A Serious Illness Involving My Sister

[donk4life 34]

I've debated whether or not I want to post this on this forum, but I think it's been so long and so confusing that i'm desperate for any diagnosis.. Doctors are encouraging us to ask around or look on the internet.. My parents have even told me to go on here ask, so you can see how desperate we are here..I know you all aren't doctors, but i'm hoping if i tell this story someone on here will have had a past experience with it, whether it be with their relatives or themselves.Ok, heres the story..About a month ago, my sister supposedly develops a sinus infection, she goes to the doctors and receives medication for it, it's called GUAFINEX...A week after that she starts to have severe anxiety attacks, VERY high blood pressure and pulse, and mind you my sister has always had low blood pressure, so this is a weird occurence... My family takes her to the emergency room multiple times, but doctors can not find anything wrong with her.. It gets much worse after this... She starts to develop weird psychological problems.. She tells us that she can't feel anything (i don't know whether to intrepet this as emotional or physical, however she did seriously injure her finger and had no reaction).. Also, she can not sleep.. Literally, she stayed awake for a week, that is no joke.. Finally, a psychiatrist tells us that we have to committ her... Fine.. Get her better, we don't care, maybe she did have a mental breakdown, she runs a store on ebay and works non-stop, so it's possible.After she is sent to the hospital, psychs try to work her and figure out what is going on, nothing comes up.. Finally on the last sunday of april, she has a major seizure in her bedroom, and has to be taken to ICU. Doctors finally did a spinal tap on her and it revealed that she did indeed have a blood infection, so they ruled this some type of meningitis.. She stays in the hospital's ICU continuing to have seizures, so a neurologist decides to move her to a bigger hospital with more doctors. After they shoot her up full of antibiotics, she goes into a coma-like state, she won't react to drugs, and is still having seizures.. However, doctors say the antibiotics should make her come around, in which they do.. But since this point she has woken up, which has been about week and a half ago, she has not made any progress. Doctors tell us that her seizures have stopped, but she has "fake" seizures, they look like seizures to me, but doctors says the brain waves don't add up to be seizures.... She is also not talking, it almost look like she tries to say words, but they just can't come out... She sort of responds to what we say, if we say squeeze our hand, she does, but other than that she's almost like a vegetable, it's very disturbing!! Doctors are very confused right now, they aren't even certain she had meningitis, but they think there should be at least some progressEverybody that we know is trying to figure this out.. Recently, my aunt has told us she might have lyme disease, because about 2 months ago she did have the rings that develop when you get lyme disease, but the doctors said they didn't find any thing like that on the blood tests.. They are going to do another spinal tap again today..This is a very hard time for my family.. It would make us all feel better if we could just figure out what she had...If anyone of you on here have ever seen this before, please please reply to this, her life isn't in danger, but she's not getting any better!!Thank You,Ian

[LongLiveYorke 38]

I mean, I'm certainly not a doctor, and I don't think that anyone here will be better able to diagnose her than a doctor. Be sure you are giving her the best care possible, and if you seem weary of one doctor's opinion, by all means seek a second opinion. Doctors are well educated, but they're not gods and they're not infallible. As to the personal issue, my heart and thoughts go out to your sister and I hope for the swift return of her health.

[donk4life 34]

I mean, I'm certainly not a doctor, and I don't think that anyone here will be better able to diagnose her than a doctor. Be sure you are giving her the best care possible, and if you seem weary of one doctor's opinion, by all means seek a second opinion. Doctors are well educated, but they're not gods and they're not infallible. As to the personal issue, my heart and thoughts go out to your sister and I hope for the swift return of her health.

First, thank you for the response and wishes, very much appreciatedI guess diagonsis was the wrong word... Help would be the best word here..Here's another interesting fact.. she has about 7 doctors working on right now, so there are second opinions everywhere.. Are they the best doctors? By all means no.. but all are educated, and I do trust them to give her care..it's just a weird situation that exists..

[aadams_22 3]

same as yorke, my heart goes out to your sister and you & your familyI also suggest that you ask around for more dr's opinionsI have no clue as to where you live, but maybe taking her to another city would help

[silkyjonson 1]

I wish the best for your sister and your family, this sounds like a horrible ordeal for all of you to go through and I hope she gets better. Im not an MD but I do have a doctorate in pharmacy, and the best advice I can give you is to look for more opinions and look for specialists, the more people see her it becomes much more likely someone will spot something in her charts or recognize something that is extremely hard to find. Guafinax has a serious side effect of causing a stroke and bleeding into the brain, and is more likely in women. I hope this is not the case in your sister but I'm sure the doctors have looked at that, but It would'nt hurt asking them about it. Also it causes increased BP which you stated so if I was looking at this patient that would be my first guess. Also was she taken off the drug or continued on it after she had increased BP?MD's are not perfect and there is such a wide body of literature out there and no one can be abreast of everything. As you stated she has some form of infection of the Meninges which is dangerous but antibiotics are the best route but it may take time to get the right drug to cover the infection. She may be seeing effects not due to the infection but because of a byproduct of some bacteria which could let up over time. It could be an akward reaction to a medication which can happen and is severe at times, but can be treatable and I am sure this has been looked at. So I dont think there is anything I could say to make you feel better, but hopefully you have some good infectious disease doctors working on her and they can get to the bottom of what she has.

