I am posting this hear on glenntaj recommendation. I hope I can gat some halp bacause I just can't go one much longer.

Please, please listen to my story... I have become what I once said I never would - a terrible, terrible, TERRIBLE mother and wife. I hurt my kids and husband daily. I am ruining my children’s lives and I often don't want to live and many days I beg to die. I wont kill myself as that would add to my families pain - but I don't think I would jump out of the way of a runaway car... Then I feel guilty about feeling this desperate because so many people are far worse off than I am. So why do I become so morose? Because there is no end in sight of our misery, the misery I cause to my family. I don't have cancer, I'm not an abuser(at least physically) or drug addict(at least not illegally!)and no one has died...
Two 1/2 years ago we were a happily forward moving family. We have four children ages 2,5,7, and 10; 2 biological, 2 adopted with special needs who were in therapy and with hopeful futures. My husband and I had had some rough times and were also in therapy to repair our relationship, but we were doing well. With the promise of a future partnership for my husband we had "gone-out-on-a-limb" financially by mortgaging another home for our aunt to live just down the street (which turned out to be a blessing and a curse). We had been invited to join a horse riding club we really enjoyed (I was honored to be asked to be president), as well as riding in other horse club events which were a large part of our family activities. I was very active as a stay at home mom and a volunteer at my children’s school. Being a part of their classroom activities and joining various committees rewarded me with relationships with my kids in way better than being a former business owner ever did. My husband was also chairman for a start up grass roots civic committee, things were relatively well for us.
Then February of 2009 I got two random virus back to back (kids bring home bugs all the time!), and my standard low-grade asthma/allergy time began. But this year I did not recover from the 2nd virus very well. It was the flu variety with fever, aches, pains, etc. It never went away, instead after about two months I noticed I was taking twenty Advil a day and my arms and hips were always aching. I was 95% disabled by the end June and tested and treated for numerous diseases and including arthritis, and Lyme disease. I now sit for 99% of my waking moments. I can not move my arms for any time period over a couple of minutes. It is a delay reaction and also a build up process through out the day. In the morning when wake pain will usually be 2-4 on a scale 1-10. With in 10 minutes of getting up, dressed, getting a cup coffee (decaf), using the facilities, and taking my morning medications I will usually be at a 4-6. At bedtime I usually at at 7- 9. To describe the pain is very hard to do. According to my Neurologist this is common complaint from patients with this disorder - it is not a common pain. At the least it is like a toothache, the worst is like a concrete slab is crushing my arms with ice picks sticking out of it, or as though someone ran a cable from my ring finger up through the middle of my arm to my shoulder blade and to my spine and is trying to pull my arm inside out! Can you remember when you have smashed you finger/toe with a hammer/on a door jamb, etc? That is me at a 6. This condition also affects my vision. There various degrees of blurriness that hit me, often correlating with my pain level. My dexterity and swallowing are also thought to be effected.
At this time I have a possible diagnosis and no cure in sight. I have a condition called Ganglioneuritis. It is an autoimmune response to a virus in which your body over reacts to your own auto immune system. In my case we can not find my trigger, and at this time are going to be trying some new things for the pain - but I not hopeful. It fairly unknown by most doctors. My life is in shambles, my kids are miserable; their personalities are changing, or in the case of my adopted children regressing or not developing in the way they need to be part of society. My marriage is crumbling and my self? My SELF is hopeless. We are behind in ALL of our payment with the threat of foreclosure and our homes. My husband did not make partner and now we are failing financially. We can not refinance because of the economic downturn. My home is in horrid condition. I cannot clean it and my husband is over worked. My aunt is able to help some but she I over worked as well. She is retired on disability with rheumatoid arthritis herself and isn’t supposed to do very much. My husbands true love is hot rods cars and he is having to consider selling his one that he wants fix up. I say no because it would only be bubble gum on the dam anyway. My kids deserve the best in life. I naturally think that they have a lot to offer to society, but because I am in sever pain all the time I can not facilitate their growth - only hinder it.. Treatment for what I have includes severe narcotic pain relievers, and Muscle relaxers ,and laying down AT ALL TIMES! The pain is so debilitating that at times I fall to the floor keening and crying in front of my children, something everyone knows you would never want to effect their fragile psyche.
I need a change and don’t know how to go about it. We have recently tried to implement a few changes in our lives to improve our relationships - but it is going to be a slow process, and frankly, quite a few things are beyond our means. We need to get on top of our finances, keep our home cleaner (this could actually greatly effect my health but is impossible for us maintain), keep me in a better mood, have time to bond. I need to find a person who KNOWS this condition and can help me get over it! IS there any one out there ?

Welcome to NeuroTalk.

