my nerves are shot

[mellowtigger]

Well, I scheduled another appointment for tomorrow morning at the same clinic. This time, I'll be seeing Dr. Zoberi. (Apparently, she speaks Hindi. How cool is that?) Anyway, I thought that B12 was the cause of my problems, but the test results seem inconclusive to me. Nevertheless, I'm still treating this issue as a grave concern since B12 depletion remains the most likely cause in my opinion, and it can cause dementia and death if the neuron deterioration is left untreated.

An approximate timeline, as much as I can remember offhand:

15 years ago is when the carpel tunnel syndrome appeared. Totally expected. As much time as I spend at a keyboard (torture device), it's surprising that problems didn't show up even sooner.

8 years ago is when the permanent diarrhea started. Not just a phase, it has been a permanent feature of my life for nearly a decade. It's almost like fluids just fail to get absorbed into my body, so it and solid food all just wash right through me. I started eating only 1 large meal a day to help avoid a daily routine of running to the restroom very 45 minutes. I had good insurance at the time. I saw lots of specialists. I had biopsies, x-rays, blood tests, and other tests done. No cause of my problems was ever declared. I wasn't especially concerned about it at the time because it's a fairly common occurrence in people with autism. One of the specialists even mentioned that fact to me.

4 years ago is when the neuropathy started in my feet. I had insurance at another job but not as good. When the neuropathy spread to my other foot, I finally went to see a doctor. Later, a podiatrist found that my B12 level was borderline. He had me try special B12 pills, but nothing really improved. I left that job after the second 3-month(?) period on the special pills. That insurance policy ended with the job. I never went back to see that doctor to maybe get a referral to a neurologist specialist.

2 years ago is when I stopped having health insurance altogether.

1 year ago is when the muscle twitches started. They got progressively more annoying.  At one point this summer, I even bought a paper booklet so I could write down where each one occurred so I could determine if twitches appeared only in certain areas. I never got around to writing that journal because it became obvious that my whole body was affected. Each muscle twitch (only one at a time) could appear anywhere on my body. I also started getting tired around then. Gardening is fun, but I just didn't spend as much time outdoors this summer as I did last year.   Sometimes I would get muscle cramps in my lower legs and feet that would wake me up at night.

1 month ago is when the burn/tingle started at the tip of my tongue. It feels sort of like the neuropathy in my feet when it first started.

1 week ago is when the muscle twitches occurred in more than one place on my body at the same time. It started in the evening and was so annoying (face, forearm, and thigh simultaneously) that it kept me awake until about 4am. The next morning, I found a "free" clinic where I could go to see a doctor.

I guess we'll find out soon just how much of a societal burden that I'm willing to become.  I'd very much like to have a name for whatever is happening to me, but I'm not sure how far "free" health care can go in providing such diagnostics.  Real insurance is no longer an option for me either.  Can you say "pre-existing condition", boys and girls?  I knew you could!

Comments

[sctmpls.livejournal.com]

Hmmm. Well. I deal with the constant diarrhea and near constant nausea and after many exhaustive tests the doctor finally decided it was Irritable Bowel Syndrome brought on by a bout of severe viral gastroenteritis that I had nearly 5 years ago. I can control the diarrhea mostly with diet and the nausea with some generic prescriptions to the point where it is not debilitating.

My mother suffers from peripheral neuropathy for which they have never been able to diagnose a cause. They just treat the sympotoms. Eventually it was so severe, she was placed on permanent disability. This has been going on for about 15 years. The drug that has helped her the most is Cymbalta for dealing with the nerve pain. There is currently no generic and I have no idea how much it costs.

I empathize with you and hope that the doctors are able to get to the bottom of it. Good Luck and let me know if you are interested in the diet I follow at all.

[mellowtigger]

Have you made a detailed post about your diet before? I know I've read where you mentioned it a few times, but I don't remember seeing it discussed as a post in itself.

[sctmpls.livejournal.com]

I've posted mostly about my frustrations, not about my successes :-). It's not perfect, but it's a diet developed by a woman who was diagnosed with IBS at 18 and who has had it since she was 9. The basis of the diet is all around soluble fiber and something called the gastrocolic reflex. Basically, when you put food in your stomach, it triggers contractions in your bowels. In people with IBS, the theory is the brain-gut interaction is not functioning correctly and you either end up with too violent of contractions = diarrhea or too few contractions = constipation. It's basically an elimination diet where you eliminate a lot of foods from your diet that have a tendency to stimulate this reflex and concentrate on soluble fiber which forms a "gel" in your bowels, helping to promote more regular contractions. Good foods are things like rice, potatoes, beans, winter squash, avocadoes, etc. Foods to avoid are things high in fat, or insoluble fiber like bran, raw veggies, etc. You can find out lots more information on the diet on her website which is

http://www.helpforibs.com

Get past the girly look and feel of the website and especially focus on her food advice. Here is a good page with a cheat sheet of foods to avoid and foods to concentrate on.

http://www.helpforibs.com/diet/heathersibscheatsheet.pdf

I also discovered through the process of elimination that I was lactose intolerant and while I can tolerate butter and cheese, that's about all the dairy my system can handle without cramps and diarrhea. Let me know if you have any questions. You can also always send me a facebook message or e-mail me at sctmpls at hotmail dot com if you want to chat more offline.

BTW, Her cookbook is well worth the investment. It's a lot of actually good tasting recipes that are all safe to eat.

[jpeace.livejournal.com]

This is terrible to hear. Please do whatever is required to take care of your health.

[dodecadragon.livejournal.com]

have you considered sodium? I recently learned my arrhythmia might be due to a low sodium diet. So I started adding more sodium to my food to see if it helps.

[foeclan.livejournal.com]

I mentioned this a while back. Minnesota publishes a guide (http://healthinsuranceinfo.net/statecoverageguides/MinnesotaHealthInsuranceGuide.pdf) for getting and keeping health insurance in Minnesota. It lists the available programs.

For prescriptions, they have links to Canadian pharmacies (http://www.state.mn.us/portal/mn/jsp/content.do?id=-536885395&agency=Rx) where you might be able to mail-order some things cheaper (assuming there's no generic you can go get for $4 or so at Target).

This page (http://www.dol.gov/ebsa/publications/yhphipaa.html) has some information on dealing with pre-existing conditions. Basically, you can get around them if you haven't seen a doctor for that condition in the past 6 months. I think when I signed up for MCHA, even if I didn't have a waiver for it, I'd've been able to be covered after 6 months for any pre-existing conditions. MCHA (http://www.mchamn.com/) is a group health plan, and is kinda pricey, but anyone turned down for pre-existing conditions elsewhere is eligible for it. It's administered by Medica, but is a state program.

[mellowtigger]

I was planning to get onto that program as soon as I was out of debt. I'm under $900 on my card right now. (It would've been $0 if the insurance company had just outright paid my whole rental car bill. I still need to work that out.)

[ohbrett.livejournal.com]

I'm really sorry to hear about this (just catching up). I hope you figure it out and start feeling better about it all very soon. *hugs* too.