[chaos]

Obviously I need to see the doc again, sooner than he said to go. I have some new symptoms, and because the doc just seems to want to put me on meds and send me out of there, I need to get some ammo to go in there with. I seriously don't know if this is a good or bad doc, but I don't have many choices in my town, so I'm going to try to keep on that "I'm my own doctor" bandwagon.

So here are some things I know:
Neuropathy started in June/July 2012. I assumed it was caused by a burn or 3-day epidural as it was only affecting my feet. I had sub-clinical hypothyroidism (and tested negative for Hashis), and borderline B12 (it was in that good range, but I know that range is outdated). While both of these can be causes, they're both borderline and I was told by the doc that they are not the reason. I believe the thyroid became worse due to my injury, it was probably on the edge beforehand, and got worse because of the trauma. I've been taking Levothyroxine (need to go get another blood test, but last was good). Gabapentin made me stupid and doc changed me to Oxcarbazapine about 6 weeks ago. It's making my memory horrible. Not sure if my meds aren't working or if my symptoms are getting worse.

I am now considering that it's possibly genetic, as my dad is adopted. He himself has seizures. He's been on Dialantin forever, so for all I know he's been medicating something this whole time and never felt it??? He found out his dad had both Hodgkins and Pituitary Cancer. His bio-half-brother had another kind of cancer, testicular I think. I am not diabetic, I've been tested many times, did my own tests at home, great blood work there.

My stomach has been having issues since Oct. It's the upper track part, doc is trying Zoloft to see if that helps, which I think it has a bit. I don't know what's causing it. Meds, infection, a side symptom of something else? I've thought about Celiac, but my stools don't fit the symptom checker, so I'm hoping that I can rule that out.

My pain has increased. My toes are constantly cold, the shooting and buzzing in my feet have increased. But for at least a week and a half my wrists and tops of my hands have hurt, it seems like it's in the joints and muscles. It's definitely not carpal, and it's both wrists evenly. I haven't done anything to them, because I don't do anything at all anymore. My grip has weakened, especially in my dominant hand. Picking up a glass hurts, opening med bottles hurt. The pain happens more when I move it around, but sometimes its just there, shooting pain into various parts of my wrist. It's not my back being out either. I know what that feels like, it's not the same. Tingling in my hands is minimal. Typing, surprisingly, isn't a huge problem because I have my desk set up well.

Now my hip joints are hurting too. This is a sensitive part of my body, that and my SI joint from a childbirth injury. Again, both sides are sore. Then the other day my lower back locked up and it's sore from mid-back down to my butt. I'm guessing some PMS is contributing to this pain.

When I was in the hospital last Dec (the burn/injury) they gave me a ton of drugs. From what I've read, I didn't take them long enough, but there was a massive amount of them. If there was toxic neuropathy, it came from that time period. I'm very sensitive to drugs, got addicted to Percocet in 10 days and had to wean off it over 6 weeks. Flagyl (a PN trigger) had a bad reaction with me, made me too nauseous to take anything else and kept me in the hospital longer.

For many years I've had sore spots, on the tops of the hips (like where you'd put your hand if you were resting it on your hip), around the ankles and on the sides of the upper arms. I've always been a sleeper, could sleep 10 hours every night if I didn't have a job or a kid to take care of. I had Mono 20 years ago. I have thought about Lupus or other auto-immune disorders, but I just seem to have those symptoms that fit just about anything if you try to match it up.

Doc only did some prick test on me months ago, didn't run any other tests than blood. I obviously need him to do some tests. I need to go in and tell him to do x, y, and z, but I'm not sure what to tell him. At this point he's treating me like I have diabetic neuropathy. I really want to find out WHY this is happening (don't we all!) and how the best way is to treat it.

[Susanne C.]

I do not know if this is a possibility or you or not, but many of your symptoms sound similar to mine, and I have hereditary neuropathy. Your dad being adopted sent off bells- I am illegitimate, but I know my birth father self medicated with alcohol all his life and my half sister wore leg braces.
My symptoms were limited to clumsiness and walking funny as a kid, but numbness started in my 30's, escalated in my 40's, and went though the roof when I was put on Tricor for off the chart triglycerides. Neurologist stopped that and symptoms retrenched but I walk with a cane, have visible muscle wastage, and take gabapentin and opiates for pain. Life is pretty difficult some days.
The hand weakness comes and goes, based on when the pinched elbow nerves act up . EMG/NCS showed pinched nerves as well as large fiber neuropathy. Skin biopsy showed SFN.
If it is hereditary there is nothing that you can really do, but it would be worth knowing.

[glenntaj]

--there are a lot of serological tests that should be done, if only to rule out a batch of potential causes.

This clinical application paper by Dr. Latov and ques Diagnostics is pretty comprehensive:

http://www.questdiagnostics.com/test...ripheralNeurop

A lot of us also use the Liza Jane spreadsheets, which weer designed to be about as comprehensive a listing of tests for neurological symptoms that a lot of minds could come up with:

www.lizajane.org

A word about your celiac comments--almost anyone with neurologic symptoms of unknown cause should get a celiac panel. I don't know what you meant by your 'poop' profile, but celiac does not always present with eliminative disturbances.

[chaos]

Thanks Glenn. Do I have to drain like half by blood to do all these tests?

Will I have problems getting the doc to request all these tests? I have to go in and get my thryroid tested again (I'm overdue) and was going to throw at least the B12 on while I'm doing that. My Endo isn't going to want the results from the other stuff, but I would like to recheck the B12 sooner than later.

What's the skin punch biopsy like? I've seen it talked about a lot here, and the Neuro said he assumed my EMG would come back normal, and no, he hasn't ran any tests except a basic blood panel. Can you ask it to be done on one leg and not the other and do they have to be on the same side? I have a big tattoo on the side of my right thigh (BTW those nerve meds make getting tattoos really easy) and one on top of my left foot. Both are right where this tells me they'd be: http://www.nynapc.com/procedures/skin-biopsy/ Of course I only have three tattoos, but they're right where I don't need them for the biopsy.

[glenntaj]

--so at least you have to show it to the doctor; many do not know about all those serological tests for potential PN causes. And, of course, having that article to show is no guarantee that a physician will order all, or any of those tests, but it's better to go in forearmed. (Many of us here can tell stories of clueless, empathy-challenged physicians and of having to go to many doctors to finally get one interested in doing a full work-up.)

The skin biopsy is very simple--a few shots of xylocaine or other local anesthetic, a small "punch" of skin removed (usually about 3mm in diameter and 1mm thick), and a band-aid. It is so simple almost any physician can do it--it is the preparation and analysis which is complex and only done at advanced medical centers, as it requires electron microscopy and trained enumerators.

Generally, samples are taken from the lower leg just above the ankle, from the outside of the thigh several inches below the hip bone, and sometimes from the upper arm skin just above the elbow--these are the areas that have had the most "norming" done for comparison purposes. Generally these are done all on one side, but both sides can be done if an asymmetrical neuropathy is suspected. (In fact, a biopsy can be taken from any place there is hairy skin--but samples from a lot of other areas have not been 'normed' to any great extent in research and it would be difficult to tell what abnormal density would be.)