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I need help so desperately

Sep 15, 2007 - 4 comments

Nickname:whspurr222
Age:42
Gender:Female
Location:Covington - VA
Interests (tags):Medical conditions, seizure disorder, herniated disc repai, nausea vomiting, unexplained pain beh, behind eyes, would like to get be, get better
A little about me:I am a 42 yr old female with lots of health problems that have been hard to diagnose and some are unusual for my age..my life consists of taking pills, undergoing medical tests and procedures trying to find the root of the problems, recently its been nausea and vomiting for 18 months.

Additionally, I have been diagnosed with Interstitial cystitis and it's about as painful as anything I've ever had..i haven't had much luck with taking the Elmiron or the urised, but I do use it and I suppose it's better than nothing.

I also have some kind of severe itching only on my shoulders and forearms..I finally got a diagnosos of Brachioradial Pruritis after ten years and after scarring my arms from scratching. It seems that all of my problems are related to an autoimmune disorder thats why i'm wondering if the spleen didn't help more than ppl actually realize. i was told that the liver would make up for the spleen but with all the drugs that I have to take, I think the liver has a tough job just processing them..but i don't know that's why I'm hoping there's some doctor out there that might know .

In the midst of all of these different diseases that I've had, I also ended up with Malignant Melanoma which I was treated for at Duke university while it was in the earlier stage so surgery alone cured it. From whaat I read, Melanoma can also come from a weakened immune system. Thats why I'm wondering if some of my problems are the result of not having the spleen to do it's job. I was perfectly healthy until I lost it in 1993.

It took a long time to find the problem b/c my blood work was always normal..finally the hida scan said my gallbladder was working zero % so they took it out, but I'm still vomiting and still nauseated 24/7..my life is pretty much nonexistent at this point..i can't drive, barely eat, can't clean my own home or cook..all I do is sit in the chair with something nearby in case I get sick..

I need to find out why and to stop this..now the dr.'s are saying it maybe the spinchter of oddi or the duct..I am just so weak and tired of all this..

I also have a seizure disorder and when I try to go to sleep it feels as though I'm having a different kind of seizure..numbness and severe pain in my head, disoriented to whether I'm standing or sitting, can't speak or communicate in any way and I'm afraid to go to sleep b/c it's really scary and once it's happening it doesn't stop until i'm fully conscioius,

I also have severe dysphagia (diagnosed through swallowing tests) I get choked on food occassionaly and have to swallow several times to get it down. I was told that I have the swallowing abilities of a 75-80 yr old..what went wrong..what happened? I don't know, but I do know that something's severely wrong and I don't know what to do and I'm tired of trying to find out.

I feel as though no one understands the severity of what this has done to my life and I feel like giving up..I'm not an attention seeker..I just want my life back. So to summarize: I need to fix the nausea/vomiting, herniated disc, and the seizure/jerking/unknown problem and I want to be able to go out and enjoy life at least a 1/4 of what I used to do.

One more thing..I had surgery for a herniated disc and now it's hurthing more then it ever did and it is herniated once again according to the dr. or maybe its a different one (but from what I recall it is the same one that he already did the surgery on previoiusly... I don't know for sure but I think that's what he said) but the doctor won't do surgery on it and b/c I'm his patient no one else will help me either. I'm on roxicodone 15mg 4 times a day, fentanyl patch 50 mcg every 3 days, and it doesn't even help sometimes b/c I get the horrific nerve pain..I need another surgery but no one will do it because of him so I'm stuck on all these pills!!!  

Does anyone know anyone out there that may be able to help me..I'm willing to travel to a special clinic..I have health insurance and I also carry medicare on myself..I can pay for the treatment..I just can't find anyone to help. I have 2 children who need me and I'd like to go back to being at least a semi-normal human being..lol.any suggestions would be great!

Well this is not a little about me as you can see..it's a lot and Ive just touched the tip of the iceberg so if there are any geniuses out there that have any advice then I'm open to just about anything at this point. If you've gotten this far then thank you for even reading this. I spend the last hours trying to put all of my problems in words in hopes that someone may know which avenue I can take from here, if any. Thanks so much!


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631435 tn?1222372573
by jillness, Sep 25, 2008
god i asked a random question, and this showed up in my search.. please read my history and you will see we have much in common! at least you have children, once i started getting all my problems dating and career came to an end, and now it seems i will never meet anyone and have kids. im so sick all the time. i have no sex drive. no desire to leave the house. my add is so bad that i often forget important appts w friends and drs or totally lose track of time because i fall into a seizure. noone trusts me, evryone thinks i am a grug addict not epileptic. i have lost everything in my life, and now im dead broke and keep getting denied for medicare and disability they say because of my age? back to you.... i am wondering what med s you take. i have had all your symptoms and they were allergies to meds i was on, i always get the most random fine print side effect from prescription meds. all seizure pills that are effective make me sick in ways that sound like your symptoms, anti depressents , anti anxiety, and birth control hormonal kinds all make me gain about 30 lbs a month yet i stop eatng, the fine print calls this side effect anorexia!! what a sick joke. o cant stop having seizures, my add keeps getting worse, this scar on my arm attracts attention from everyone, as if my narcolepsy, seizures, and wandering eye did not already turn heads. the one thing i have always been blessed with was my looks. i have good self confidence. i have no eating or image disorders. since i got this 7 inch scar on my forearm , I am so self concious about how i look. i feel like a monster. i dont look people in the eye, because if im wearing short sleeves the moment i make eye contact with any man or woman "woah what happened to your arm", it looks like i just had surgery not 7 months ago. i have tried about every scar cream out there and nothing makes this thing lose its shape, thickness, or color. my plastic surgeon was paid 200 thousand dollars by my health insurance for his treatment of my arm. It looks like i  had a piece of glass removed from mhy arm in the er by a resident surgeon, the guy who did the operation was an award winning top rated specialist, i guess all the more reason to sue for malpractice.... any advice for me? at least maybe its nice to know we are not alone in our pain.... best of luck, and again tell me your meds and maybe i can help..

Avatar universal
by shawanna24, Dec 10, 2008
someone please help me i'm having seizures an don't know why doctor already gave me a six hour eeg video an it don't show anything of why i am having seeizures can someone give me a answer

709777 tn?1265916006
by Blujynx, Dec 13, 2008
have you been tested for allergies and or celiac disease? I understand celiac disease can cause immune problems leading to bigger issues.....my sister had grand mal siezures beginning when she was about four or so....was put on phenobarbitol etc.....unexplained cause....my mother was constantly taking her from one type of doctor to the next.....finally she decided to go the "alternative" route.....metal and toxicity testing and allergies....my sister eventually started having eating difficulties ....nausea, vomiting in addition to headaches, pain..the list went on and on......tests revealed that she had severe allergies to peanuts, legumes, soy, wheat and colitis.....and there were some toxicity/metal issues as well......may seem like a weird route to take....for such a sever array of symptoms...but you never know til ya check it out...can't hurt i guess.....meds also have severe side effects and results.....just trying to help......best of luck

Avatar universal
by Franidodson, Apr 15, 2010
Did you get an answer yet?  My one question would be, did you have flu shots, H1N1 and regular flu within 2 weeks of each other shortly before the onset of the seizures?

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