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Old 04-21-2008, 08:23 AM
 
Location: Sunny Naples Florida :)
1,452 posts, read 1,985,903 times
Reputation: 513

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You story sounds similar to mine. I went to over 30 doctors and was in the ER sometimes 20 times a month between the ages of 21-24..Have you been checked for Dysautonomia? Its an autonomic disorder, its what I ended up having that caused so much misery.. It was actually on Mystery Diagnosis on the discovery channel the other night, thats how rare it is... They can test doing a tilt table thats the only way to find it.. Its a disorder that effects everything you cannot control in your body, blood flow, breathing, heart rate etc. It can effect some of it , or all of it.. I get the pulsating sensations,, I also get vibrating sensations and my body is on a huge vibrating sensation kick right now.. There is no blood test or ekgs that will detect it.. This disorder will also effect your blood pressure and blood flow.. For 2 years I had consistant tingly feet, hands, soles, arms, and face. My eyes would twitchs as would other muscles (twitching can also be caused by a magnesium or potassium deficientcy). I was having stomach problems, hot flashes (because of the blood problems) circulation problems etc. I was getting ringing in my ears, sight problems like seeing sparkles or floaters or black spots and was a mess. Took me almost 3 years to get diagnosed.Believe me if they're not looking specifically for it , they're not gonna find it.. The only doc who's gonna diagnose you with Dysautonomia is a cardiologist.. Even if you're not having heart problems .. The one thing that helped me.. Compression stockings.. They had to be prescribed though because they have to be really tight.

Also with your fits and anger have you been to an ob/gyn and had your hormones checked?
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Old 04-21-2008, 06:28 PM
 
Location: Over the Rainbow...
5,963 posts, read 10,977,469 times
Reputation: 3151
Default Hormonal imbalance maybe

Quote:
Originally Posted by mkor4 View Post
Thankyou.I saw a neurologist over a month ago and he thought it was migraine and gave me nortriptyline and it didnt help me.Ive tried 7 different migraine medication and i dont think its migraine because of the spontaneous rage and crying etc.Im not taking any medication at the moment.
Although you are rather young for it, there is a possibility of a hormone imbalance going on. There is a test they can do for this. Worth checking out. Good luck. Please do not even consider suicide. There is an answer for this; it's just finding what it is. Please hang in there!
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Old 04-23-2008, 12:55 AM
 
Location: Seward, Alaska
2,739 posts, read 8,017,410 times
Reputation: 1990
Quote:
Originally Posted by mkor4 View Post
Congratulations Daniela on having your baby girl.
I hope your symptoms have improved

I have come back from he hospital.They couldnt help me.I also tried taking Lorazepam but it didnt stop my symptoms.
Anyone who is willing will you please pray for me for an urgent miracle from God-a correct diagnosis and treatment as i am going to commit suicide very shortly as i really feel i have gone insane now and i need to save myself from this hell/these symptoms.I am even wondering if i have schizophrenia but trying antipsychotics havnt helped previously.
I now have strange tingling/numbness/pulsating on toes,horror,gloom,strange feelings no human should have,huge headache at forehead,new symptom-a dense sensation like concrete being poured into my bldy and with it brings the hysterical rage or horrific gloom and pressure in my forehead-i know it sounds crazy but its like some energy?literally is going into my body.This is happening 100s of times day and night.
I need an urgent miracle.Sorry for my post sounding confused-thinks have become very bad.
PLEASE pray for me if you are willing
Thankyou very much
Mary
Mary: there is a lot of very good advice in this thread. But, as a lay pastor, I can tell you that suicide won't work, because you'll find that we all live forever, whether in the body, or out...and that we take unresolved problems with us. You won't get any relief that way. The right kind of doctor can probably help...problem is to find the right doctor, which often takes time. One thing I haven't yet seen mentioned, is why not take this problem to God? You know that as Creator He has made all of us, therefore He knows exactly how to fix any problem you may have. I don't care what it is, God can fix it. I know that sounds very simplistic, but it is 100% true. The average church pastor may be able to help a little (maybe), but for your situation I would DEFINITELY go and seek prayer at one of the various locations of the "Healing Rooms", if there is one nearby you. They are set up for one single purpose: to bring God's healing to those in desperate need. Welcome to Healing Rooms Australia
I don't think they charge anything.
Find the one nearest you, call them, and GO! Just do it!
If there is not one near you, please give me a message via PM...there are other ways we can deal with this too.
I shall have you in my prayers...
You've tried doctors. There is nothing wrong with going to doctors, but that apparently isn't working. Let's see what God can do...you may be amazed at the results...

