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2nd time still undiagnosed, and just getting more frusterated..

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Old 01-06-2003, 03:48 PM   #1
Join Date: Aug 2002
Posts: 50
NugIsHere HB User
Exclamation 2nd time still undiagnosed, and just getting more frusterated..

First of all, I'm 17 years old, I've been sick since I was 13, infact, on January 8th, it will be 4 years. It all started on Dec. 18th of 98.. i got cold.. no big deal right? Until the 26th, it was just cold symptoms,then the 26th i was cold, and shakey, that night i slept on the floor cuz i couldnt get comfortable. The 28th, we went to the doctor.. she looked down my throat and said i had bronchitis, without doing a throat culture or anything. I got a shot, and antibiotics. For the next 3 weeks, still had the same symptoms.. the first week of January, i came home everyday from shool, cause i was either dizzy, lightheaded, or had headaches. Then the worst day of my life came.. January 8th, 1999. I was walking in the mall with my mom, and my left knee started to hurt. We went to the doctors, she sent us to get a blood test, and x-rays, which later came back negative. A week later, I was in the ER, cause my body was throbbing, which i thought was the worst feeling ever, boy was i wrong! So 4 years later.. I have constant pain in both legs, 24/7, it never goes away. Its from my waist down to my ankles, my feet dont hurt though. Every couple months, the pain gets worse, and last for 2-3 months then goes back to the normal pain. Well, January 25th, 2002, i got worse pain, and it hasnt gone back yet. My whole body is hypersensitive, my legs to the touch of a kleenex. When people hug me, they know not to do it too tight, cause it will hurt. Ive been to over 50 doctors, had 22 blood tests, 2 EMG tests, a bone scan and 6 MRIs, right now im going to 2 of the best doctors in southern california. One is an MS specialist and ones a Infectious Disease Doctor. The ID doctor has over 5000 active patients, in over 13 different states, and they both pretty much told me they dont know what else to do. Theyre not so much trying to find a diagnosis, but theyre trying to treat my symptoms..since september, ive been on, Carbatrol, Tegretol, Zonegran, Lamictal, Nortriptyline, Lexapro, and Sinequan. Some i had to stop cause of side effects, but none worked. Like I said, I'm 17, and everyone says Im every mature for my age. Everyone thinks im so tough, but inside, i'm so scared, its unbelievable... some nights ill just cry myself to sleep cause the only relief of pain i have is pain meds and at my age, or any age, i dont want to have to take pain meds to feel a little temorary relief. I just said something about pain meds and my age and i get so mad when other people do that! Pain doesnt have an age. Next Friday I go to another new dr.. shes at the pain center.. i think its just alternatives insead of pain meds... im not willing to try biofeedback, i just dont believe in it. After that dr.. We're going to the Mayo Clinic. We're going to the one in Arizona. I really think this all started with the cold or whatever it was i had.. it just kinda led into it. But, who knows? If youve heard of something simalur, please, let me know. Thanks.


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Old 01-06-2003, 07:47 PM   #2
Join Date: Nov 2002
Location: USA
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Anonymity HB User

I haven't heard of anything similar; I'm sorry that I can't offer any diagnostic suggestions. What I can tell you is that Mayo Clinic is the best. They have helped my fiance and I when we had become desperate, and I hope that they can help you as well. That said, I would try to keep an open mind about alternative therapies such as biofeedback. Whether you believe in it or not, if it could somehow help alleviate the terrible pain you're in, it would be worth trying. Good luck.

Old 01-06-2003, 08:46 PM   #3
Join Date: Jan 2003
Location: USA
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golfingrany HB User

You poor thing I hope you find an answer at the Mayo Clinic. Did they check your thyroid?? Have you been checked for Lupus??

Old 01-07-2003, 07:14 AM   #4
Join Date: May 2002
Posts: 514
Lady^ HB User

I'm sure they've tested you for nearly everything....but did they test for Lymes Disease?

I'm so sorry you're going through this....I hope that you find some answers, or at least some relief, soon.

Old 01-07-2003, 08:06 AM   #5
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Sarah68 HB User

Did the infectious disease guy run blood tests and did you test positive for any infectious disease?

