Polyneuropathy. electric cell signaling treatment (ECST)

Posted by darina @darina, Nov 15, 2023

Hello, everyone!
I have a question. Recently I was diagnosed with Polyneuropathy.
This started kinda strange way-about year ago , after I was prescribed metformin (I am pre-diabetic A1C was 6,5-not so bad.), I suddenly got burning pain in my lower abdomen that soon spreader to up and down- hips, abdomen and even ribs area-tightened of the chest.They checked everything- kidney, bladder, CT scan of whole body- nothing. Eventually pain got less, and mostly it was just kinda sensation.
Sorry for my English, btw, it is my second language.
I had some pins and needles in ,in my feet mostly, but sometimes and barely. I have heard about the neuropathy, but I though, maybe, if I would keep my sugar under control..also- well, it is happening with old folks..:)-I just turned 60…
So, I got my sugar under control-(5,5). But, literally 3 weeks ago- I suddenly got pretty strong burning pain in my legs.. first.. waiting for couple days I finally decided to call my doctor-she did some tests, found just vitamins B12 deficiency/178,and maybe some traceable ANA.She gave me gabapentin and sent me to rheumatologist and neurologist. But they would take new patients-in March .. lol
Meanwhile-my symptoms are getting worse and changing pretty much everyday…Peens and needles and burning pain-not so bad yet-now is all over my body- literally-from head to toes, chest and sides tightness , some numbness of fingers.. pain in the sides of the neck.. like a cord. not fun.. also- burning pain in lower abdomen.. how it all started
Now I have a diagnosis-"Polyneuropathy ",and waiting to see a doctor- hopefully-earlier then March..
So- my question- if someone has something like this- what name for this exactly?how fast it progressing?what to expect-losing ability to walk and etc?
What could help?
I read about the neuropathy -second stage -is point of no return.. so- I am trying everything now.
Friend of mine went to Neuropathy treatment clinic- they use electric cell signaling treatment (ECST). Looks like they got some improvement.
Does anybody have something like this?Did it help?
Thank you!
Have a blissful day.
Darina.

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | Nov 15, 2023

Hello @darina, Welcome to Connect. There is another discussion on the electric cell-signaling treatment (EcST) and also several others on polyneuropathy that you might find helpful to learn what others have shared:
--- Does anybody have experience with SANEXAS for neuropathy?: https://connect.mayoclinic.org/discussion/sanexas/
--- Idiopathic Polyneuropathy: My endless journey to a near-diagnosis: https://connect.mayoclinic.org/discussion/idiopathic-polyneuropathy-my-endless-journey-to-a-near-diagnosis/
--- Polyneuropathy: https://connect.mayoclinic.org/discussion/polyneuropathy-2/.

Also, the Foundation for Peripheral Neuropathy is a great resource for research and treatment information. Here is a list of information on their website for polyneuropathy: https://www.foundationforpn.org/.

You mentioned vitamin B12 deficiency. Does your doctor think it might be connected to your polyneuropathy symptoms?

darina | @darina | Nov 15, 2023

In reply to @johnbishop "Hello @darina, Welcome to Connect. There is another discussion on the electric cell-signaling treatment (EcST) and..." + (show)

Yes ,my primary care physician thinks exactly like that! That this is related to vitamin B12 deficiency …
Really, could it manifest like that? Pain,,burning and needles all over?
And if it is-well…
Hopefully, it’s still treatable.and reversible:)
but my symptoms started year ago with some kinda acute low abdomen pain. -still -unknowing origin.
I didn’t know what was my level of B12 then. I have heard that metformin can cause vitamin B12 deficiency . But usually it is happening several years on the row.. She prescribed me B12 injections-first , she said, once in month. Now- every day for a week, and after-once in week 3 times and I am taking vitamins too now:)
It just strange, how suddenly and strong it started and how quickly progressing…
Like-everyday-something new. I am having pain in places that I never had before…
Also, about ANA-she said-positive ANA does not appear to be significant.
Actually, I am scheduled to start treatment in this clinic -NEuropathy treatment clinic of Texas next week. But I didn’t have a consultation there yet.
My insurance supposed to cover it.
Do you think I should postpone it? Of course, would be better to see doctor before, but-You see, I can’t see neurologist soon. Maybe- best case scenario-in couple month only.
Pain is getting stronger , gabapentin it’s not helping much, I am waking up with numbness fingers..
So- obviously I am worried and want to try something, until it’s not too late.
Year ago , all I was taking, just Exedrin sometimes-for a headache …:(
Thank you for your answer!

John, Volunteer Mentor | @johnbishop | Nov 16, 2023

In reply to @darina "Yes ,my primary care physician thinks exactly like that! That this is related to vitamin B12..." + (show)

@darina, I forgot to mention another discussion where you might find other members with similar symptoms:
--- Vitamin B12 deficiency and small fiber neuropathy: https://connect.mayoclinic.org/discussion/vitamin-b12-deficiency-and-small-fiber-neuropathy/

As far as postponing a treatment that may provide some relief for your pain, that's a question to discuss with your primary care doctor. If it were me and the treatment was covered by insurance, I would probably give it a try to see if it made a difference since I think the treatment involves a series of appointments and you may find relief early in the treatments. If not, I'm guessing you can stop going. You might find the post by @duquer on his experience with Sanexas (EcST treatment) helpful - https://connect.mayoclinic.org/comment/701008/.