Bud
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Old 04-24-2008, 07:02 AM
 
Location: NJ
12,535 posts, read 22,519,049 times
Reputation: 11472
Quote:
Originally Posted by mkor4 View Post
Anyone who is willing will you please pray for me for an urgent miracle from God-a correct diagnosis and treatment as i am going to commit suicide very shortly as i really feel i have gone insane now and i need to save myself from this hell/these symptoms.

Mary, do you still come here? I see this is the last post you made.

I know how hard it is, I'm in excruciating pain every day from my lower back down.

IMO, from what I am reading, it sounds like you have a few things going on. For one, you have lobe problems from what I remember reading. Look at the links I am leaving below. You need to start being treated for the different things and you need to find doctors willing to work together.

Depression - it sounds like you are depressed, and why wouldn't you be? Being in pain, I can tell you that either it will break you or it won't. I do pretty good IMO. What helps me is working in the garden. As much as it kills me with pain, there is nothing like gardening to take my mind off of it.

Legs / feet - sounds like restless leg syndrome

I think you need to find a better set of doctors.

I just made a post on another forum for someone with back problems, I am going to copy and paste it here as some info will be good for you.

You need to hang in there and try to focus on helping yourself. Try to get the history sheet going as well as printing the pictures and using a colored pencil or marker. It may take a few tries but you will figure out the best way to color it to mean the various pains you are feeling. I used one color for shooting pain, another for tingling, etc.

Things you are saying sound like you may have nerve damage coming from one of your disks. You are not crazy, nor are the rest of us. With the internet, I think many of us will be finding the answers to our pain and hopefully getting results. The thing that stinks these days is doctors specilize in stuff so you may have to see multiple doctors.

================================================== ========
Hypometabolism
This enzymatic dysfunction produces a variety of symptoms which are common to all hypometabolic conditions. Here is a partial list of the most common:

Anxiety
Asthma
Cold Intolerance
Depression
Dry Skin and Hair
Easy Weight Gain
Fatigue
Fluid Retention
Hair Loss
Headaches
Heat Intolerance
Hives
Insomnia
Irritability
Low Ambition
Low Motivation
Low Sex Drive
Poor Concentration
Poor Memory
Unhealthy Nails

Temporal Lobes
Temporal lobe google search - lots of info
================================================== ========
copied post
I injured my back lifting a 24 case of soda (filling a machine), then was doing inventory in a muddy greenhouse, counting plants, not wearing boots due to one of the bosses. I slipped and instead of falling, twisted my body, the rest is history. Wish I could go back & do that day over. I would have fallen on the junipers and probably wouldn't be in this shape. I am left with muscle spasms, nerve & ligament damage as well as another failed spinal fusion.

I'm going to give you more information then you probably need, but I would rather give it now at once then to make multiple posts. I've had back problems for almost 10 years (before the internet was this information highway) and wonder if I'd be as bad as I am now, had I had access to things I learned a few years in. There are many reasons for back / leg pain and depending on how you injured yourself & what treatment you get now will have an effect on the outcome.

As was mentioned, most people have back problems & don't know it until they injure themselves. You can sneeze wrong and end up in pain. Since everyone is different, the outcome will also be different. I now know there are steps to take, ice, heat, rest, physical therapy / exercise, patches, acupuncture, meds, injections, surgery. The best thing I can tell you is to take it easy and watch what you do while recovering. I was put on light duty and the bending I was doing hurt me more.

Get yourself organized.. now, just in case. Open up word and start a history sheet. You want to include:
1) Injuries
2 & 3 are set up in a table, I have the type of Dr in cell 1, then their name, address, date(s) & any procedures done.
2) Physicians - (including) Primary - this will give you a list of who you are seeing for this specific injury
3) Physicians – consults or currently not seeing
4) Treatments - what treatment, Drs name, address & date(s)
5) Tests - what test, Drs name, address & dates
6) CAT SCAN’s - MRI - Xray - same as above
7) MEDICATIONS - Current - dose as well as date
8) MEDICATIONS – Prescribed in the past - dose, date, original Dr that prescribed it and why I am not taking it any more.
9) PAIN HISTORY - describing the pain I have
10) Pictures of my pain (I will talk more about this later)

Every Dr I've handed this to loves it. All they have to do is scan this sheet and can easily see what I've done.

I would insist on an MRI just to make sure. I was not given one until I saw my own Dr a year later.

One thing that has always helped me is a jacuzzi. Since we don't have one in this house, we've gone to every hotel around and got a room for the night just for that. Our next house will have one, I can't wait.

Spasms - welcome to my world. The spasms were so bad in my back, butt & thighs that I couldn't walk, my muscles were like jello.

What I have found that worked to simmer the spasms down was injections called Trigger points along with a Methylprednisolone 4mg dosepak. It was actually the dosepak that did the most good.

Injections - I've had so many. I've had Botox in my lower back with no luck, as well as Epidural Steroid Injections in various places. For me, the most relief was obtained by SI Joint Injections. While Drs say it is very hard to injure the SI, do some reading about it to learn what the symptoms are. The Drs I've seen, none believed me.

