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Old 10-23-2012, 10:23 PM #1
Mustang0227 Mustang0227 is offline
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Default 25 year old male. very scared.

Hi. I'm a 25 year old male. My symptoms started on 9-3-12 and started as tingling in the left foot and left arm. It then progressed into electrical shock sensations on the skin in different areas of my body. Then it turned into pain in my extremities, joints, fingers. My nerve conduction study showed neuropathy in the legs but i am convinced i have small fiber throughout my whole body since i feel the pain and electrical shocks everywhere. brain mri, neck mri, and bloodworks have all came back normal. I'm trying to convince my neuro to send me for a skin biopsy even though he says he doesnt think i need that yet. Someone please help me. I need someone to talk to about this horrible problem. email me at (please use forum contact methods)

Last edited by Jomar; 10-23-2012 at 10:26 PM. Reason: removed email address
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Old 10-24-2012, 06:23 AM #2
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Default re-scared

Mustang0227,
Take a deep breath. Not all neuropathies are serious, but they should be looked into. I do understand your fear. Two years ago, I sat down in a recliner, feel asleep for ten minutes, and awoke with complete paralysis of my left arm from the elbow down. I could feel, and knew what I wanted to do with the arm, and hand/fingers, but they were completely paralyzed. I went into a neurologist, who sent me to rehab, didn't seem concerned, but when I showed up at the physical therapist's office, she read the diagnosis, I almost flipped out. She said the neurologist's diagnosis was radial nerve palsy and I MIGHT be able to get some use back, if I got any back AT ALL! It would have meant the end of my career. Wiped out in ten minutes. 6 weeks later, movement began to return, and it is now normal.

Don't expect the worst, regardless of what is said. Take it day by day, and for your peace of mind, get a second opinion. You may have a large nerve that is effected, and since our smaller nerves branch off the larger ones, it can effect the messages the smaller nerves are getting.

You aren't being silly or paranoid in your fear. When things like that happen to us and we don't understand what is going on, its terrifying. Also, if you are in panic mode, you may get additional pain or tingling. Have you ever had someone jump out from behind a door and yell Boo!! when you weren't expecting it? It feels like a blast of shooting nerve stimulation all over the body.

Find out if there is a compassionte neurologist in your area that has good people skills and will take the time to explain what is happening to you. Having someone say, "well, you have a neuropathy" and not much else, it leaves you with a lot of fear and questions.

Let us know how things are going.

Sam
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Old 10-24-2012, 07:30 PM #3
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Default

where in the midwest are you? i used to live in cleveland and wish i was still there because i probably would have gotten better treatment at the cleveland clinic. down here in florida it is really hard to find a good doctor. but in regards to the neuropathy most of my worry comes from the pain also. the more painful it gets the more i start worrying.
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Old 10-25-2012, 07:13 AM #4
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Default Hi Mustang

I am sorry the pain is so Bad. You are in Florida. I go to a fantastic Neruologist. His name is Dr. Kevan Boyer, in Bradenton Florida. He not only is extremely intelligent, he has compassion. His nurse on the other hand, is crabby all the time. I am not sure of the protocal to get into seeing him, and if you need a doctors referral or not. It may be worth it to call his office to see how he does things. 941-750-0602. I also go to the best doctor I have ever met to deal with pain. Dr. Emese Simon On Robinhood lane in Sarasota. She is a physiatrist/ and a pain specialist. She has helped me alot, even though I don't have the same conditions as you do. Maybe it would be worth the drive to seek out these physicians. It is usually by word of mouth that you find the best doctors anyway. I hope that you can find a resolution. Nobody wants to suffer like that. I wish you all the best. ginnie
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Old 10-25-2012, 11:11 AM #5
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Mrs. D, I watched the videos. I love the Mercola site as well as Life Extension Foundation. I am a member of LEF. Thank goodness for them and other sites that tell the truth.

I am actually feeling so sad now reliving what I went through with Leaquin. The sad thing is that my Gasto doc I have now says he sees no evidence I had that. Makes me ill to think of that.

I know so much more now, how sad we have to learn the hard way. I am going to tell my son and his wife. I don't think I have done that.