Have you had blood tests done that showed up a raised white cell count and sed rate? If so, it is always possible that you have a form of juvenille arthritis that comes on after a viral illness of the kind that you had. Could also be Lupus, unless you have already tested negative for this. However, it is possible also that if your docs cannot diagnose anything concrete that you have post viral fatigue commonly known as ME. This can cause all the symptoms that you have described and can also last for several years.

I would also ask you to be open minded about alternative therapies as they can be very helpful. The therapies that I am think of particularly are homeopathy, herbal medicine and acupuncture, which can be particularly helpful for control of joint pain.

Old 01-07-2003, 01:47 PM   #6
Join Date: Aug 2002
Posts: 50
NugIsHere HB User

I have tried biofeedback, that's pretty much the reason why I don't believe in it. It just seems fake to me, and I dont understand how breathing or thinking about something else is going to make your pain go away, if you have pain, it's there for a reason, thats what i think at least.

Cute name! Sounds like my grandma! Anyways, No, i dont think they have checked anything for thyroid, I'll be sure to mention that to my mom though. I have been checked for Lupas, I know there is no blood test to positivly say whether i have it or not, but doctor have checked me for it.

Youre right, I have been tested for pretty much everthing. I remember, i think 2 years ago, I was sitting with my mom, crying cause its just so difficult to comprehend, cause you always think doctors are gunna be there to help you and when they cant, its the worst. Anyways, i said 'isnt there just a blood test to test for everything?' lol. I have been tested for Lyme disease. There are only so many labs that test further with it. So, we have had the Infectious Disease Doctor test for it and sent it to the special lab. It did come back negative. He said usually some of the things are elevated, but none of mine were. I think there is a reason for everything, even if you don't get to understand the reason.

I am very open minded, and I would love to get off pains med, but i shouldnt feel bad if i need to take them. I have tried homeopathy, herbal meds, and acupunture.. In november of 99, i was on 210 pills a week, and after a couple months of that, i was just like ok im not taking anymore pills, and when i stopped taking all the pills, i felt better. I'm just not open to biofeedback, its too fake for me.

Thank you all so much for taking the time to read my post and write and offer your help!


Old 01-08-2003, 09:58 AM   #7
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Join Date: Nov 2002
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winesnob HB User

I'm no expert, and you probably have checked this out a long time ago, but have you considered a diagnosis of fibromyalgia and/or chronic fatigue syndrome? Neither of these things has a "definitive diagnosis", meaning that no specific test will confirm or deny them. But from what you describe, you most definitely could fit the description of either or both diseases. I know several people that have had success in being treated w/ anti depressants for these conditions. It may take some time to find the right one, and none of them work quickly, but sounds like it might be something you should consider, if you haven't already. You should not have to live like you are at 17 years old. My heart goes out to you.

Old 01-09-2003, 04:05 PM   #8
Join Date: Dec 2002
Location: Nashua, NH
Posts: 972
Merrida HB User

Why don't you believe in biofeedback?

Biofeedback is not about trying to think of something else, it's about concentrating precisely on what IS going on.

If you have any doubts about the power of the mind, try these two things:

1) think about someone scratching their finger nails along a chalk board! Imagine the sound of the nails being scraped, slowly, running down the chalkboard, little by little, dragging out, that high pitched piercing sound!

2) picture a bright yellow lemon, and imagine slicing it in half...holding a lemon half in your hand, imagine tilting your head back, and squeezing the lemon half into your mouth, the lemon juice dripping onto your tongue, some of it spraying into the back of your throat,...

If you read those two posts and even began to "react" to them, if you cringed thinking about nails across a chalk board, or began to salivate thinking about a lemon squirting onto your tongue,... that is biofeedback. That is Pavlovian. And it works in any direction.

You train your body how to respond to given situations, and at some point it becomes a subconscious reaction. For some people, it can be afraid of heights, thinking about being on top of the empire state building can cause them to sweat without them even being near the building,...

What does this have to do with you? Biofeedback teaches you how to use the power of your mind to redirect emotions and responses so that you are in charge and can alter how your body behaves on a physiological level. It already occurs, whether you want it to or not, if you learn to harness it you can control it, redirect it, and thus react differently.

It is very real, but you've also got to want it to happen, you've got to practice, you've got to try and not give up right away. People expect miracles and want instant gratification, we've become a culture dependent on pills and surgery when that does not always have to happen.

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