Sounds like you're in considerable discomfort.

Why do they think it's autoimmune? Do you have a positive ANA or other markers? Have any of your blood tests been positive?

There is one thing I found helpful. I have a port and used to get IVIG. It is fairly common to use this for autoimmune neuropathy. I did this for 11 years. I won't say it worked wonders, but I certainly felt better then vs. now. I can longer take it after a severe case of aseptic meningitis (from a rare reaction to the IVIG).

You have a huge load of pain meds on board...many that can be causing the autonomic symptoms you're experiencing. I take numerous meds for my cardiac function (and have a pacemaker also). Midodrine and florinef are common to use for low BP. Beta blockers can help the tachy heart rates. I also take domperidone from Canada (not available in the US) for my gastroparesis.

I would ask your doctor whether you're a candidate for IVIG. It's not an instant cure...takes months of treatment to start seeing results. Also ask whether nerve blocks are an option. Being that I know my DRG is enlarged, I won't do any nerve blocks and risk more inflammation...but it may be worth asking your neuro or a pain mgmt doctor (like an anesthesiologist) in your case.

I would definitely stay away from immune suppressants unless you have identified the AI disease.

Certainly others will come along to give you some ideas on pain control as well.

This pain you have, Blaine, is far beyond a typical PN.

Yours is acute by far and most disabling. I met a woman once who was having a neuro inject her neck for some neck pain...an epidural of some type. He hit an arteriovenous malformation which he did not know was there, and she ended up in emergency surgery to save her spine. Her pain was treated with a similar dose of Percocet and some other drugs like yours. (she also used Lidoderms). Eventually she had to have a pain pump inserted.

I am wondering if you were evaluated for RSD? also called CRPS? Do you have color changes with your pain in the arms?
The sweating occurs in RSD too.


http://neurotalk.psychcentral.com/forum21.html

But it can also come from the Percocet. (and Cymbalta).
Cymbalta also can raise blood pressure. Ketamine and lidocaine IV infusions are sometimes used for RSD patients. If you read that forum and post there, some of those receiving these infusions may answer.

I hope you find some answers soon.

Both Dr. g and the rheum dr I saw said it was autoimmune based on blood tests and psysical findings (I have sores on my neck, hair line and jaw,night sweats, aches,tenderness and swelling in joints during flare-ups), I can also coordinate nearly every flare-up with a virus caught from the kids, or my allergy season severe times. But to be honest I was so relieved to actually have received a diagnosis by the time I saw the dr.s (only a yr ago for Dr. G and 1/2 ago for the Rheum dr), that i sort of relaxed my vigilance and let them take over. Now i am getting tired of it again. I just keep getting more and more meds added to my list.

Yes, I do remember something said about positive markers - but can't remember what. I will have to request a copy of all my records so I can keep up with this.

I also was positive for lyme disease read by my personal dr, and by and infectious disease dr., but then an University dr threw out that resuult, while a Jr member of the university staff hinted that the protocols of lyme disease is in serious need of updating and maybe I had had it or maybe not. I did get treated for it with a 30 day iv supply of antibiotics. I felt a bit better for a few weeks after, but then crashed again. Which goes along with this condition either way. Oh, though I do live in a tick area - I have never seen a tick on me - let alone had one inbedded in me. But who knows? Maybe I had it from when I was a kid and it just manifested now.

As for the meds causing the Autonomic symptoms, i'm leary on that because ALL of my symptoms have all been present since the very beginning of this. begore any medicines were prescribed. The only new symtoms that have show up in the past 2 years are the high blood pressure(last summer during server flare-ups) and high pulse rate that have recenlty (past 4 months) began to concern me.

I am interested in IVIG but do not know much about it. I do plan on asking my dr about when I see him. What are nerve blocks? I am not sure I know about this? Is it the same as the Neurostimulator?

I would really like to get rid of wll the pain/seditive medications - they make me tired, lethargic, depressed, andSTUPUUUUUUUPID!!!!! yes stupid especially the topamax. It really messes with my short term memory.

what was i gonna say

Well, again thank you for your help.

mrsD
I have had some interest in RSD. My primary care Physician was worried about it. But my Neurologist never followed up on it, perhaps now is the time to look into it more. Coincidently i have a friend with it, she has a neuro she sees for it and i have considered many times seeing him.

I don't think that I see different colors - except when I am at an extreme 9, 10 or even an 11 pain level. Then I am not very cognisant - I don't know what I am seeing.

thank you very much for your feedback - it is really making me feel better just having some one validate my pain.

Blaine,

Autoimmune conditions can come on suddenly from an infection, but are usually slow progressing. Ganglionitis is also slow progressing. I'm not sure what to make of your awful acute pain, but think you'd be wise to seek someone that can pin down a more defined cause (like which AI disease and confirmation of the ganglionitis, RSD, etc), so that treatment options are more clear. Have they MRI'd neck and complete spine? I'll assume they've done EMG's or nerve conduction studies...particularly of the ulnar nerve.

Nerve blocks basically injection medicine into the ganglion to numb the effected nerve. There is always risk and you must be weigh the risks carefully. I'm surprised you are being loaded up with pain meds...which don't seem to be helping much if you're still in extreme pain. There HAS to be other options and maybe you should seek another opinion at a good academic facility (you mentioned a university).

The IVIG is not going to solve acute pain...it's more for long term mgmt. of autoimmune neuropathy to slow progression. It 'modifies' the immune system.

You mentioned problems with your vision...what types of problems?