Thanks for the videos.
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Old 10-25-2012, 11:40 AM #6
Breezy55 Breezy55 is offline
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Default Re/very scared

Mustang,beleive me when I say that we all know where you are coming from!! It took 3 year's before any Dr's dx me with RSD. They all kept telling me that it was all in my head! I fianally went to a neurologist who gave me am EMG test. My finding's were way off of the chart's!! I now have full body RSD,for over 10 year's now. I guess my ? to you is,have you seen a Neurologist or any pain Dr's?? I cannot stress enough how much you have to push your issue's. Or you will just be another #. I also wanted to welcome you to this Great Place! It has so many wonderfull people who are full of knowledge! Hang in there! Breezy55.
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Old 10-25-2012, 01:51 PM #7
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Quote:
Originally Posted by Mustang0227 View Post
where in the midwest are you? i used to live in cleveland and wish i was still there because i probably would have gotten better treatment at the cleveland clinic. down here in florida it is really hard to find a good doctor. but in regards to the neuropathy most of my worry comes from the pain also. the more painful it gets the more i start worrying.
Pain and fear are a difficult cycle to break. Especially when you don't have answers. Finding a diversion helps some. Whether is coming to the forum, reading or a good show on the tube, anything to get your mind off the pain for a bit. Talking yourself through it may help as well. Its easy to be consumed by pain and fear if you let it. I wish I had something more tangible to offer, but I haven't figured that one out for myself, let alone be able to stop someone else's pain.

I'm in Indiana. Not being raised here, it surprised me when I finally found a pain specialist here. He's great and his staff is nice too. It was only luck that I stumbled upon his clinic. There may be someone in FL. that you just haven't found yet. Don't give up. If you have a good friend or spouse, just venting to them can make a difference. I'm glad you found this forum.

Sam
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Old 10-25-2012, 02:17 PM #8
Jesse M Jesse M is offline
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Quote:
Originally Posted by Sam View Post
Pain and fear are a difficult cycle to break. Especially when you don't have answers. Finding a diversion helps some. Whether is coming to the forum, reading or a good show on the tube, anything to get your mind off the pain for a bit. Talking yourself through it may help as well. Its easy to be consumed by pain and fear if you let it. I wish I had something more tangible to offer, but I haven't figured that one out for myself, let alone be able to stop someone else's pain.

I'm in Indiana. Not being raised here, it surprised me when I finally found a pain specialist here. He's great and his staff is nice too. It was only luck that I stumbled upon his clinic. There may be someone in FL. that you just haven't found yet. Don't give up. If you have a good friend or spouse, just venting to them can make a difference. I'm glad you found this forum.

Sam
About Keeping your mind off of pain - or "Escapes"
as they are called.

Here are some things that help me personally. ...As it is, I have flare ups of bad days when the pain is very annoying and almost unbareble, but then days when I certainly feel it fading away...times where the pain is far "less frequent" and "less painful" - the 2 ways I judge my healing. I can only hope these are good signs.

I keep a "daily journal" of how I feel each day & what I've done. This helps me figure out what irritates my symptoms as well as what heals them, i.e, bad weather, exercise, new vitamins, whatever.

I started eating better and lost nearly 30 pounds in 3 months. (quit Fast-Foods) I will continue to try to be a healthier person, even when this neuropathy stops - better for life in general I think .


Escape #1: Dreams

On an odd note - I practice some strange "escapes" that keep my mind off of the pain. First off, I take no medication for the pain at all. I only take 0.5 mg of Clonozepam/Klonapin twice a day for the anxiety - the rest of the stuff I take are vitamins. So I'm always looking for an escape.

-- so, back to the escapes - I realized I dream every night and I kind of live a 2nd life there (in the dreamworld that is - like most of us ) where the pain can NOT follow. So that's something we can all look forward to EVERY night.

In the morning, I write down the dreams in a daily journal so I can remember them as life-experiences. We literally spend half our lives sleeping, so I figure remembering the dreams (no matter how odd or silly) owes the same as remembering real experiences at times.

Escape #2: RPG Video Games

I also got into playing certain types of Video games. Yes, I'm 42 years old, but I noticed that playing "RPG" or Role Playing Games (On X-Box or PlayStation, or whatever) provides a weird escape from real life. RPG games don't require much rampant button pushing as most video games; so it's not so bad on your fingers - and after a while playing them, they place your mind in an alternate world so to speak.

