[EE03]

I don't have the copy in hand, but the doctors office called and said the results are negative for SFN. I've got calls into both the neurologist and my PCP to inquire about other tests, specifically DNA types for hereditary causes.

[lynn01]

Originally Posted by EE03

I don't have the copy in hand, but the doctors office called and said the results are negative for SFN. I've got calls into both the neurologist and my PCP to inquire about other tests, specifically DNA types for hereditary causes.

Can you describe some of your symtoms that you have been experiencing? And also any lab work that's been done ect.

[EE03]

Originally Posted by lynn01

Can you describe some of your symtoms that you have been experiencing? And also any lab work that's been done ect.

Numb feet which I keep injuring without knowing(till its too late-including breaking a toe), shooting and stabbing pains in feet without any provocation, burning in feet, strange feelings sort of like vibrating or like sparklers are burning, if you can imagine that. I also get stabbing, shooting pains in my lower legs, and I've had electrical pains in my feet and lower legs. I get a lot of muscle cramps and tightness and deep tendon twitches, all without provocation to all of my extremities. I get radiating pain in my wrists and I don't feel temperature correctly, ie. the palm of my hand over the electric burner feels warm, while over the wrist, I feel the true temperature (which is super hot since the burner is glowing). I have radiculopathy in the cervical and lumbar spine which also complicates all of this and I have a bunch of other nerve problems so its sometimes hard to distinguish symptoms of one condition over the others. I have been maintaining that I think there is a heriditary link, but for some reason, this doctor seemed to strongly feel that my dx was SFN. I've had several EMG's and I've been tested for lots of auto-immune sorts and also several screenings for lyme. All have been negative and I understand that the lyme tests are tricky and often have false negatives, but c'est le vie. I keep asking and get tested occasionally. Oh, and I've had a postive tilt table test. So if anyone is still reading and has any thoughts over where I should try to direct this guy to go, I'm all ears and I'm actually pretty frustrated. I just didn't put much faith in the SFN dx when he came up with it.

As to heriditary suspicions, my father complained of feet that he didn't feel, he accidently cut off part of an extremity without feeling it, his legs would give out, causing him to fall numerous times, and he shuffled his feet. When he hit 80, the doctors dx him with "a touch of PD" but the foot shuffling could be indicative of his inability to feel his feet and the falls could have also been from some form of neuropathy as these occured way before his dx of PD, ~20yrs prior. He also could have suffered from syncope and he developed an irregular heart beat around 60. He was the type of man who wouldn't complain about things to a doctor, so a lot of this info is through his childrens experience with him.

Anyway, I'm still in limbo here but drafting a letter to my neuro.
ETA: I forgot that I also get a lot of burning pain in my feet and legs and I've already had one incident where my right leg was completely numb and buckled out from under me, causing me to collapse. That started this whole adventure. First neuro who tested my just dx idiopathic polyneuropathy and lumbar radicuolopathy.

[Sheltiemom18]

The GOOD news is that you don't have SFN! Believe me, you wouldn't want it. Hope they find out what you do have and that it's very treatable.

Take care,

Sheltiemom

[lynn01]

Some symtoms such as cramping, and numbness could be large fiber involvement but because none of your test so far has come back positive for nerve damage, I don't know what else to add. For the tempature sensations, I do believe that is caused by a small fiber nueropathy which you said the doctor ruled out by the biopsy.

[EE03]

Originally Posted by lynn01

Some symtoms such as cramping, and numbness could be large fiber involvement but because none of your test so far has come back positive for nerve damage, I don't know what else to add. For the tempature sensations, I do believe that is caused by a small fiber nueropathy which you said the doctor ruled out by the biopsy.

The biopsy could be normal if its in the early stages of the condition. I was reading someones post on here which discussed that and it does seem reasonable. I know the temperature sensation is consistent with SFN. I don't want to have it, but at the same time, I'd really like to know what I have and if there is something that can be done with it. Hence my frustration.

[rose_thorn98]

I don't really have any advise for you, but I just wanted to say sorry that you still don't have a diagnosis. I know how that feels. I hope you get some answers soon. I find I have to also remind myself that there are alot of illnesses and conditions that we just don't know that much about, and at least we are not alone, lots of people are in our boat too. May we all find our answers sooner rather than later.

[invisable]

Originally Posted by EE03

The biopsy could be normal if its in the early stages of the condition. I was reading someones post on here which discussed that and it does seem reasonable. I know the temperature sensation is consistent with SFN. I don't want to have it, but at the same time, I'd really like to know what I have and if there is something that can be done with it. Hence my frustration.

I am no expert, in the frustration stage myself.....just got a skin biopsy, waiting for results after one and a half years of symptoms and no answers.

I completely understand your description of sensations, they are hard to describe and everyone feels and describes them differently. I actually described some of my feelings as sparklers too.

I have done a lot of reading on different types of neuropathy, you have all the classic symptoms.........wondering if you may be too early too reveal on tests.......when did your symptoms start?

Are you are any medications to help with pain, etc?

[EE03]

Originally Posted by invisable

I am no expert, in the frustration stage myself.....just got a skin biopsy, waiting for results after one and a half years of symptoms and no answers.

I completely understand your description of sensations, they are hard to describe and everyone feels and describes them differently. I actually described some of my feelings as sparklers too.

I have done a lot of reading on different types of neuropathy, you have all the classic symptoms.........wondering if you may be too early too reveal on tests.......when did your symptoms start?

Are you are any medications to help with pain, etc?

It depends on what are actually symptoms of PN. Some occured as early as 2005 and others in 2008. I'm on a variety of meds, but not the typical ones used to treat nerve disorders as I can't tolerate those meds.

[Hermes]

Originally Posted by EE03

I don't have the copy in hand, but the doctors office called and said the results are negative for SFN. I've got calls into both the neurologist and my PCP to inquire about other tests, specifically DNA types for hereditary causes.

I had a skin biopsy in May and it came back negative for SFN. An interesting note at the bottom of the report, by the doc who read the results up at Johns Hopkins, was that another biopsy in a year might be informative. So did he think it might be developing or what?

My official DX is Idiopathic Polyneuropathy. When my local neuro referred me to the pain treatment center at Hopkins it was for diffuse large fiber neuropathic pain. I asked and it is large fiber because they ruled out SFN. I plan to talk to he docs up at hopkins when I'm up there in a couple weeks about additional tests to check for autonomic effects of PN as I'm having symptoms and the docs down here don't do any of the tests.