I would suggest, that you try putting some ice packs on the spine at the level where you have these painful attacks and symptoms.
Ice can slow down inflammation, and autoimmune issues have an inflammatory component. Use ice packs for 20 minutes duration 3 times a day with a thin cloth between the skin and pack. Avoid HEAT, hot tubs or hot long showers, heating pads on your back where the ganglia are. Heat will activate pain and make it worse. Heat will fuel more inflammation.

Also antioxidants may help. Grapeseed extract in doses of 200mg a day, or curcumin enhanced absorption type, are both powerful antioxidants which calm inflammation.

Omega-3 fish oils, also help with nerve damage and repair.

As Glenn states, viral problems often calm down. But that takes time.

I should go more deeply into my symtoms. My spine is not painful really(I do put ice on my neck at the c6 level though to see if it helps - does not seem to but I admit I do not do this alot). The ulnar nerve is. My arms have the difficulties. I have all the typical pn symtoms; burning, pain, blah,etc. Ice on my arms makes them much worse, heat and muscle rubs help once I reach certain (between6-8) pain and inflamation levels. I do understand it is a dorsal root problem at the spine and one doctor recomended a neurostimulator, but I have had no sucess with working with his office and am now hoping to see an new pain specialist. I have tried alternative methods - but not this one, I will give it a try - thank you.

I reread your post, and noticed something.

Are your symptoms now confined only to the arms?

If so the fact you are always lifting children, and doing strenuous things for them with your arms, may also point to another condition called Thoracic Outlet Syndrome. This is where the brachial plexus of nerves becomes compressed/inflamed and refers down the arms. Ulnar pain is one sign. Also massed in the upper chest are blood vessels which can become compressed from repetitive motion.

Here is our TOS forum:
The stickied posts at the top have illustrations to show this more clearly.

http://neurotalk.psychcentral.com/forum24.html

I'd confine the cold treatment only to your spine, where the ganglia are located. It really serves no purpose lower down the arm. You will want to cool off the inflamed dorsal roots. The Herpes Zoster virus lives in those roots too, so if you have had chicken pox as a child, you may also have Zoster activating there. This can be tested for with a blood test. High H.Zoster titres (antibodies) suggest maybe a course or two of antiviral may help.

Thank you very, very, very much for your time and consideration in my health. My severe pain is strictly limited to my arms - specifically to my ulnar nerve. When it gets inflamed and as it worsens, the muscles in my arm respond similarily and the pain moves upwards. I have had to give up lift things by july of '09, when this became so disabling. I also cannot drive or do any cooking, cleaning, laundry or any other such normal function, as any movement of the shoulder or elbow joints inflames my condition, infact, typing is also quite painful, but I am desperate for help, so I will have terrible typing skills - so please humor me. I also have fluctuations in my vision going from farsightedness to normal to nearsighted - but different in each eye. I also have difficulty swallowing. My neurologist says that these symptoms are related to my condition. Thoracic oulet syndrome was looked into and ruled out, but I am not sure about the herpes zoster virus. I definetly had chicken pox as a child so I will be asking for that test or to see if it has been done already.

Blaine,

I'm curious about your condition and wonder if you'd share HOW you were diagnosed with this? What tests and what findings lead them to ganglioneuritis?

I ask because I have been diagnosed with ganglionitis secondary to Sjogren's syndrome (an autoimmune disease in which the exocrine system is affected). There seems to be a direct relation to Sjogren's and ganglionitis...but very little is written about it, since viewing the ganglion with any detail is very new, to my understanding.

My Sjogren's was diagnosed via lip biopsy & schirmer's test...and of course clinical symptoms.

I have suffered from severe autonomic neuropathy as well as PN (which is mostly pain in the back, neck, and feet). My doctor always thought there was some sort of ganglionopathy causing balance, autonomic, and pain issues but had a hard time finding the source. I recently had an MRI done to specifically look at the dorsal root ganglion (called DRG protocol). They found it to be enlarged bilaterally with increased signal...consistent with ganglionitis (which completely explains both autonomic and peripheral neuropathy)

I assume ganglioneuritis is the same (or similar) to ganglionitis (inflammation of the dorsal root ganglion (DRG). I have tried multiple meds for the pain without any luck. I am currently trying R-lipoic acid after reading MrsD posts. I'm just under one week into it (now at 100mg daily). No relief just yet, but I'm still hopeful.

The most useful suggestion I can think of, is treatment of the underlining autoimmune disorder (if that's what he thinks is causing it). Many AI diseases are initiated by infection (viral or bacterial), stress, trauma, etc. I would think you should be evaluated by a rheumatologist for AI disease. By the way, unless you have had a tick bite with a bulls-eye rash your lyme titer could have been affected by an autoimmune process. It is common for those with AI disease to test positive for Lyme (according to my neuro)....and not actually have it.

