Blaine,

Most of us have seen our fair share of awful doctors.

Here's a link to wikipedia's page on small fiber neuropathy. It has some fairly good explanations.

http://en.wikipedia.org/wiki/Small_f...ral_neuropathy

The skin biopsy is done on the surface of the skin. Mine were done on the outside of my thigh (upper and also near the knee) and next to the ankle, since my pain and sensory problems are mostly on the legs and feet. They check for the density of the very small nerve fibers. This can tell them if there is nerve damage and the cause of your pain.

The MRI that I mentioned which can see the dorsal root ganglion is in the lower back (lumbar area). This is a simple MRI scan...no biopsy. However, this particular type of MRI is very new and probably only found in academic/research facilities like Johns Hopkins, Mayo Clinic, Cleveland Clinic, etc.

As for doctors knowing about ganglioneuritis: That's a good question and you'll get plenty of "looks", because there is very little known about this. My neurologist at Hopkins is an academic doctor (strictly research) and sees very (and I mean very) few patients. He is both a rheumatologist and neurologist (the only one in the entire country to be both specialties) and his research is ONLY about the neurological manifestations of rheumatic diseases (autoimmune disease)...in particular, Sjogrens (which I have). I tell you this (and my point) is that even though this is his specialty and his sole research (at a top facility), he still told me he knows very little about ganglionitis/neuritis himself. So finding a neurologist that can give you the answers you want will be difficult. There just isn't much knowledge of this out there yet.

I would ask about the skin biopsy to confirm or rule out the small fiber neuropathy and go from there. Seek out a pain clinic to alleviate some of your discomfort.

Don't let the insurance change get you down. Instead use it to your advantage to possibly get more defined answers and help by having a fresh set of eyes taking a look at your condition.

Hi Blaine,

Just to clarify....the diet was more important to getting things back on track than just adding in probiotics. The probiotics are needed to re-establish a good gut environment during a detox and on-going support. Prior to doing the diet, I too was taking probiotics but they were not effective as a "stand-alone" therapy.

Marlene

Thanks Marlene,

I used to have a fairly well balenced dirt (this is what my fingers typed I thought I would leave it there for a laught - we do live in the country)(DIET). BEFORE I met my husband.....I struggle constantly with my Irish/german husband who grew up with meat and potatoes and desert meals. I have finally got him trained to have a salad and sometimes a vegi with every meal and no deserts. I myself used to eat very simple whole grains, usually bean protein, maybe chicken or fish, and vegis. Now hubbys german aunt is the one who cooks all the meals for us. But you know lately (past 6 mo) I have completely changed. i have become a comfort eater. It is terrible I know. I have been trying to cut back because I do not want this to be a serious habit.

I am/was very sensative to my body and can feel how "toxic" these so called comfort foods are(sloppy joes w/ cheese, cheese quasadillas, ice cream - ans I used have a TOTAL sugar INTOLERANCE!). They are NOT what my body wants. They are what I what I emotionally want. I learned t0 listen to my body at a very young age as I grew up one of those kids with an undiagnosed very high metabolism/hypoglycymia. I was 21 when a doctor in an emergency room finally told me that I just had to eat high protien meals every two hours and I would quit passing out, getting dizzy, feeling nausious, getting migraines, etc. It was amazing! I had been that way for about 7 years and my mother had been a nurse! So listenening to my body and how it likes and does not like what I eat is what i USED to do.

So I REALLY appreciate you bringing up this point, I have to get back on a proper diet and start listening to my body again...thanks!

.......I think I may have been ignoring it because of all this crud going on.....

I know what you mean....it's so easy to slip back into old habits. Sounds like sugar is a real problem for you. I got very focused on the symptoms/disease, meaning that I was trying to fix very targeted problems for my husband. The more I researched, I realized that I needed to view things at a more holistic level. And that was to do everything we could that support good health. That meant eating whole foods (eliminate/reduce sugars and white grains), we upped our protein intake which meant a good protein with each meal (anti-biotic and hormone free; and grass fed when possible); (Two of my references for eating were the Westin Price Foundation and Metabolic Typing diet) Looked at all the toxic chemicals we were being exposed to and eliminate where possible; find a way to get some exercise; find a way to incorporate some type of stress reduction/meditation; Get some good sleep; Addressed hormone imbalances; And finally, have some bodywork to help nurture yourself.