I mentioned pictures. The best ones I've found are like the posters in Dr offices. My favorites are:
1) Dermatomes (http://www.shaunhussain.com/my_notebook/topics/dermatomes.png - broken link) more can be found at this google image search
2) Spinal Nerves (http://www.drshoshany.com/user_images/spinal-nerve-distribution-s.gif - broken link) more at the Google image search for spinal nerves
3) Lumbar muscles or this one you can find more here

If you'd like to see what my pictures look like, you can see them here and here. As you see, I used a photo program & colored where my pain was at the time I did those. I have to update it.

I can't stress how much those pictures have helped me. Print them out and draw on them. You should be able to tell if it is disk, muscle or nerve pain. If you can identify the body part, do a google search chances are someone else has posted about it some where. I found many forums where I could talk to others so that I could figure out if it was my problem or not.

If they put you on medications, be sure to read about them so that you know the side effects. The drug neurontin is a pretty helpful drug for nerve pain but the side effects are bad. I swear I lost brain cells from it. I have been on just about every medication & one thing to keep in mind is your prescription plan, as some don't cover certain meds unless you get generic and while they say the generic is just as good, for something like percocet it is not. Another problem I've run into is being cut off on meds around August or September, since there is a cap put on how much they will put out. If meds are changed, it will quickly eat up the maximum and you could be paying 100%. This gets expensive.
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Old 04-24-2008, 06:57 PM
 
2 posts, read 26,392 times
Reputation: 10
Default Same story

Quote:
Originally Posted by Roselvr View Post
I know how hard it is, I'm in excruciating pain every day from my lower back down.

================================================== ========
copied post
I injured my back lifting a 24 case of soda (filling a machine), then was doing inventory in a muddy greenhouse, counting plants, not wearing boots due to one of the bosses. I slipped and instead of falling, twisted my body, the rest is history. Wish I could go back & do that day over. I would have fallen on the junipers and probably wouldn't be in this shape. I am left with muscle spasms, nerve & ligament damage as well as another failed spinal fusion.

I'm going to give you more information then you probably need, but I would rather give it now at once then to make multiple posts. I've had back problems for almost 10 years (before the internet was this information highway) and wonder if I'd be as bad as I am now, had I had access to things I learned a few years in. There are many reasons for back / leg pain and depending on how you injured yourself & what treatment you get now will have an effect on the outcome.

As was mentioned, most people have back problems & don't know it until they injure themselves. You can sneeze wrong and end up in pain. Since everyone is different, the outcome will also be different. I now know there are steps to take, ice, heat, rest, physical therapy / exercise, patches, acupuncture, meds, injections, surgery. The best thing I can tell you is to take it easy and watch what you do while recovering. I was put on light duty and the bending I was doing hurt me more.

Get yourself organized.. now, just in case. Open up word and start a history sheet. You want to include:
1) Injuries
2 & 3 are set up in a table, I have the type of Dr in cell 1, then their name, address, date(s) & any procedures done.
2) Physicians - (including) Primary - this will give you a list of who you are seeing for this specific injury
3) Physicians – consults or currently not seeing
4) Treatments - what treatment, Drs name, address & date(s)
5) Tests - what test, Drs name, address & dates
6) CAT SCAN’s - MRI - Xray - same as above
7) MEDICATIONS - Current - dose as well as date
8) MEDICATIONS – Prescribed in the past - dose, date, original Dr that prescribed it and why I am not taking it any more.
9) PAIN HISTORY - describing the pain I have
10) Pictures of my pain (I will talk more about this later)

Spasms - welcome to my world. The spasms were so bad in my back, butt & thighs that I couldn't walk, my muscles were like jello.

If you'd like to see what my pictures look like, you can see them [URL="http://home.comcast.net/~roselvr1/images/SpineNerveCroppedColorCoded.jpg"]here[/URL] and [URL="http://home.comcast.net/~roselvr1/images/Piriformis1ColorCoded.jpg"]here.[/URL] As you see, I used a photo program & colored where my pain was at the time I did those. I have to update it.

I can't stress how much those pictures have helped me. Print them out and draw on them. You should be able to tell if it is disk, muscle or nerve pain. If you can identify the body part, do a google search chances are someone else has posted about it some where. I found many forums where I could talk to others so that I could figure out if it was my problem or not.

If they put you on medications, be sure to read about them so that you know the side effects. The drug neurontin is a pretty helpful drug for nerve pain but the side effects are bad. I swear I lost brain cells from it. I have been on just about every medication & one thing to keep in mind is your prescription plan, as some don't cover certain meds unless you get generic and while they say the generic is just as good, for something like percocet it is not. Another problem I've run into is being cut off on meds around August or September, since there is a cap put on how much they will put out. If meds are changed, it will quickly eat up the maximum and you could be paying 100%. This gets expensive.
I am a newcomer, looking for help with my lower back injury and found this post thankfully.

