Dear Blain, I have been reading all the posts. I have a condition, not yours, but it did affect me in every way as it has with you and your family. When you are sick and have multipal other issues, it makes dealing with the pain harder to cope with. Coping skills can crash. Can you get any kind of council?
Maybe in some ways, you will be able to teach something to your family. Maybe they can learn to be more compassionate toward you. I feel like you are the one absorbing all the responsibility of your household. Are there any other family members who could help you? Can you quick sale any home? Is there any council just for financial? With some of the burning issues at home, some relief needs to be found. I wish I were your neighbor and could do something for you. You all sound very stressed and that can and does make the pain issues worse. I am so glad you found this site. If there is any way to relieve even the tiniest bit of stress, do seek it. My family didn't do so well with my condition and I am in a situation also that brings overwhelming stress. I have two friends near to me, and this site and their council which has helped me. I wish there were more gentle words to bring a little comfort and hope. I hope you have less pain today. ginnie

I can't thank all of you enough for you help and feedback. I am really glad I found this site and am finally Utilizing it (found it 18 months ago when 1st started have pn - but never considered I REALLY was a canidate).

mrsD -
I have looked at the web pages and they are amazinG! fortunalty i NEVER take antibiotics. EXcept when I was a kid for earinfections i took them all the time. Then one tme when I developed adult asthma from "walking" pneumonia, and the one time for a month when they thought I had Lyme. I don't ever use antibiotics with my kids or animals either except as a last resort. I felt I was give antibiotics alot as kid and just dont want to use them now - i like myy body to work on its own. Funny how a person that believes in that philosophy has an autoimmune disorder

sorry for my typing skills today my hands are really not listtening.

I am also not on and cholestorol drugs, BUT I AM on amitriptiline (elavil) - for pain interuption therapy. one of the web sites says this can cause PN!!!! I will talk to my neuso about this, but I will admit that elavil did reduce the severoty of my flare-ups. (or is it flair-ups?)

Both of my conditions in early 2009 were thought to be viral and I was not treated with antibiotics for them.



glenntaj
I am very interested in IVIG, enbloc, and mrsD ahve both mentioned it, and I will bring it up to my neuro and the pain clinic, but I don't know the EXACT cause of my condition - so how can that be treated with IVIG.

thank as well for your refernces, theyare very helpful.

thanks en bloc - I like your support very much, tell me how does a biopsy work for DRG?

ginnie - thank you so much for your emotional support. there is no way to sell either home as they both overmortgaged beyond belief. Our little town has benn hit very hard by the reccession and we have lost 80% of home value at least. As far as family support, personally I have no biological family that I am in contact - they wree never a real close group. I have what is called a rent-a-family who have loved sinve i was 13 years old. We se each alot and talk, been when I get really down and depressed and frustred and angry - I CAN"T talk about - I don't want to be a whiner, or burden them with my problems. It seems weird - but to so many perople I seem normal, they cant SEE my pain. If they don't see and injury, or chemo signs, o surgery, they don't see nad illness. I hear from poepls all the time "how good you look!!". okay - i look good, i can kind of walk, but i am gonna jump off this cliff over here oak y! They just dont get that I walk about will the pain of have smashed arms 24 hrs a day. I wish you were nearby, but I like talking on line to - i feel a little more freedom that way i think!


I have to take a little aside here - YOU ARE ALL SO KNOWLEDABLE!!!!!! I feel like I need to go back to school. You have all thses big words -"long QT syndrome" "extended action opiates""quantitative sensory testing or skin biopsy to show damage to the smaller fiber nerves." "punch skin biopsy""capability to MRI with the DRG protocol""define the autoimmune process if possible before submitting"

I have a question - I did see a rhuematologist and he said "Your immune system is trigger happy, but i am not ready to put you on immunosuppresants yet". what does this mean? I have no life with out being medicate into a blob! I like and respect this Dr. - but what quality of life do I have now? - what is he waiting for?

The biopsy I was referring to is the punch skin biopsy to rule out or confirm small fiber neuropathy (same one Glenntaj mentioned). It is a relatively easy procedure where very small (punch) segments of skin (smaller than a pencil eraser) are taken to assess the small nerve fibers under a microscope.

The DRG (dorsal root ganglion) protocol is a new MRI protocol to better view the ganglion itself which should help to confirm or rule out ganglionitis/ganglioneuritis. I don't know how widely used this is yet around the nation. Johns Hopkins (where i had it done) said it was a new technique for them, so may not be available everywhere...but it can't hurt to ask.

I understand how all this can be overwhelming. Take little pieces at a time and ask as many questions as you need. We are here to share what we've already gone through in hopes to make your journey a little easier.

As for the rheumy: I don't know why he's not treating the autoimmune process now...first of many questions he needs to answer for you. Maybe he doesn't know exactly what the autoimmune process is yet. When do you see him next? You always have the option of another opinion or ask your neuro to talk with the rheumy directly about your condition.

You've taken in a lot of information in just a few days. Let it sink in and absorb. Make a list of questions as you think of them for both your doctors and us here. It can take a bit to get heading in the right direction, but it sounds like you're ready and needing to have a better quality of life.

There are supplement ways to help reduce inflammation.

Grapeseed extract, 200mg a day may help. Some use the more expensive OPCs.

