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Old 12-22-2006, 03:09 PM #21
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Heart Remembering Christmas 1997

Quote:
Originally Posted by heyjude5050 View Post
Hi Karen,
Klonipin is not a pain med. It is in the family of bensodiazepine, which is used at times for seizure disorders, Parkinson's or as a anti-anxiety drug.
It works on the central nervous system and they have been using it to treat restless leg for a while now. Still, requip is the only one so far that is FDA approved.
I take it at bedtime, so all I know is that I can sleep pain free, so that is a good thing and also that one would have to back down quite slowly. My body is quite used to it so therefore I am sure that I would have some sort of redrawals if I just up and quit taking it.
So far in there research, something is misfiring in the brain and sending the wrong signal to the legs. That is pretty much how my sleep doc explained it.
Thanks again for your input,
Judy
OH, Sorry I completely misunderstood.

Do I understand now: You have a lot of leg pain? and the "creepy crawly" thing that they mention in the Requip commercials?

What really strikes me as I read what you've written is the leg pain... only I'm not sure I'm reading that right.

Here's the thing, in and around 1997 I was having such horrible leg bone pain at night that I was getting less than three hours sleep, even counting what I could catch during the day.

I was sure it was from stress... the IRS had levied me out of business collecting a year I'd already paid, and I could not get them to correct their work. U.S. News & World Report used some of my experience in a news story on abuse by the IRS.

Okay, so I thought it was the stress. And I always thought there were spiders crawling on my legs. I was constantly batting them off, but when I looked before I batted, no spider.

Then I was going to kill myself in protest of abuse by IRS and I flipped a coin to see if it was a good idea, (not wanting to go to hell) and the coins said yes.

OOPS! I mean, I was surprised.

But, I kept my word, as I'd been writing letters saying that if as a result of the IRS abuse my home was foreclosed or I ran out of money I would kill myself in protest.

However, I was found in my car and taken to hospital and saved. And in the tests they run on people who try to kill themselves there was a B12 test. My level was reported as "Profound Anemia." That was in May, 1997.

But then the police came to the hospital and took me to jail because the weeds in my front yard were too tall.... Chamisa is a local shrub that grows quite large.

So no one ever told me much about what "profound anemia" meant. I tried to sue the police for taking me out of hospital, and I was able to get my hospital records that way. (The police settled for $12,500 -- actually, it was the city that settled, as I don't think you can sue the police exactly. I forget. Sorry.)

Okay, so I knew my B12 level was low and that was why I was said to have "profound anemia."

And they'd given me a shot in hospital.

To continue having shots was $22 a shot and I didn't have any money due to having been put out of business. So I thought, well, I'll just get the MegaB vitamins from K Mart and take those. They said they had some B12 in them.

So I took two or three bottles in one month. I was taking two or three every hour with a lot of tea and other liquid.

And, to my huge surprise I stopped having any allergies.

But, when I had a second B12 test, my level was unchanged.

I had a couple more of the expensive shots, and then on Christmas Eve 1997 a new doctor that I went to prescribed B12 shots that I would give myself, so after that I had them regularly, and in fact the neurologist I went to after I was well enough to go back to work (not as a Realtor, I wasn't that well, but as a front desk clerk) said to take extra B12 shots when I was under stress.

So, some months later the pain in my legs was gone and I was feeling the spiders much less frequently.

to me, it was a miracle.

But at the same time, I was pretty upset that the original doctors had failed to tell me clearly about B12.


I mention all of that because maybe it will ring a bell with you. I hope you get the Methylcobalamin. I am so sure it will help.
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Do you know the symptoms of low vitamin B12.... ?

Last edited by ConsiderThis; 12-22-2006 at 03:14 PM.
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Old 12-22-2006, 05:39 PM #22
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Karen,
I truly believe that stress is the cause of many illnesses, especially in this fast-paced world we live in. I know for a fact that some of my ails are stress related. Money is a big issue for the majority of the population these days. I think there is just the rich and poor................no more middle class America anymore.

The commercials for restless leg are almost comical. Unless you have it, there is no putting it into the right words. Sometimes it feels as if there is a tight vise just below the knee area and it is slowly being slid down my calf to my ankle. If you try not to move your legs or shake them, you're entire body will tremble so it is impossible not to shake them.
I think it is a bit different for everyone depending on the severity. Mine is severe and only gets worse with age.

The deep bone pain you mentioned is definitely there and at times it feels as if the bones are being crushed.
So there are different levels,and years ago I had the creepy-crawly sensation, now it is just down-right painful.

You are so kind to send advice my way. I haven't been out of the house for a few days but I will get the things you mentioned when I feel better.

HAVE A WONDERFUL HOLIDAY SEASON AND TAKE GOOD CARE OF YOU.

You sound like you have had some very trying times and it also sounds like you are a very strong woman.
Judy
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Old 12-23-2006, 01:54 PM #23
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Quote:
Originally Posted by heyjude5050 View Post
Karen,
I truly believe that stress is the cause of many illnesses, especially in this fast-paced world we live in. I know for a fact that some of my ails are stress related. Money is a big issue for the majority of the population these days. I think there is just the rich and poor................no more middle class America anymore.