Gosh, I wish I had something more encouraging to say. Don't 'settle' for a life with this kind of pain. Keep searching for the doctor that will eventually pin-point this and provide you with better options.

In late Jan of '09 I got an upper respitory virus that lasted a couple of weeks. I also have asthma that comes on in the spring with my hay fever allergies or with a respitory virus. The virus in Jan was a severe one and i needed steriods and nebulizers treatments to get my breathing under control. In mid. Feb I got a GI bug. It went through the entire gi tract - stomach, intestines, and the end. I was feverish, achy, exhausted and weak.
I was also still debilitated from the respitory ailment. Also keep in mind the entire family went through all of these bugs. Thats how it goes around here, I was volunteering at my kids school; if they didn't bring it home, i would!

Normal years my allergies start to become a problem late feb/early march, so this year I was already ill when that time hit and di not think it was abnormal when I din't get better. However by April I still felt very ill. For the rest of that year my pcp was unable to determine what was wrong and my condition went up and down depending on virus that hit me or the one time I had the antibiotics when we thought it was Lyme.

By October of '09 my pain was so bad that my pcp then referred me to the university dr that eventually threw out the Lyme diagnosis, but referred me to their nuerology department. I couldn't get in to see them until the end Jan 2010.

This to me seems like a slow progression. But I really don't know.

I have had neck MRI's to see if it was a physical problem with the spine, but it came back clear. It was also taken early on. I just had one done last week and am waiting to get the results now. I am hoping to get maybe some new results maybe.

I have had EMG's and nerve conduction studies, at least 3 of each, but they all came back normal. Dr. G says this is normal for Ganglioneuritis - it will NOT show up on a EMG or nerve conduction study.

My vision flucutes in coordination with my pain. I have different ranges blurriness in each eye, also the eye will sometimes redialate under light.

I completly agree with you about the medication. It has been a slow build up process. The dr. trys somthing and it works just a little, for me that is better than what it is like with out it. I get a little worse, try a little more meds. Believe me when i say that i can not express enough how much i hate these medications. I will go to the universitys pain management center now, I really, really hope they will be able to put me on something to reduce the pain and reduce the other medications I am on.

Thank you again for your information and advice

Antibiotics in the fluoroquinilone family can cause nerve damage:
Cipro, Levaquin, Avelox.

http://neurotalk.psychcentral.com/post661103-2.html
There are links in this post, to the online discussions about this family of drugs and the damage they can cause.

Please take a look at this thread...
http://neurotalk.psychcentral.com/thread122889.html

Think back to what drugs you have had and list them here if you can. Don't assume because they are on the market they are free from potential to harm.

Here is just the Wiki on Levofloxacin (Levaquin)
http://en.wikipedia.org/wiki/Levofloxacin

Many patients have no clue how toxic these drugs can be for some patients.

Your GI problem may have been a consequence of the previous antibiotic use, causing a colitis. Or a food borne organism which can cause neuropathy itself. One example is Campylobacter found in undercooked chicken.
http://www.neurology.org/content/67/10/1837.abstract

However, neuropathy from bacterial infections is typically not localized like yours. But is possible. I believe one treatment is IVIG for this.

--is often part of the protocol for suspected autoimmune molecular mimicry reactions, as are, recently and more experimentally, a number of the immune-suppresant blood cancer drugs.

Autoimmune ganglioneuritis can occur both slowly and acutely, as can many other autoimmune reactions (think MS attack or Gullain Barre syndrome). There is an entity referred to as acute small-fiber sensory neuropathy, in which variants that attack both the nerve endings and the dorsal root ganglia have been described, and the suspicion is a molecular mimicry process:

http://jnnp.bmj.com/content/72/4/540.full

http://neuromuscular.wustl.edu/antib...uron.html#sfsn

In such cases, nerve conduction studies, which only are gross enough to measure problems with larger, meylinated nerves, are unlikely to show any deficit; it might take quantitative sensory testing or skin biopsy to show damage to the smaller fiber nerves.

I would agree with Glenntaj that a punch skin biopsy might shed light on a small fiber neuropathy. I wonder if your university has the capability to MRI with the DRG protocol to look at the dorsal root ganglion. I recently had this done at Johns Hopkins with the understanding that's a new technology, so i don't know whether it's available at your university...can't hurt to ask though. By the way, the skin biopsy can still be negative if the DRG is the confirmed problem...at least it was for me.

IVIG is now quite common to use for autoimmune neuropathy. But again, it's not a quick fix for acute pain by any means. However, immune suppression with your current and past record of multiple infections might be risky. I'd certainly get a more thorough work-up on your immune system and/or define the autoimmune process if possible before submitting to those big gun treatments.

I think your idea of the pain center is good. Maybe they can offer you something NOW while you continue to investigate the cause of this and long term treatment. It's going to be a slow process getting 'off' those other pain meds even once you find something that works. Hang in there.

Yes, in chronic pain management, immediate release format for drugs is not used except for breakthru pain. Severe pain, like yours, Blaine would really need extended action opiates, if opiates are decided upon, with things like Percocet to be used only for breakthru.

Long acting products are recommended and can lower pain levels more efficiently. If you have been on these high doses of Percocet for a while now, months, you might be a candidate for fentanyl patches. These can be very effective, more so than immediate frequent use of other opiates. Fentanyl is not for new patients who are opiate naive however. Fentanyl is used later in treatment protocols. Also long acting methadone works for some others but has to be evaluated carefully to make sure the patient does not have cardiac issues called "long QT syndrome".

Seeking pain management, is really important here, with your severe pain issues. That can be managed better, I think.