This might seem downright stupid. It certainly sounds stupid, but it's not. I actually got this idea when I heard that video games are banned from prisoners -why? Not because its entertainment (many prisoners have TVs) but because they make time pass quicker and provide a kind of limited alternate reality that Wardons don't want prisoners to have.

It seems to me, that your mind can only focus on certain things at a time - playing video games for a while during your day or after work in your personal time WILL relax you and take your mind off of depressing thoughts -plus they are just fun in general.

There are many RPG games for women, too like any of the SIMS games. I play Fallout 3 -an apocalyptic game & some cool Star Wars ones, too. ..Is this immature? -- it probably is - does it work as mental therapy? - I KNOW it does for me.

In my therapy group other people use TV shows to pass time and for similar reasons (any Netflix or cable TV Series to be specific) to get their minds off of negative things - I think gaming may be similar, just more interactive. The difference being, games place YOU in the show rather than just watching it.

Anyway, that is my two thoughts regarding "Escapes".
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Old 10-25-2012, 03:08 PM #9
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Lightbulb

Magnesium oxide is not absorbed to any useful extent. It remains in the GI tract.
Mixtures tend to not be real mixtures. Magnesium oxide is the smallest volume maker in pills because oxide does not weigh much. Gluconate is a heavy portion however, and I would not expect much of it in that tablet.
There is a link to the studies on absorption in my magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html
Magnesium oxide is however an excellent laxative and is used as such (Phillips tablets).. because the magnesium remains in the bowel.

I've called manufacturers and they cannot tell as a rule from their recipes how much of each is in a mixture.
http://www.drugstore.com/products/pr...6&aparam=92272

This means 63% of your daily RDA requirement value. However I take issue with that. Magnesium oxide is 60% magnesium elemental by weight. That 63% on the label does not mean you will ABSORB any of it.
So 250mg of the magnesium oxide is 150mg magnesium by weight, but very little if any is absorbed from this. Don't count on anything being helpful from this product therefore.
Quote:
Oral magnesium supplements combine magnesium with another substance such as a salt. Examples of magnesium supplements include magnesium oxide, magnesium sulfate, and magnesium carbonate. Elemental magnesium refers to the amount of magnesium in each compound. Figure 1 compares the amount of elemental magnesium in different types of magnesium supplements [28]. The amount of elemental magnesium in a compound and its bioavailability influence the effectiveness of the magnesium supplement. Bioavailability refers to the amount of magnesium in food, medications, and supplements that is absorbed in the intestines and ultimately available for biological activity in your cells and tissues. Enteric coating (the outer layer of a tablet or capsule that allows it to pass through the stomach and be dissolved in the small intestine) of a magnesium compound can decrease bioavailability [29]. In a study that compared four forms of magnesium preparations, results suggested lower bioavailability of magnesium oxide, with significantly higher and equal absorption and bioavailability of magnesium chloride and magnesium lactate [30]. This supports the belief that both the magnesium content of a dietary supplement and its bioavailability contribute to its ability to restore deficient levels of magnesium.
from http://ods.od.nih.gov/factsheets/Mag...hProfessional/

My link to my magnesium thread gives more details on this subject. You can read further there.

Oxide therefore does not give much if any absorption into the blood stream, and is to be avoided.
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Old 10-26-2012, 01:06 PM #10
Breezy55 Breezy55 is offline
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Default Scared!!

Quote:
Originally Posted by Sam View Post
Pain and fear are a difficult cycle to break. Especially when you don't have answers. Finding a diversion helps some. Whether is coming to the forum, reading or a good show on the tube, anything to get your mind off the pain for a bit. Talking yourself through it may help as well. Its easy to be consumed by pain and fear if you let it. I wish I had something more tangible to offer, but I haven't figured that one out for myself, let alone be able to stop someone else's pain.

I'm in Indiana. Not being raised here, it surprised me when I finally found a pain specialist here. He's great and his staff is nice too. It was only luck that I stumbled upon his clinic. There may be someone in FL. that you just haven't found yet. Don't give up. If you have a good friend or spouse, just venting to them can make a difference. I'm glad you found this forum.

Sam
Sam,I live in Wisconsin,I am so happy that you found a pain specialist!! Keep up the fight,we are all with you!! Breezy55
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