New Member here with massive new onset of neuropathy symptoms
 

Hi Everyone,

Glad I was able to find this resource of information and good people. Thanks for having me!

My Story:

I have had PN in my feet since 2018. Up until this point, I only had very minor symptoms of burning pain in my sole of my feet and numbness in my toes. It would present for a day or two and then go away, sometimes for months.. Because it was so minor, I would not give it much thought, as I am very busy with work, and family/kids.

My PCP diagnosed it as PN, and checked for diabetes, which I did not have. I never had an official diagnosis however. Just said to keep an eye on it. The last time I made a note of having pain in my foot was April of this year. Did not have any symptoms at all from April until now.

I went bed Friday 9-17-20 feeling great, no problems and slept like a baby. Woke up Saturday to an entirely new reality, a nightmare more like it! Burning pain not only in both feet, but in both hands as well. Within hours this evolved to include tingling, zapping, crawling, burning sensations in my legs and arms. By the next day, this sensation (paresthesia)? had taken over my entire body, even my face.

Now on day 9, I am still having the same symptoms, which have not improved. I am noticing a pattern where my symptoms are the worse in the morning, then subside as the day goes on. During the day the symptoms can wax and wane. My feet only feel normal, not wearing shoes. If I put shoes on and start walking, they become pins and needles with burning pain. When the evening comes, the symptoms get worse again full body. When I lay down to sleep, my entire body feels like ants are crawling over it. I then start to get a burning sensation on my feet, hands, torso, arms, and face. Needless to say, I have not slept well at all. Thankfully I work from home!

So here I am, frantically researching this insidious new health problem. I have yet to wrap my mind around how quickly this all progressed. I went from feeling the best I have felt in a long time to pure suffering, and mental anguish. How can it be that nerve damage occurs so quickly over night? I thought this was supposed to be a slow progressing disease.

Anyway, I have an appointment with a Neurologist tomorrow. I am not sure what is going to happen on the road ahead, but I can't help but think about my family, being a Husband and Father. The support I provide, and all that will be required of me to fulfill my responsibilities if this is the new normal, with a prognosis of getting worse. Those are the thoughts that consume me now.

Thanks again, for letting me share my story. I am sure I will be on here frequently in the days ahead with questions and thoughts. If any members have words of wisdom or suggestions, please share. I am 48 years old.

Thanks!

HaveMercy

Well there is a LOT of help and support info here and the PN forum is loaded with supports.

Do you have any idea how the neuropathy all started.. think on this.

Alcohol, lots of sugar too much sugars can do it, foods yes.

Pharma drugs, yes some.

Surgery yes.

Mine started from hip replacement in 2010 and I've done a lot of supports to calm the burn/tingle down.

Inosine is one supplement that's helped me a lot and I post about it in PN group.

Topricin homeopathic lotion is a great pain calmer too. There are many topicals one can try and have some favorites.

I've never visited a neurologist as I do my own research and lots of help here...the MD's will slap us with their drugs...I don't want those.

HI Caroline,

Thanks for your response and support.! I was a casual drinker, but I don't drink anymore now for a year. Got to where just a couple of drinks would make me feel lousy.

I have a big sweet tooth, so yes I did eat a lot of sweets. I did not think this was a problem with normal blood sugars. As soon as this problem hit, I have cut out all sugar and carbs.. I bought a glucose meter and have been testing my blood twice a day for a week.. All normal.

I don't take any prescriptions

No surgeries

So if this was caused by sugar intake or my past moderate alcoholic intake, do you think it could be reversed by cutting all that out? If that is the cause, I must have some genetic disposition, because no one else I know has got it from that.

Thanks!

I would think it all can improve, changing what we put in our mouths....how much damage has been done, is the key now.

Like in my situation and it's 10 yrs since major surgery, I've improved but some nerves are dead forever...

HaveMercy check out the posts from glenntaj here. He had a similar bodywide presentation overnight like you did except he had no symptoms at all before that. I'm not sure how far the posts go back here on this incarnation but he has described his journey many times and is doing much better now.

Welcome HaveMercy. :welcome_sign:

Kitt

Hey Have Mercy,

I read your heartbreaking post and noticed that you must have had your appointment with the neurologist by now. What was the outcome?

I can't add anything I'm afraid, but offer my support and sympathy.

Take care,

Atty

Welcome, HaveMercy,
I can't come up with any answers for you but I hope that your appointment with a neurologist was helpful.

Quite often some medicine a person is taking turns out to be the problem--but you don't mention taking any.

Best wishes to you and your family.

Hi Agate,

Thanks for the support. My appointment with my Neurologist was not that great really. He seemed unconcerned and said it sounds like non length sensory neuroptathy. He gave me a script for blood test and and cymbalata. I am now looking for a 2nd opinion.

The only thing I was taking before my condition started was taurine, L-argine, and L-caratine amino acids, and some vitamins. No prescription drugs. I have since stopped those with no change.

My symptoms are the same now 3 weeks into this.. Full body parathesia, and burning pain in my feet. :(

HaveMercy, you've seen the neurologist only recently. Neurological disorders sometimes take time to improve--or even to be figured out. Why not give the Cymbalta a chance? It seems to be a standard treatment for the condition your neuro has diagnosed, and it just might help. In case you haven't looked at the information about it:

Cymbalta Uses, Dosage, Side Effects & Warnings - Drugs.com

And here's am abstract of a fairly recent article about the diagnosis and treatment of small-fiber neuropathy:

Diagnosis and Treatment of Pain in Small Fiber Neuropathy