Vit C 500mg a day, and a natural Vit E (with the various subtypes listed on the label) 800 IU are both antioxidants, and may quench some inflammation.

3 fish oil caps, or 2 Krill oil, may also help.

These interventions are subtle and would take at least a week or two to show some effects. They are not like drugs.

--are still very new and experimental; they were not available even when I first began my neuropathic journey almost eight years ago.

They build on the magnetic resonance neurography techniques that have been used, also somewhat experimentally, over the last decade or so, to image nerve tissue by selective water excitation. The following paper is representative:

http://www.ajnr.org/cgi/content/full/27/10/2098

I don't know of any insurance companies who are paying for this yet, however.

One thing that's been mentioned in this thread that's got me thinking--the possibility of Lyme disease. The testing for Lyme is very controversial, as many of us here know--many believe the "standard" ELISA/Western Blot techniques miss too many, as the interpretation protocols are very restrictive--in the opinion of a good number of patients/physicians, too restrictive--and a lot of those with that opinion swear by the Igenex labs, which also does testing for other tick-borne diseases. Lyme, of course, can mimic a lot of other problems, can certainly attack nerve and ganglia, and has been implicated in autoimmune molecular mimicry.

It might not be a bad idea to take a look at the Columbia Lyme and Tick-Borne Diseases Reseach Center Site:

http://www.columbia-lyme.org/

Have to see if I can get Liza Jane, with her expertise, to take a look at this thread as well.

is digestive health. Years ago, I had a similar situation where the flu caused an auto-immune problem for me. No where near as bad as what you are experiencing. The docs could not identify what it was, just that it was happening. After lots of blood test with no clear picture, I ended up addressing food sensitivities, went on a candida detox diet for six weeks and supported my gut with probiotics. I worked with a chiropractor during this time. After about two weeks, the joint pain was gone.

For most people, there's a been a long-standing imbalance and the virus is what pushed you over the edge. Even though you are not taking antibiotics now, the ones you took in 2009 are enough to cause ongoing digestive issues which impact your immune system.

[QUOTE=glenntaj;755867]--are still very new and experimental; they were not available even when I first began my neuropathic journey almost eight years ago.

They build on the magnetic resonance neurography techniques that have been used, also somewhat experimentally, over the last decade or so, to image nerve tissue by selective water excitation. The following paper is representative:

http://www.ajnr.org/cgi/content/full/27/10/2098

I don't know of any insurance companies who are paying for this yet, however.




Glenntaj,

Yes, the MRI with DRG protocol is quite new and likely not available in many locations yet. Not only did Hopkins have this new technology, but they also did this MRI even though I have a pacemaker. I was privileged to be part of two very new programs...the DRG imaging and also a pilot program (one of the first few hundred patients) to perform an MRI on patients with pacemakers. They actually controlled my pacing from the next room and adjusted for changes the magnet caused on the device. I only noticed one incident toward the end when the magnet increased my heart rate (through the device & well beyond the normal settings)...and within seconds the technician reversed the change and brought my rate back to normal.

And the best part: My insurance (primary, Medicare & secondary, Tricare) paid for everything...not one penny out of pocket.

Great article, thanks for the link.

[QUOTE=en bloc;755918]Very interesting! Thanks for this info!

Wow! You all ahve given me some INCREDIBLE information, and I am learning alot. But now I am on the verge a breakdown again. Last night my husnband came home and announced that our insurnace rates were going to go up again, and our coverage was going down. We havethe choice of staying with our insurance (which we cannot afford the rate increase) or switching to Kaiser. I have nothing against Kaiser - it's my terror of starting the whole process over again and finding someone who knows about his condtion. I just am just nausious and starting all over. I went through over 15 doctors to find one who even could identify what I have! How can I get tratment with a whole new medical group?

guys.......for real

I just can't do this

Sorry, about that.

Plaese understand I saw some pretty awful doctors before I got diagnosed. In fact, one doctor at one the most renowned unversitys in the Western United States tells me "you should see about getting elbow pads" this was after I had the condition for nearly a year and lived and layed on a couch where my elbows never touched a surface. I came away from that appointment ready to cash in my cards, but thankfully met with my neuro a couple of months late and we started on this road at least of some meds that hide the pain alot. Even now - no Dr. I meet has ever heard of ganglioneuritis - I hate the sceptical looks from everyone.

I am very interested in the bopsy - is it of the surface skin near the DRG or what? What exactly does small fiber neuropathy mean?

As for the Lyme test; we knew it was highly controversil when we requested I be tested for it. We had to rewuest it becase i had been tested and seen for numerous things and my pcp had not found any thing yet. We had done reseach and Lyme came up often in our results. When we asked for the test, we requested the 2nd, more thorough test to done 1st, just to get it done right away. Like I said, my pcp and an infectios disaese dr from the local hospital agreed with the results - but the university threw it out.

For the 1st year of this condition I tried many of the alternative therapys for neuropathy - but did not find a lot of relief. I did alot of probiotics as well. Especially after the antibiotics or after steriods like prednisone. I also tried accupunture and it did help! but the results did not last more that the day. I have not tried altnative therapy for inflamation and am VERY intersted in trying this. Too bad insurance didn't cover these therapies.

Does anyone know of neurologists know anything about ganglioneuritis on the west coasts that are with kaiser?