I read about sfn and wonder if the prolotheraphy shots did this to me. is that possible or does it have to be from your own immune system? i seem to have the symtoms, especially the pain of burning and kniffing and tight band around the ankle. i do not think my doc would give me a punch test.
how is it that the ivig helps. does it heal the nerves or stop the inflamation, or stop the toxins or??? i had ivig a long time ago for something else and i felt better energy wise and health wise. comments
s

Once more, you need to see a neurologist,and cheched from head to toes.
You need to do this as soon as possible..Sue Your pain may be stopped
at the ankles,if your lucky...

Steff , you receive donor anti bodies which can remove and/or replace your own antibodies which are attacking your own body. it is also an inflammation suppresant.

yes- i know i didnt go to the doc soon enough-i thought there was nothing they could do and so far there isnt.
i went to neuro twice-he didnt say -just pain. went to pain mang and he said PN. i see two more docs this week. it is probably too late then. the pain is all the way up to my spine including the burning.; i have fibro and disc disease so as it was happening, i thought it was these two getting worse. i didnt know.
so if it sprends is it too late?
i might not even have it except i fit the symtoms, and i may have had it for years. i hurt all over and it has always felt electric in quality. docs always said fibro. i wonder about it all now as i also have carpal tunnel and am getting ulnar nerve pain too.
i was just posting to see what the symtoms felt like.
i used to get ivig for sore throats and fatigue. i always felt better after (months, not the day of) but i do not remember it having an effect on my then "fibro" pain.
i guess i just wish it was something that might help the inflamation.
good luck getting a doc to precribe it.
anymore info is great
steff

WHY did your doc give you IVIG? IF it helped why was it stopped?
You must have some auto-immune component that showed during either blood tests, spinal tap or both...usually in combination with nerve conduction studies to be able to order such a test.
In my case, my PERSUIT of a doc who would test me [along the lines of LizaJane's worksheets] and once docs DID test me was the road to PT and IVIG which have been the only things that really truly help me.
Its up to YOU to find out what all has been done and learn as much about how docs have come to any conclusion as you can.
The auto-immune issue? Well, it's simply your immune system going totally haywire. IVIG steroids and pain killers are the 'modulators'. Treatments to stop things from getting worse. The vitamins, minerals and enzymes are boosters to your systems to help heal those nerves and maybe re-program the processes that have gone off.
As for medications. Take a good look and read in the 'stickies' at the top of this forum. There are over 50 different medications used for PN and one of them may have your name on it! It was my 3rd or 4th meds try to find Keppra worked for me. Neurotin was, essentially 'evil' for me. I think it was the hallucinations that were most disturbing, tho the sleeping 18 hours a day were an indicator that I didn't want to LIVE that way either.
Some of us have only small fiber involvement, others a combo...I have the combo. Any which way you look at it, especially at first...well IT PLAIN OLD HURTS! It can heal..it just takes a very, very LONG time!
Enough for now I've a sudden thunderstorm overhead...don't want to fry my 'puter? - j

Very Well Put J And Very Wise Not To Burn Yourselve Up.heh Sue

what i was really trying to find out was what are people's symtoms with the small fiber to see if i should push for this test or treatment. to see if it would help with the burning. there are no guidelines for someone injected with prolotherapy that gets PN like this.

i was on ivig BEFORE this happened from a blood test that showed my ivig low at my request. this was years ago. after so many treatments and another blood test that came out normal, i was taken off.
it had nothing to do with the pain at the time, but tiredness and frequent illnessess.

currently tried lyrica (rash) and neurtontin, (closed throat) havent found one yet. have many other drugs i cannot take because of side effects working on finding one. keep going to docs and trying to find one that has a clue as my PN is dx as the result of no other dx.
s

HI Steff!
You sound so tired....and I'll bet you are! It's SO tiring just going to dr. after dr. and not finding one who can help you! I've always thought that we shouldn't have to pay a dr. who doesn't help us! It gets SO expensive going to dr.s not to mention the time involved. Plus all the pain that you still have to deal with because they can't help you! It's a crazy roller coaster! I hope your weekend hasn't been to bad.

Hi Steff, for Small Fibre damage the symptoms are insensitivity to heat and/or cold, tingling, numbness, like an electric shock, or even walking on broken glass feeling, you mentioned tiredness before so i am wondering if you have had a b12 levels tested, was there any investigation why you were tired and frequent illness ?,
I personally found a lot of relief by using 200 mg x 2 per day Tramadol Slow Release, i had no noticeable side affects with them & Endep helped too, but they do make you feel tired, good to take at night.
Brian

I am new here and I have SFSN. Just diagnosed. Here are my symptoms....

Feeling of wearing boots or like a pressure cuff around my calfs and ankles.
Shooting, stabbing pain in my feet that make me jump.
Toothache like pain in my feet, throbbing sometimes burning sometimes like stepping on glass or needles.
Before medication my outer heels were so sensitive I could not wear shoes or drive long. I cant walk or stand very long without these symptoms starting and if I do walk, say to go food shopping, my feet hurt for two days.

Cymbalta has taken care of the superficial pain around my heels and some of the stabbing pain and because it is an anti-depressant I am not down in the dumps. I do have to take a low dose of pain medicine to control the other pain as needed. (Oxetcodone) I am very careful because I don't want to get addicted.

I'm frustrated, and have been on medical leave for a month and a half and can't imagine when I can return to a normal life. I am taking it a day at a time trying to keep busy with my glass art and jewelry/bead making.

I'd love to hear from others......

A in Hawaii