I wish I had more to offer you. However, there is more effective AI treatments these days that may be helpful to you if they identify the underlining problem. I would also read mrsD's posts on R-lipoic acid. It certainly can't hurt to try.

My Neuro diagnosed me based on his findings mostly from a physical exam and history I think. I need to get a copy of all my records I think. My symptoms are EXACTLY like Sjogrens ganlioneuritis/ganglionitis and Chagas, and I too have been through too many medications to count and at this time amd on about 9.

My Neuro talks alot comparing me to Sjogrens patients. I do not have Sjogrens and the thought is that mine must be an inherited disorder. Dr. G (Neuro) did a series of physical tests that included pressing my cuticles on my fingers - I had little sensation, a scratch test that showed only some red on the skin of my arm, an eye test that showed one of my eyes redialating in the pin light and more that I can not remember.

He determined that I developed this ganglioneuritis from the intial virus 2 yrs ago, now it has turned into an autonomic neuropathy. As you said it is hard to find information on this condition, as is viewing the dorsal root ganglion.

I have just a week ago had another MRI to update my status, I hope to find some new information from this and maybe some new therapies. Dr. G said that there is no real treatment for ganglionueritis, just to treat the symtoms, there medications I am on allmost cause more harm than good. Okay my arms are giving out on me for the day, I love that I am actually getting a response from someone - thank you, please continue to talk with me. I am better in the AM, I live on the west coast USA! talk in moning

I did try R-lipoic acid for 30 days and did not find a difference. I do not remember the dosage though, I will have to look it up.

It is possible (many are ) to be sero-negative for Sjogren's ...I am. That's why I had the lip biopsy to confirm. What symptoms do you have that are Sjogren's? Have you ever had a schirmer's test and/or lip biopsy to confirm or deny the SjS?

The autonomic neuropathy comes from the ganglionitis as well. I have every aspect of it from severe gastroparesis, balance, temp control, difficulty urinating and many cardiac manifestations. Autonomic also includes (little talked about) vascular spasms...whether they be cardiac/coronary or the medium sized vessels in your skin causing livedo reticularis (which I have head to toe).

I was going to tell you that no "effective" treatment for ganglionitis has been found yet...but was afraid of upsetting you. There are, however, fairly good treatments for (some of) the autonomic dysfunctions. What types of autonomic problems do you have?

Pain is the hardest to cope with...by far. I don't have any suggestions for that as I continue to struggle myself. I try to distract myself as best possible, which is effective for short time periods. I'm still hoping the R lipoic acid holds some promise.

I know it may sound cheesy, but attitude is your best asset...keep it positive and always remember what you still have, not what you've lost.

many dietary supplements take longer than one month to see optimal effect.
also, research celiac disease

I don't have Sjogrens symptoms, but have the same type of Sjogrens nueropathys. Also Dr. G says this condition is like Chagas.

My Autonomic - My dexterity is very off, I have a hard time placing my hands and fingers in the rights places. My vision is also part of the autonomic system. My heart rate has recently become elavated and that is now a concern, blood pressure bacame a poroblem about 9 months ago, difficulty breathing has also come up, and I have allways had the best heart condition !!!. The difficulty swallowing - somtimes I just have to lift my chin up to let the food fall down my throat. I have very weak, thin nails. I also sweat alot when in moderate to severe flare-ups.

It is not just the pain that debilitates me but my medications, if I did not have these I would be hospitalized. THat is not an exageration, even with all these meds, i often still hit an 11 or 12 in a of 1to10. I was a person who did not take any medications at all at one time, now this is my life:

For pain and muscle spasm:
Percocet 10/325 every 4-6 hrs (4-8 daily depending on pain/activity levels)
Skelaxin 800mg every 4-6 hrs during day

To run pain interferance to the brain:
Cymbalta 60mg am
Elavil 50mg pm
Topamax 50 mg am and then 50 more mg pm

Otc acid reducer 150 mg ranitidine
Benazepril 10 mg use as needed when pain increases blood pressure

Flexeril 10mg at night or if a really bad day time in lieu of skelaxin
Lunesta 3mg nightly to sleep through pain
Vitamin D 1000mg 2/day

I now have to face adding more meds as my dr wants to install a port for iv ketamine and lidocane to see if they will help - anyfeedback on that?

I did see a rheumatologist a yr ago and he was not ready at that time to put me on autoimmune suppresants - but I am thinking that I really need to push in that direction. My quality of life is terrible. I really love your idea that we need a positive attitude, I really used to live by that. But my family has lost sooooooo much, I don't know if there is anything left in me to be positve.

What do you do for pain? What meds are there for the Autonoic system?
again, I really appriciate everyones feed back.

pabb- what is a good legth of time to try a supplement for? Also what about brands? That always concerns me, I dont know which ones are the quality ones.