anyone else had this pattern of PN development?
 

I have only just got round to posting on BT2 as i had waited so long for BT1 to return and now recognise it would be worth asking the same question i asked on BT1 a short time ago.I am now 3 years down the line with 'probable small fibre pn' and its gone from my feet to my legs to my elbows,even my nipples and now it seems like its starting on my face.I must add at this stage it comes and goes in all of these places except my feet where it is pretty well constant.I am on lyrica during the day and a low dose of amitriptiline at night and so far i work a full day, take moderate excercise though i burn like mad for hours after,lots of B12 and other 'Wings' recommendations.Yes David i'm even taking Yoga which i wish i had started years ago.I also stay positive and follow your wonderfully interesting stories(Melody!) and advice as I feel you are about the only people i know who really understand this PN problem.My question is has anyone else experienced or heard of others whose PN has developed in a similar way as i fully understand we are all different but i sure as heck would like to have some idea about where its going to end.Thanks for listening

What tests have you had?
 

I suggest that you check out www.lizajane.org a site of worksheets compiled by NYCSilk in her own quest for diagnosis. Be sure to get copies of your tests and summaries of all MRI's and nerve conduction tests. It can help you keep track of the testing that should be done for a correct diagnosis. Second from last or near last should be an extensive blood panel and spinal fluid exam. Very last, and often not necessary by insurance companies would be nerve biopsies -from what I've read by them, they are going w/a sort of 9 out of 10 rule being enough for diagnosis and treatment.

IF your neuropathy is 'spreading' still, I urge you to get your records and seek out a second opinion, or even a third. That is what I did and my 'PN' diagnosis was changed to CIDP. As a result I receive IVIG [intravenous immunoglobulin] a blood product for an auto-immune neuropathy. These infusions have stopped the spread of the numbness, and while it doesn't eliminate all the PN symptoms, it certainly helps a LOT. It's expensive tho-I am very grateful for my insurance!

The fact that your problems come and go tho, that's one I'm not familiar with. Altho my overall symptoms have 'good' and 'bad' days. they don't change from 'spot' to 'spot' like yours.

Keep in mind that often it's your insurance company that limits the extent of the tests you go thru. It's up to you to assert the need to get the right diagnosis. OR it could be that your docs just don't deal with neuropathies all that much. Either way, you really should get some new views of your problems. I hope this helps! - j

DaveC--my neuropathy is similiar to yours. My face is involved sometimes, but its more rare than anywhere else. My cheeks will feel like they are on fire, I feel flushed and my cheeks will just burn, yet if I look in the mirror, I look perfectly normal--well, as normal as I can look:p ! The doctor told me I have periphreal neuropathy in my upper body and small fiber in my lower body. I also have celiacs disease and occasionally one of my intolerances flares up and I will want a heating pad on my tummy--many times I can't feel the heat of the pad, so I turn it up, only to realize, its working very well, I just can't feel it on my tummy surface. Somedays it's my hips hurting me, or I will have the feeling of a cramp in a butt cheek (:D not being to revealing, am I)--my point, my neuropathy travels all over the place and I never know where it will land on any given day. My feet always hurt, that never goes away and my hands will go numb at anytime they feel they are being given too much to do!

So, YES, some of us are similiar to you!

It is quite possible to have peripheral neuropathy beyond the extremities.
 

I am certainly living proof.

I have a predominantly samll-fiber syndrome that involves primarily burning nerve pain, and went from the bottom of my foot to my whole foot in four hours, to my hands in three days, to all over my body in ten--a very acute onset.

The all-over body presentation, especially if acute in onset, can really make neuros think you have a central nervous system condition such as mutliple sclerosis. It took me many months to get to a tertiary facility--the Cornell-Weill Center for Peripheral Neuroapthy--where the doctors were not only familiar with the possibility of body-wide neuropathy but could test very specifically for many types of syndromes. A skin biopsy showed I have extensive small-fiber damage (the fibers that subsume the sensations of pain and temperature, as opposed to the larger fibers that are measured by nerve conduction studies and control movement, vibration, and position sense).

I think the only part of my body that has NEVER experienced symptoms is a small patch around my Adam's apple.

When one has such a full body presentation, autoimmune processes should be suspected, including those from molecular mimicry (such as happens in Guillain Barre syndrome), from gluten sensitivity/celiac (that tends to be less acute, though), and those that are secondary to occult tumors (these usually can be tested for by lookign fo specific antibody markers, such as the anti-Hu).

thanks for the advice
 

When I say 'come and go' I probably mean 'good and bad' so apologies for that one!I've had most of the basic tests over the 3 years,lots of blood tests nerve conduction, ceiliac ,mri on total spine(nothing to report!)As i am in the UK and part of the national health programme I fortunately don't have to pay though private medical help is available(you see the same docs only quicker)i'm currently waiting to see a consultant at the Queens hospital in London(Feb07) recommended by one of the uk based users of BT,or she was before it crashed!Apparently itis the top centre for PN in the country(i hope).My concerns really centre around the lack of supervision of the meds i'm taking.As it stands i just go to my doc and say ''i've learnt about this drug can i have some!'' and he prescribes it.My fantastically supportive wife is a nurse and is disgusted with the way i've been left to sort things myself but thanks to you guys i'm learning fast.I do wonder though if the Lyrica could be causing side affects like the sore elbows ,nipples and face as i have not read of any really similar stories to mine on BT.I know i am lucky to be active and hold down a good job(Deputy Head)in a good school but this constant pain has dramatically changed my life over the 3 years. I'ts not going to win but I'd like to have as much ammunition as possible to fight back!(without getting stressed of course)best wishes David

Glenntaj,
I never read this before: When one has such a full body presentation, autoimmune processes should be suspected, including those from molecular mimicry (such as happens in Guillain Barre syndrome), from gluten sensitivity/celiac (that tends to be less acute, though),

I always believed my celiacs was the cause of my neuropathy. The doctor's say it is possible, but never really said for sure. Thank you.