I hurt my lower back too, similar story as yours but not at work. How do you continue to go to work every day? I have to work and it is so hard to go and be in pain every day... I feel disabled but am wondering if others out there have been successful going on disability somehow. Do you take meds now that do not affect your ability to work? Your diagrams are very helpful, I think I'll use them to talk to my Dr. - thanks
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Old 04-25-2008, 04:25 AM
 
Location: NJ
12,535 posts, read 22,519,049 times
Reputation: 11472
Quote:
Originally Posted by ShoreLuvNJ View Post
I am a newcomer, looking for help with my lower back injury and found this post thankfully.

I hurt my lower back too, similar story as yours but not at work. How do you continue to go to work every day? I have to work and it is so hard to go and be in pain every day... I feel disabled but am wondering if others out there have been successful going on disability somehow. Do you take meds now that do not affect your ability to work? Your diagrams are very helpful, I think I'll use them to talk to my Dr. - thanks
What part of NJ are you in?

How did I go to work every day? It was not easy especially since I was lifting plants and doing physical labor. I quit the job I got hurt at after a year of being hurt, went to another place doing pretty much the same thing, so I had to quit.

I haven't had a paycheck in 6+ years. Thankfully I was married, and I'd had a little bit of savings from selling a house. I was also getting child support from an ex. It still hurt to miss the paycheck every week.

I can't begin to tell you what a nightmare it was trying to get disability. I ended up having a few appeals, and at my last one, finally lucked out. I think it took me 4 years to go through the system, which is typical.

It was suggested to me at the appeals that I get a job sitting, but with my back problems, that is the pits too. I can't sit or stand for long.

I'm on meds but am under medicated because I can't stand being stoned. It took me years before I even touched a pain pill. I didn't want it, especially since I had a younger child. I didn't have the luxury of taking a muscle relaxer and laying down.

Do you have a diagnosis?
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Old 04-25-2008, 11:13 AM
 
2 posts, read 26,392 times
Reputation: 10
I'm in North Jersey but would be willing to travel to see a good dr. Ive have been told that it is nothing more than tight muscles... have been on muscle relaxers and I think its something more than that. Youre lucky to have a husband & now disability coming in to help with not having the paycheck. Unfortunately I dont have anyone but myself to rely on for money so disability would really help.

Thanks for you sharing your story with us - at least it makes me feel better knowing there are others out there who share my pain.
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Old 04-25-2008, 01:10 PM
 
Location: NJ
12,535 posts, read 22,519,049 times
Reputation: 11472
Quote:
Originally Posted by ShoreLuvNJ View Post
I'm in North Jersey but would be willing to travel to see a good dr. Ive have been told that it is nothing more than tight muscles... have been on muscle relaxers and I think its something more than that. Youre lucky to have a husband & now disability coming in to help with not having the paycheck. Unfortunately I dont have anyone but myself to rely on for money so disability would really help.

Thanks for you sharing your story with us - at least it makes me feel better knowing there are others out there who share my pain.
The problem with having a husband is that he has health insurance that is not as good as what the state would give me. My meds are not fully covered either, I easily spend almost all of the small disability check I get every month on meds.

I have 2 doctor names from North Jersey. One is out of Overlook Hospital IIRC, the other is located in Westfiled. Both are supposed to be very good.

Have you tried acupuncture?
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Old 03-30-2009, 04:29 PM
 
3 posts, read 82,351 times
Reputation: 20
This is such a heartbreaking thread of posts. I have experienced all of the same symptoms, from the debilitating pain to the shaking inside my head to the suicidal thoughts. My problem DID turn out to be heavy meatal toxicity, which was discovered using a "challenge test" in which different IV's were administered to mobilize and bind with metal poisons so that my body could eliminate them. Before and after urine tests were done to determine the amount of toxins that had been drawn out from my bones and deep tissues. (Mine was a 6 hour test, not 24) I was tested not only for Mercury, but for Lead, Arsenic, Antimony, Cadmium, Bismuth and other toxins. My body was trying to eliminate small amounts of the metals, as was shown in the before test. The Cadmium after the provacative IV's was at the top of the chart, and the Lead and Mercury were OFF THE CHART! After 6 months of IV chelation therapy, my Lead and Mercury content is about half what it was, although the Lead is still off the chart. I have a way to go, but I am feeling much better. Chronic toxicity has to be tested with the provoked test that will draw the toxins out of their hiding places where the body has stashed them and where they are causing so much trouble. I suffered for years before reading an article about chelation and being tested for metal toxicity. It really has saved my life.
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