My last tests revealed
 

My B 12 level last month was 888. My EMG done at about the same time was barely abnormal. That is the reason that my neuro suggested the skin biopsy. He said that my symptoms were disproportionate to the findings of the EMG so that is why he recommended the skin biopsy. He was quite certain I had small fiber neuropathy and felt comfortable diagnosing me as having that without the skin biopsy. He did feel that down the road having laboratory confirmation would be helpful in my dealings with other medical and insurance establishments. I am insured by a large bureaucracy not known for continuity of care.

That is a good point Ides, in order to be able to have a diagnosis, which is important and in some cases vital to being found disabled by a private insurer or social security, you may need to get testing done to arrive at that diagnosis. Skin biopsy I would have no problem doing if i had to, sural nerve biopsy no way. I had a spinal tap done to avoid a sural nerve biopsy. I would thinkt hat the results of your skin biopsy should be enough to prove that you have PN.

I will tell you that my board certified neurologist ran every test there is to reach a diagnosis. She was 95% sure I had vasculitis based on all the findings. She suggested that I get a nerve biopsy done as that will tell us exactly what type of neuropathy I have. I had the biopsy done and it was confirmed I had vasculitis. I will caution you, I was on high doses of prednisone and because of that I ended up with an infection at the incision sight which caused me to be hospitalized for 2 days where I received high doses of antibiotics. I do have severe nerve pain at the incision sight which I take medication for 4 times a day. They explained to me that your nerve is like an electrical wire that has electricity running through it and you cut the wire. The electricity that is running through the wire just goes wherever because it is cut. The doctor said the nerve pain may never go away but there is no way to know. Even with the problems I had I would recommend the nerve biopsy so they know exactly what to treat you for. I currently receive IVIG as nothing else has worked to this point. It seems to be helping but have only had 2 treatments so far. I am hoping for the best. Good luck to you.

Biopsy
 

I havent had skin biopsy cause all the NCS/EMG's showed the damage -and since they were (and still are concerned) about amyloid (and vasilitis back when done) had the sural nerve.... it showed the exact type of damage - and if its any consulation tjb - the site where they cut the nerve (about two inches long - out of the back of my calf) - had shooting electrical pains for about 4 years - but now I can touch the scar and it doesnt hurt any more... sorry yours got infected - mine healed in about two weeks but wasnt receiving any treatments at that point to interfer with healing... I was on IVIG last year, and my doc wants to start weekly treatments again - but I have to go thru more amyloid testing first (cardiac and GI now)... the IVIG I did notice helped with energy - hope it helps you!

punch biopsy
 

I had the punch biopsies come up positive for SFN, and eveything else come up negative, in terms of etiology.

I did go thru autonomic testing, which since you have confirmed small fiber, might be worth doing to see if your autonomic system is affected. (Tilt table, thermoregulatory sweat, QSARTS, Valsalva and R-R breathing.) I had no idea I was so substantially affected in that area. It won't point to etiology, just to extent of involvement.

My neuro advised against a sural nerve biopsy, as he said the punch was plenty to confirm the SFN and he was concerned that it would leave me with residual problems.

We still do not have a handle on the etiology of SFN on me, as neither IVIG nor steroids stopped it (and I got a load of both and didn't want to continue due to side effects from steroids and not enough clinical data to support the treatment, he agreed.) I had no problems with IVIG.

I also have some central nervous system component going on.

Make sure they ruled out Celiac, (they probably have already).

You have a lot going on with several disease process, altho ankylosing spondylitis is related to Crohn's, they haven't made the connection yet to SFN and AS...You are definitely a case that should be followed by a research facility, because your case can be one of those ground breakers in terms of linking one disease to another. Although your top priority should be your own health, your case could also help others.

With Crohns, good nutrition is going to be essential, but you know that already. With AS on top of SFN pain control will be one of your challenges.

You sound like you have a good handle on your health care management and have made very good decisions thus far. Hang in there.