Sounds like you've had imbalances prior to your 2009 virus, so try to explore what you think you needed back then to tonify your system.

We've done many things and all have had some level of benefit. I do understand that when you are in pain, it's difficult to see the progress and it's easy to fall back on old habits. Sometimes you're just tired of being so good. Been there .

Blaine,

I read your med list and almost fell over! That is a lot of meds.

I have problems similar to yours, in that my upper body is affected the worst. I can bring on some awful symptoms if I over use my upper body. It feels like some creature has taken up residence in an egg sized area in my T spine. This all causes me lots of grief. My house is a mess too....I am older than you....I also raised special needs kids that we adopted....(extremely stressful beyond words). The more stress you have the worse this all gets.

I am on IVIG for now....until our Governer and his crones, here make insurance unaffordable for the hard working public employees....anyway....see if you can try that and see ONE doc regarding all those meds....you are at high risk for drug side effects and interactions.

FROM en bloc:
Here's a link to wikipedia's page on small fiber neuropathy. It has some fairly good explanations.

http://en.wikipedia.org/wiki/Small_f...ral_neuropathy

thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you en bloc for poiting out this website. I have seen some others that were great in scientific detail, but this put it in simple laymens/patient terms. It was eerie how exact some of the symptoms were - like the ice pick ot thebones - THAT IS THE CONDITION OF MY ARMS 90% OF THE TIME.


I wish one of my doctors would have done some of the tests for SFN 2yrs ago - why i the world wouldn't I have actuallly used the exact terms to describe my that arm used decribe SFN - is it an uncommon disorder?


Hi cyclops - thanks for your hello, I love your response. Youdo understand about the whole kids/house things pretty well then, having been through it. every day I analyze what I am putting my kids through andwether they would be better off if i left. I am in pain and cranky all the time, iam down right nasty at times, i can't play with them. what good am i doing forthem. god its hard.


We have called around to three kaiserss and so far the heads of neurology of those three have never heard of ganglioneuritis. I am so stressed about the insurance rates going up and coverage going down if we feep what we have - but if we change to kaiser it looks like we won't be able ot work with anyone who knows ganglionueritis.

I HAVE HAVE HAVE to get off some of these meds and on to better less damaging ones!!! But is igo to kaiser I have to go through their long process of referral, if I stay with our I join the pain managment at the university next month.

oh my goodness - its rediculous that we have these problems in the first place ,then you throw in life - let me crawl into a cave

Blaine,

Try to get into your current neuro and talk about the skin biopsy before you have to make the insurance change (certainly you have 30 days or more before you choose/change). Maybe even ask about giving the IVIG a try. This way, if you go to Kaiser, maybe they will just follow the plan already established. Kaiser neuros WILL know what SFN is and IVIG is an appropriate long term treatment in many cases.

There is one other thing you may want to ask about. High dose IV steroids. Knowing the condition is an -itis (meaning inflammation), then IV methylprednisolone might be helpful. It is done for 3-5 days in a row once a month. I have used this and it has been helpful for some symptoms...some of the time. It's not a cure all either, but can be helpful in some cases/circumstances. It is something that you will notice soon after if it will help or not. Again, can't hurt to talk to your doctor about options.

thanks en bloc I will take your advice and make calls on monday

I have a new question:
Often when my pain is more intense my sense of smell becomes VERY sensative. Often to the point of severity that I have to keep my nose covered. Has anyone else encountered this? It only happens when my pain reaches 7+. Is this part of PN? Should I post this question elswhere?

I have to talk about a small sucess I had - yesterday I played with me kids. I said "to *%&% with it" and got in and wrestled with them - they were all gentle with me, and had a pillow fight and I tickled my twelve year old til he begged me to stop. it was great. And I did not hit an 11 or 12 out 10 on the pain scale which is what normally happens if I move alot. I got to about a 9 and stayed there for the rest of the evening which is totally amazing! I did wake up at a 7 though. Normally I wake up at a 2-4. It is real hard to move my arms and fingers this morning but I had to shre how good I felt to play wit hmy kids.