The commercials for restless leg are almost comical. Unless you have it, there is no putting it into the right words. Sometimes it feels as if there is a tight vise just below the knee area and it is slowly being slid down my calf to my ankle. If you try not to move your legs or shake them, you're entire body will tremble so it is impossible not to shake them.
I think it is a bit different for everyone depending on the severity. Mine is severe and only gets worse with age.

The deep bone pain you mentioned is definitely there and at times it feels as if the bones are being crushed.
So there are different levels,and years ago I had the creepy-crawly sensation, now it is just down-right painful.

You are so kind to send advice my way. I haven't been out of the house for a few days but I will get the things you mentioned when I feel better.

HAVE A WONDERFUL HOLIDAY SEASON AND TAKE GOOD CARE OF YOU.

You sound like you have had some very trying times and it also sounds like you are a very strong woman.
Judy
You know, Judy, that's it in a nutshell.

Medicine is expensive, and seeing a doctor is expensive. Sometimes it just takes so much that it sends people into bankruptcy or foreclosure, or maybe people just eat the cheapest food so they can by the expensive medicine.

I've more than once had doctors prescribe things that were 60 or more dollars when there was a perfectly good thing available for under $5.

When I first got tetanus the doctor prescribed an antibiotic that was way more than the money I had. When I called about it, the receptionist said that I could buy the medicine or not, it was up to me, but they weren't changing the prescription.

So a few days later when the lady came to help me, through traumatic brain injury, I asked her to call and explain to them what I had in the bank, and how it was not enough and I didn't have any other money.

That worked.

But I really don't think I'd be as sick as I am today if I'd known about how powerful vitamin C is, in the beginning. The Homeless doctor, whom I was able to see after my home was foreclosed, told me that a lot of my problems were from nerve damage from the tetanus.

So that's what makes me think that if I'd had proper treatment to kill the clostridia sooner, I'd be much healthier today.

I know what you mean... I am dreading having to go out next week. I have to go to the Appeals Court in the further attempt to get my condo back.

See, I know that if I didn't have the brain damage I would not have lost it.

Ooops, this train of thought tends to make me feel like crying and that does NO GOOD.

So, back to a more hopeful outlook.

Yes, get the Methylcobalamin.

Have you thought about ordering it from the web? I order a lot of things now.

If you do order it, take a look at the Jarrow Whey amino acids. I think they are helping my nerves heal in a stronger way. Also, they keep me from feeling starving and eating things that aren't healthy just to try to get rid of the feeling. (the vanilla is a bit... bitter tasting, I'm not so fond of it; but the chocolate and vanilla mixed are dynamite, with some cinnamon. MMMMM)
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Old 01-21-2007, 01:36 PM #24
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Quote:
Originally Posted by heyjude5050 View Post
Barb,


I have:
graves (even thou I had a thyroidectomy at 39 yrs)
hyster three months after thyroidectomy, still 39 (talk about a hormonal nightmare, lol)
myasthenia gravis (positive and negative test results)
RLS and PLM
sleep apnea
severe osteoporosis (secondary also)
orbital pseudo tumor
double vision/ chronic blethritis and eye inflammation
rapidly increasing neuropathy of hand, jaw and feet
chronic low potassium
chronic high cholesterol
had hyperparathyroidism ( haven't had time to deal with that lately)
mild atrophied of right kidney
Barrett's esophagus
Nutcracker esophagus (spasming, too much pressure)
several types of ulcers, come and go, duodenitis never goes away
way too many dental problems since I am a tooth fanatic
wounds do not heal easily of late
degenerative shoulder (2 surgeries)
osteoarthritis of knees (2 surgeries also)

Geez, that is all I can think of now, but since I have been on this site, I have realized that my problems pale in comparison to others. I just want to be diagnosed after about 5-6 yrs of decline.
But my heart goes out to all on the neurotalk. I think it is the best thing that has happened to me.

I have been off of work for a month, live alone and need all of you more than you can imagine.

Great big hugs to you and I hope the info I gave can help you or anyone to enlighten me.

Thank you so much for your insight. Those affected do know more than the doctors at times. With a site like this there is bound to be someone who actually feels what we feel and can diagnosis, or at less help he docs.

After all, they are human, and working with them in surgery shows me first hand what they do and will do for the life of others. They never cease to amaze me.

I have seen many a day when a surgeon is in on one case scheduled for 2 hours and after 8-9 hours, or more comes out and the person is going to make it. They rock,

There is the good and bad, but I have the joy of working with the best.......

Great big hugs and thank you

Judy
Barretts esophagus, can be a RED flag for celiac disease...which could explain several of your other issues, PLEASE check it out (gluten sensitivity forum here at neuro talk)
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Old 01-24-2007, 03:30 PM #25
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Default Judy

It sounds like what I have peripheral neuropathy, just a guess but you may want to have some nerve conductions tests to fid out. Its sometimes a long hard road to find a diagnosis. I wish you the best of luck.

Dana
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