Update...
 

Thanks for all the recent posts to my thread.

My SFN seems to be progressing up my leg. I contacted my neurologist, upped my neurontin and tramadol, and will see him next week. Most troubling besides the increased and spreading pain, is the dizziness and lightheadedness I get in certain circumstances. These episodes occur when I shower [is it the increased temperature?] and when I suddenly change positions quickly, especially if it is warm. I will ask about the autonomic testing as it sounds like I might be having issues with that.

I have been having serious dental issues and was sent up the chain landing at a very large teaching and research school of oral medicine. They believe I have Sjogren's because of my severely decreased saliva output. The ophthamologist said I have severe dry eyes adding to the Sjogren's symptoms.

Cyclelops, I have been biopsied for Celiac and do not have that. My neurologist believes that the cause of this is either the Crohn's or Sjogren's. He really would like them to do a salivary biopsy to determine if it is Sjogren's. I need to know and will press to have this completed.

Again, thank you everyone.

Ides
 

I have predominately sensory PN - and autonomic - and have to be very careful when making any kind of "altitutde" change or turning head too quickly, etc.... get very dizzy - and actually fell out of the shower last fall (I have a shower chair but hang on to it to try to use my legs as much as I can).. let go for a second to reach for something - and landed right in the middle of the floor - fell so fast, and did major damage to teeth (and a 3 1/2 hour surgery to fix)...... I can actually tell when the dizziness or off-balance feeling is from autonomic or the PN in my legs - the autonomic affects my BP and heart - so feel like I'm going to pass out:confused: (blood pressure doesnt rise like it should) - while the PN just seems to all of a sudden cause me to loose my sense of where I am.... both are dangerous.... some days are better then othrs -if I'm tired and the PN is really acting up - its time to move very slow - and of course with the autonomic - everything starts to turn black so get on the floor fast as I can..... Have they looked at your cardiac condition at all? (autonomic symtom)

Understand your food intake
 

AND your med's effects as well. Some meds MUST be taken on a strict regimen in timing of day, with/without food, some not too close together as to cancel one or the others' effects. Not to mention the supplement issue which can influence a medications true efficiency or not. Don't forget as well, that LOTS of meds have 'dry-mouth' as a s/e...take more than one with that s/e...well, think on it..
Keep in mind that YOU have to be the one to really put any puzzle pieces together- Then when you think it mite be a 'something', don't tell a doc to do a test or the like, make it HIS idea by asking: 'Do you think 'this' mite have something to do in the picture?' Doc will either test or not.
As an example, last month my hypo-thyroid was changed to Hashi's, [another auto-I to add to the list-SIGH!] All along I'd been asking about the thyroid being a player in my Auto-I game, and well, all the #'s were disgustingly normal, but Synthroid would make the #'s normal no matter what else is going on...Docs in each specialty don't know HOW another set of issues in ANOTHER specialty can and do come into play...or wreak havoc.

As for dizziness and all, in my case I've realized that I get that way if I miss a key med at a key time...or forget to eat. Miss enuf meds, even a pill of this and one of that....my whole system goes into fall-down-and-go-boom mode Big Time! Catching up usually takes 2-3 days to get back into sync. In the meantime, just getting out of a chair, or down a step, or whatever really REALLY requires planning, and thinking. Just in case. It makes one soo disgustingly organized....until one forgets? Hope this helps a little! - j
I tend to 'forget' once too often at least once a year?

Hi, I'm Julie. I came across your thread and was hoping I could ask you a couple questions about your nerve testing and vasculitic neuropathy. I have lupus and many nerve problems from PN to now bodywide compression systems..carpal, tarpal, ulnar and radial, also multiple cranial neuropathies, tn, on and gn. Should I ask for a nerve biopsy and ANCA? Will a nerve biopsy always show the vasculitis if it is there? What findings did you have that made your neurologist sure you had vasculitis? Thanks, Julie