Sorry if I ramble alot in this thread - but I kinda need an outlet, peole don't listen to me very well. I notice in all of my relationsihps I am th elistener and whe i try to talk to them the ydont listen back very well. gotta go getttng worse

Hi Blaine. I made an account with this site just to talk to you, after seeing your post. I see that you mentioned testing positive for Lyme disease. *edit* remember the tick bite AND have a bull's eye rash to really be positive. That's completely, totally false,*edit*. We have moved way past that in today's age. And that you said you had a month of IV antibiotics and felt better afterward...

First, it's the other way around, as far as something else they told you: Autoimmune tests don't cause false-positive Lyme tests. They don't GIVE YOU antibodies to a syphillis-related infection unless you actually HAVE one. But Lyme disease can and does cause a false positive autoimmune test, all the time. Nearly every "Lymie" out there has tested positive for RA, or Lupus, or any other random autoimmune illness; they improve on antibiotics becuase it's not an autoimmune condition, or even if it is, it is one being perpetuated by infection. (It's actually more common for people to first feel worse after antibiotics, and then improve gradually--all the toxicity caused by the dying bugs can cause a Herxheimer reaction. It's like when you feel worse at first when you take antibiotics for a sinus infection, except it's.. everywhere.)

This disease is so controversial I can't even begin to cover it. I'm sure a hundred people will see this and try to explain away everything or say that I'm making it up, or, any other number of things that we usually only have to put up with from ignorant doctors.

What I have to tell you, is to please educate yourself about Lyme disease. It does NOT go away with just one month of antibiotics. You can watch the film "Under Our Skin" for FREE on *edit* now, it's really an eye-opener as to the massive epidemic there is in this country--that you even tested positive at all is somewhat of a miracle, because some of us have BLATANT infectiona nd yet can't test positive; it only shows up in our autopsies.

I'm talking to you because if you do choose to see a Lyme literate physican, there may be help for you, and an udnerstanding about all the (not so) random things you've had to go thruogh, and are still going through. Neuropathy, joint hypermobility, breathing problems, I know all fo these things. It's a random stranger's information on the internet that helped me figure out I had it, and I just had NO idea what I was in for--I thought Lyme was one fo those things people talked about a "magic solution" to their problems, to keep them from facing the real truths. Not at all. It's not anyone's fault for not knowing, becuase the information just isn't puto ut there enough: But I'm trying to put it out there for you. One of the unfortunate "stars" of the Under our Skin film is from California. Please, please educate yourself on what Lyme disease REALLY is, what it REALLY does, and hwo you REALLY treat it.

It's not just a bacterial infection--it's a neurological disease by the time people start showing late-stage symptoms. It doesn't just infect you and give yuo rashes and joint pain--it can mimick just about any condition because it's systemic and infects wherever it can hide from the antibiotics. You don't treat it with a month or even two, of antibiotics--some people have to treat for months, even years to fully eradicate it from their bodies, espeically their brains and nervous system. If you wish to e-mail me, just add *edit*.

*edit* can help you, and *edit* can help you find a doctor near you if you choose to pursue this. There's NO reason for someone with a positive Lyme test, who has severe symptoms (I also have nerve damage, in so many palces), who had improvement on antibiotics, to not go see a doctor who REALLY knows what Lyme disease can do, and who can also offer you REAL help instead of just guessing. Not to mention the ticks these days carry so many other infections, including viruses, which is a major reaoson why it's so hard to fight off these days--too much at once, and the immune system is too overwhelmed. Throw in the fact that doctors are etiher too scared to treat or think Chronic Lyme just doesn't exist, and the patients end up suffering years before getting an accurate diagnosis, usually having to save their own lives because there is no one with a degree to help validate their suspicions.

God bless you, I'll be thinking of you, and hoping, praying, you find real help. I'm so sorry you've had to suffer for so long.