New - small fiber polyneuropathy?
 

Hello,

I am new here. I have some strange symptoms since midd April. I noticed strange vision (like migraine aura) for one hour. Than after one week, I got some burning sensation in my upper back, chest, arms, it went away after two days. Than I got some shortness of breath for some days and tired legs. Ok, it went away, but after a week I started to feel tingling/vibration in my toes for two days, than it happend also in my entire legs. It felt it more stronger when I was in bed or when I did something with my legs, it was a feeling of electricity. Than after two weeks I began to feel these tingling in my upper back and head. After some days a little bit of tingling in my face and tongue. Now the face and tongue are ok, but it began in my arms. So tingling is constant, but not so severe as on beginning, but it spread in my entire body. Starting with toes, than every week or every few days an additional part of the body was involved.. I dont have muscle weakness or pains. FOR NOW. Two days ago Ive noticed that I have a strange feeling in my left foot, as if I do not feel well the outer part of the foot (nubmness).
I am very scared that this is a very quick progression of symptoms (progression in days). Has someone similiar issues?
I am sorry for mistakes, I am not a native speaker.
My neurologyst says it is anxiety, but I know this cant be, because it feels like tingling skin and it progresses. He did not ordfer any test, so I have to make it on my own, first I will have EMG and than MRI of the neck. Can you die from it?

Hi barb,

If this is a small SF neuropaty then a EMG testing won't show anything.
Neurologist usually wait how this is progressing I know this is very frustrating we all go true the same emotions.
Maybe MrsD can give some more advice

Hello Barbie
 

SFN will make the most solid of people get anxious. Symptoms vary greatly and move around like a cockroach when the light comes on. I am not an expert, but I do know the panic that you must be feeling. Learn to lurk and read here and you need to know your B-12 number. As for it being fatal, I believe that in very rare cases of auto-immune induced neurapathy that affects the autonomic nervous system,maybe. Mostly it is a bunch of symptoms such as you describe that, depending on many factors, can be managable. Others here with matching diagnosis(dx) can be found with search function. Search Small Fiber and click show posts. Good Luck, Ken in Texas.

Welcome barbie86. :Wave-Hello:

I no the feeling of the left
Foot being weird. Mind is weird.
I am not sure what is happen with me yet either . I am wait to talk to a neurologist . My little 3 toes on my left foot feel numb. So I dunno.
They blamed all my symptoms on anxiety , until I seen a internist who said it was not aniexty . Keep pushing till they help u.

Pn usually strikes suddenly and acutely, mines began in janurary where it came out of nowhere, now im left with sensation loss, loss of smell and PN.
Sounds like you have PN. you can get an MRI, or EMG, but you should also test for DIABETES, thyroid, and vitamin deficiencies, since you havnt indicated you took those already. If the neurologist still blows off your symptoms(they often do with people with PN), go see another doctor.
I have a very similar situation, where the doctor implies that its stress and i am making it all up and seeking attention.

I'd say many of those symptoms are real. However your doctor is likely also correct that your fear is making things appear worse than they actually are at this point. I did the same routine when I first got scared about symptoms that turned out to be a full on type of neuropathy with many of the classic symptoms that come and go all the time.
This is something you will likely get used to if you can keep a little cool and do some deep breathing on a regular basis.

In fact since my neuropathy my general health has gotten much better and psychologically I can handle everything better in the rest of my life. I'm a lot braver now than I was before and often happier. This disease has been a major wake up call for me and so a mixed blessing. I wish you all the best on your quest. You may learn a lot about yourself and more than you suspected

Hello, thanks for your posts.
So, I will have EMG tomorrow, MRI of the head without contrast on Thursday and MRI of thoracic and cervical spine on Friday. I will pay for everything by myself, because I cant wait any longer. My drs appointment is in 10 days, so we will see. I this all will be clear, is there another thing I can test?
I am so affraid that I have CIDP, because yesterday and today till noon it was great, no vibrations and tingling in my body but now there it is again. When I am lying in my bed and I turn around or do sth with my legs or arms or spine, I fell those "walking ants" or vibration for some seconds it soooooo annoying.
Do you feel that too? Is it constant? I have constant tingling, except these last two weeks I've noticed that I get constant tingling for three days, than one day it is ok. Its like progression of cidp. It feels like my skin is sensitive to movement.

Hi Barbie,

If I'm not mistaken, CIDP features muscle weakness, and you said you have no weakness. I wouldn't be worrying about that right now.

I think most of us here get worse as the day goes on. I have the fewest symptoms when I first wake up in the morning, and then things progress throughout the day. That seems to be our "normal."

Many of us also have good days and bad days. Some days aren't so bad, and then suddenly, we're hit badly again.

Try not worry too much now as anxiety make symptoms much, much worse. You may "just" have sensory small fiber neuropathy like a lot of us.

Janie

I have SFN, have had it for a year. You sound like you have many of the symptoms. i will say this before I go no further, you can not die from SFN (specifically). I can not diagnose you for sure and would never attempt to. If you neurologist says you have "anxiety"? With all due respect, he is a jerk and find a new guy who is willing to do the proper testing. The best way to confirm it is skin biopsy. They will go through some other tests first because of insurance. But, small fiber will only be seen from a skin biopsy. There is no reason they haven't offered to at least prescribe you a low dose Gabapentin to hep with the pain. Gabapentin also helps with anxiety so i can't imagine why that Neuro wouldn't at least consider it.