Peripheral Neuropathy

Hi Karen @fue, That's a good question that members with experience might be able to compare with their symptoms and experience but it's something only a doctor or neurologist can diagnose. Mayo Clinic has some information here on how autonomic neuropathy is diagnosed here - https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836.

This research article has some information on fasciculations (uncontrolled muscle twitching visible under the skin) and mentions as one of the symptoms associated with neuropathy in the motor nerves - https://www.ninds.nih.gov/health-information/disorders/peripheral-neuropathy.

It might be helpful to make a list of your questions and take them with you when you see a neurologist, or maybe even when you talk with your GP.

@johnbishop Thank you. I will have a long wait to be seen by a Neurologist, possibly a year or more. As helpful as my GP is, I fear it will be too late, the damage will be done.

@fue you might find it helpful to scan through the following related discussions.
-- Persistent Muscle Twitches throughout Body
https://connect.mayoclinic.org/discussion/persistent-muscle-twitches-throughout-body/
-- Benign fasciculation syndrome (BFS)
https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/
-- Peripheral Neuropathy and benign fasciculation syndrome.
https://connect.mayoclinic.org/discussion/peripheral-neuropathy-and-benign-fasciculation-syndrome/

@johnbishop Thank you. You are always trying to help us. 😘

I would push my doctor to get me in to see one. Good neurologists are hard to find. I would look for rating and do some door knocking. Look for reviews. Someone will get you in. If you knock enough the door will open. Best of luck! Keep pounding!

I have sensorimotor polyneuropathy diagnosed and autonomic undiagnosed. I know I have it though as I dont get hungry, feel full or have regular bowel movements anymore.

I also have muscle fasculations in my calf continuously. The fasculations are from the motor nerves and I dont remember when the autonomic stuff started but thinking back all three, sensory, motor and autonomic have been present all along. I showed the fasculations to my neurologist (dont have one anymore) and he asked me if it hurt and that was it. Nothing else. I also brought up my bowel issues and he stopped me and told me cant do nothing for that. The next appt he told me he didnt need to see me anymore.
The other only reason Im bringing this up is I had a long wait to see a neurologist and it turned into dissapointment and no answers. Maybe prepare your questions, find a neuro who is familiar with this condition if you can and I guess get as much info and help from your gp as you can.

Im not in the States so I cant pick and choose the specialists I see (ie. fire my neuro) so Im out of luck.

I tried to upload a video of my fasculation but it didnt work.

@megidigo I'm in Wales. Good to hear someone else calling it polyneuropathy. All experts insist on calling it peripheral.
As well as fasciculations in neck and torso, I feel too full after a bowl of soup. I have been getting terrible indigestion and burping constantly. I have halved my portions and am eating more fibre but still find bowel movements very slow. My GP has recently put me on Thiamine and B compound twice daily. I am awaiting blood results.

@fue
@fue thank you for your reply. Your bowl of soup comment reminded me that before I had any motor and sensory problems that there was a period where I couldnt finish any meal. I wouldnt be able to finish even half of a burger or a bowl of salad….now its the opposite as I mentioned - do not get full.
I had forgotten about that.
Looking back I think this was showing its signs earlier then I previously thought. Hope you are doing ok, Im really not admittedly. Has your doctor given any helpful advice other than the b compounds or do you have any advice living with this? Are they looking for anything in particular with the blood test.

That neurologist I saw told me not to worry its just neuropathy when he discharged me. Im really scared.

@megidigo One Neurologist told me not to worry as it would stop at my knees. 😂
Registrar GP seemed to be understanding and helpful. He's checking lipids and HbA1c. I can't remember what else.
I also have dry eyes which could be connected too.

@thankumayo
‘Most’ neurologists know little about & suggest nothing but drugs that do nothing for neuropathy but do cause other health problems! There are tons of posts on here about some supplements & procedures that may help temporarily! I try new stuff all the time-do research-I’m taking 3 new natural supplements that have to do with”blood flow”! Makes sense to me!
Always check your supplements to confirm 3rd Party Lab testing! Otherwise the dosage is too low & probably not even what they claim! So sad! Remember all people react to meds or supplements differently! What works for one may not for another! Keep trying. Hot foot soaks w/epsom salts, magnesium oil, oil of oregano-both have healing properties, AC vinegar, and any essential oils you like. Read the facts & history about the “meds” docs prescribe. After my nerve conduction studies on my feet & legs, the neurologists only comment was, “Sorry, nothing we can do!” At least he didn’t suggest the toxic meds!
To be clear, I certainly take pharmaceuticals-not against them at all-but doc’s are not going to suggest them & know little about them. They are a member of Big Pharma w/o a choice I assume. Good luck to all.