do not know yet. It sounds so hopeless though. I did get the prescription for compounded Phenyloin 10%. Was faxed to the pharmacy. I hope to get a call soon to pick it up. I am not too impressed by the topical PEA so far but the capsules are definitely a "mood enhancer". I am surprised that by now that I have not closed myself in a closet and died from my burning feet! Right now I am dealing with wound healing on my feet due to loss of sweat glands an circulation do to no innervation from the dead and dying nerve fibers. The areas of wounds not healed is where the burning is most intense because the boundary between the dermis and epidermis is being exposed to external heat. Sweating, also controlled by these nerves that stimulate the sweat glands (mine are almost gone in my feet according to the punch biopsy results), provide about 50% of the healing mechanism of wound healing. So the calluses turned in to wounds (because I was pool jogging over an hour a day all summer and the chlorine dried out the skin even worse than the lack of sweat). I am getting Laytex waterproof swimming socks to fix this problem. I am also going to see a wound care Dr. I think this will help a lot of the burning feet problem although it will never go away...as I am slowly finding out....Sorry for the rambling but I am, as you are, frustrated beyond words. It is odd that there has been no discussion in this forum on wound healing problems due to SFN?? Not sure yet if I understand that "protocol" John and others are talking about...It sounds promising. Pam
Hi RWinney
Thanks for all the great info.
BTW, it sounds like you have a great doc.
You indicate that you take lidocaine infusions, and that the next step may be IVIG.
May I ask what your diagnosis is? I thought that IVIG was indicated for CIDP, Did you have a test which indicates you may be a candidate for IVIG?
Keep up the good work, and best of luck!
Jeff
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@rwinney
Just wanted to say that in my case I disagree with your doctor about opioids. When I was taking Fentanyl it did more good than anything else I tried.
Jake