I'll make this short.Almost a year ago my whole body started being in pain,followed by all sorts of strange happenings.Well after a few months of this pain the paresthesias started.My arms would be numb,my legs,etc.Only I had functional numbness because I could still use them.Not completely numb,just felt that way.The numbness was a constant for a month at a time on top of pain I thought I would loose it.Then the numbness subsided and started coming and going.I've always had the electric shock feelings throughout.Fast forward to now and I have the nerve shock pain,pins and needles feeling,hot burning pain,the tingles,random body parts go numb for hours at a time and go away luckily.I have digestive issues so I'm assuming I may have a slowing of the digestive system from damaged nerves.I feel very uncomfortable in my body off and on all day.I hate it.I wish my neuropathy were localized to one area so I could just have the doctor say cut my leg off and let that be that!!!I have other issues with this but this is just the jist of everything.

Thought I would introduce myself and I look forward to learning from everyone on here.I hope I did this correctly.I didn't see a new member thread.

Hi AintNoSunshine, you are in the right place the people here are very helpful, you will learn a lot from this forum. You have not mentioned if you have seen a neurologist or what tests you have had. I have had various blood tests B12, D3, Glucose etc. I also had a nerve conduction test and from that I was told I had Small Fibre Peripheral Neuropathy. I am seeing a neurologist in July, so I am starting to write everything that is happening to me. You seem to have a new symptom each week. Doctors have the habit of making you forget what you are there for so I thought if I write things down so he could not side tract me. There will be other people come along to help you, I just thought I would say hello and welcome you.
Take Care.

Hi I am sorry of your pain. Have you had complete blood work to rule out other conditions that may have led to the nerve? You mentioned stomach condition and I wonder if you have been tested for gluten intolerance? I was also going to ask what dx tests you have like an mri emg? Are you under any treatment with meds? Well welcome to the boards and hope you can find relief soon

This all began last year in March.It began with being dizzy,then pain,then numbness,brain fog,etc. It just kept progressing into symptom after symptom.Well I had my first EMG in June.I get the phone call June 25,"you have a touch of neuropathy,it's so slight it barely showed up on the test but it is there"This was ordered by my regular doctor and done by an EMG specialist.So then I start seeing a neuro,this guy wasted 6 months of my life telling me the neuropathy was nothing to be concerned about and he didn't know why I was having all these symptoms.He was so stupid.He talked 500 mpm and cared more about his plants than he did his patients.Real weird guy.

I got another EMG I think in September,results still the same and no change.I get another neuro in December.Well guess what he wants to do his own EMG.I couldn't get one until March.We go over the results they said something along the lines of "possible very slowly progressing neuropathy"But he said that it was because of the needle part in my feet was off by one on both sides and that could be from everyday wear and tear of the feet.So I accept this.But then I start to feel worse with the tingling and numbness so I called him and he calls back 3 days later and gives me the sometimes we don't know speech.I told him I wasn't satisfied with that answer and he said I could see his NP to see if she had any ideas.Well thank God for this woman.She spent over an hour talking with me and is the one who ordered my sweat test and tilt table.She even gave me 2 orders for PT one for aquatic and the other for regular,which I will be requesting they do ultrasound therapy instead of wasting my time with stretches I can do on my own.And on both orders it says treat patient for small fiber neuropathy.I think sensory.

But in the midst of all this I have had a gazzillion tests trying to figure out what was wrong because no one thought it was neuropathy.2 ANA tests,a 3 hour glucose test,2 B12,1 Sjogrens,2 upper GI,1 brain MRI,1 whole back MRI,abdomen CT scan,2 head CT scans,a few chest Xrays(had BAD chest pain for months),a sleep apnea test,abi test(checks for PAD),a cartoid artery test(checks the atreries in your neck for blockages,was wondering about strokes)an EEG to check for seizure activity,I even went to cleveland clinic where I saw Richard Lederman for all of an hour and he pretty much told me it was all in my head.I was so excited that day to think I was going to get an answer after all this was Cleveland Clinic,and a huge dissappoint that was!!!!

So that's my whole story and all my tests I can think of right off hand.The new neuro,the NP,ordered a heavy metals test,a vitamin D and E.
Someone mentioned a new symptom every week.That sounds like my life.Right now I can't move from lying to standing without my back tingling something fierce and with the POTS I have to lay down periodically so I can think straight and not be so dizzy and have a headache.My numbness sorta comes and goes,it just depends.Like recently my hand and feet have felt this way but then they'll feel normal.However my feet feel like they're vibrating when I stand up and this is almost a constant.There have been times where I've only had minimal pain and felt like I was getting better and then bam it comes right back!!!

I see the stickies talk about supplements but are there any forums where people have stated how these supplements have helped them?Does neuropathy ever go away?Some sites say it can and others say not if there is no underlying cause.I'm kinda scared.I'm sick of being uncomfortable in my own body and the doctors having no clue what's wrong with me.Thanks for listening.

Oh...POTS is a type of PN....it is in the family of autonomic neuropathy or dysautonomia....I'm in the same boat, only my ANA finally went +.....but no specific disease.

The reason you have all those symptoms is that autonomic neuropathy affects just about every inch of your body.

Many of us have had a skin biopsy for nerve fiber density and also autonomic testing.

Why are good neuros and good rheumatologists sooooo hard to find??

Yes, you are scared....no doubt. I was really scared when all this happened and now after 6 years, I have grown to understand that abnormal is the new normal. There is nothing that surprises me. Either I over do my analysis of my symptoms or ignore pivotal ones....no happy medium. The zaps, zings, on a rocking boat, odd vision, hearing, tingling, numbness, constipation, nausea, bloating, early saiety, palpitations, and on and on, are all part of small fiber neuropathy.

Your body will feel very foreign....It is like you are in there somewhere, but, it is not you, like the you that was.....BUT you are in there, and you will find a way to cope. Because we sense ourselves in our environment via our small fiber nerves, how we perceive things changes. You can also become more autonomically aware of functions that once were ignored...you have no choice when your heart is pounding or your blood pressure drops. It is a very frightening experience.....not for the faint of heart.

Cyclelops,sounds like the story of my life the past year.I forgot to mention I have the small fiber/autonomic neuropathy tests June 15.Sooner if they have a cancellation.Also with all those tests I mentioned having,they all came back negative or perfect of course,except the EMG's.All my doctors have been treating me like I'm crazy.Although I pray that it's not neuropathy,it would feel wonderful to go to all those doctors and throw my diagnosis in their faces!!!

I feel your pain, believe me. Took me 14 years to get a diagnosis of mixed axonal and demyelinating peripheral neuropathy. Talk about finally feeling vindicated!! All those years I was lead to believe there was nothing wrong. I even think my family thought I was crazy. My husband tried to be supportive but after three neuros telling you there is nothing wrong, well, who could blame him for thinking I was whacked?? I have an appointment at "the" Cleveland Clinic on 6/14 and after reading about your experience, I am nervous to say the least. After years of being a nurse, I have learned to be aggressive (I like to call it assertive) and I don't take crap from doctors. Hopefully, I won't have to bring the ugly stick with me to my appointment. I will let you know how my experience goes. In the meantime, I hope you find a way to come to terms with what is happening within your body. No, we don't like it but stressing over it only helps to escalate the process. I try to walk each day. That is my de-stressing time. Try to do something you enjoy and allow your mind to focus on that rather than on the PN symptoms. Easier said than done, I know. I just keep praying that "our" good days outnumber the bad days.