[7upncider 0]

I wish the best for your sister and your family, this sounds like a horrible ordeal for all of you to go through and I hope she gets better. Im not an MD but I do have a doctorate in pharmacy, and the best advice I can give you is to look for more opinions and look for specialists, the more people see her it becomes much more likely someone will spot something in her charts or recognize something that is extremely hard to find. Guafinax has a serious side effect of causing a stroke and bleeding into the brain, and is more likely in women. I hope this is not the case in your sister but I'm sure the doctors have looked at that, but It would'nt hurt asking them about it. Also it causes increased BP which you stated so if I was looking at this patient that would be my first guess. Also was she taken off the drug or continued on it after she had increased BP?MD's are not perfect and there is such a wide body of literature out there and no one can be abreast of everything. As you stated she has some form of infection of the Meninges which is dangerous but antibiotics are the best route but it may take time to get the right drug to cover the infection. She may be seeing effects not due to the infection but because of a byproduct of some bacteria which could let up over time. It could be an akward reaction to a medication which can happen and is severe at times, but can be treatable and I am sure this has been looked at. So I dont think there is anything I could say to make you feel better, but hopefully you have some good infectious disease doctors working on her and they can get to the bottom of what she has.

I was gonna say that you prolly need to have the meds check with the doctors and go to a lawyer with medical background. Believe it or not a good medical lawyer will help you out alot. My dad had a medical condition related to a med he took several years ago. The doctors kept saying they didnt know what the problem was. So by recondmendation from another doctor we went to a lawyer who recommended us to a medical lawyer. He knew of the drug that was being used and he went straight to the hospital and pretty much got my dad straightened out. Doctors work with doctors to prevent lawsuits from happening. So if your sister had a problem with the meds then this could be the problem your having. It wouldnt hurt to check into it trust me we would have never done it if the young doctor wouldnt have told us too.My prayers are with you and I hope all works out for yea.

[silkyjonson 1]

I was gonna say that you prolly need to have the meds check with the doctors and go to a lawyer with medical background. Believe it or not a good medical lawyer will help you out alot. My dad had a medical condition related to a med he took several years ago. The doctors kept saying they didnt know what the problem was. So by recondmendation from another doctor we went to a lawyer who recommended us to a medical lawyer. He knew of the drug that was being used and he went straight to the hospital and pretty much got my dad straightened out. Doctors work with doctors to prevent lawsuits from happening. So if your sister had a problem with the meds then this could be the problem your having. It wouldnt hurt to check into it trust me we would have never done it if the young doctor wouldnt have told us too.My prayers are with you and I hope all works out for yea.

The first thing the doctors and pharmacists will do is check the med list for any possible drug causes.

[scram 1]

The diagnosis process is the hardest part when you're dealing with an obscure or unusual illness. When I was a baby, I had this blood disorder called Idiopathic Thrombocytopenic Purpura.After being told by two different doctors that I had Lukemia, my dad (who just refused to accept that I had Lukemia) finally said f'it and brought little baby me to the Mayo clinic in Rochester, MN where the ITP disorder was isolated like a snap (they really are amazing out there at the Mayo)The key to the whole thing was repeating the process until my parents knew what was going on for 100% sure, as a matter of fact. No hypothesis or theories or conjecture by dbags in white coats. The family wanted to know what was going on and they weren't going to stop until they found out for sure. Once they found out, we proceeded with treatment and a few blood transfusions later, baby me was well again.Seriously. If doctor #1 can't tell you for sure, then go to doctor #2 and prepare to go to doctor #100 until you figure out what's up. Never, ever accept the word of doctors as being the end-all gospel. If there's one thing I've learned in this life, it's to always, always question the opinions of "experts" no matter how qualified they appear to be.

[chrozzo 19]

I have cystic fibrosis, arthritis and crohns disease. I know what its like to have a new symptom flare up and have to go through numerous tests to try and determine the reaction and cause. All i can offer is that you be with your sister as much as possible. I spend a lot of time with ym family and I think that I am just that much better due to our close relationship. It really does make a difference.I hope you find out the cause and that a swift treatment is available.

[digitalmonkey 929]

When I was a baby, I had this blood disorder called Idiopathic Thrombocytopenic Purpura...

My son had ITP a few months ago. They treated him with an IV of gamma globulin and it seems to have disappeared. He has to go for monthly blood work for another 6 months or so.

[scram 1]

My son had ITP a few months ago. They treated him with an IV of gamma globulin and it seems to have disappeared. He has to go for monthly blood work for another 6 months or so.

Fortunately, it goes away after a while (in most all cases) but it is very, very scary when it's happening. I can't imagine what I'd be going through if my kid just started bleeding for no reason and wouldn't stop. Being an idiopathic disorder, there's no telling how long it will hang around for, but mine went away after the initial bout, so there's hope that it will just be a passing thing.The upside is that ITP is actually a byproduct of a very robust immune system. Our doctors called it the "healthiest baby disorder".

[hblask 1]

My son had ITP a few months ago. They treated him with an IV of gamma globulin and it seems to have disappeared. He has to go for monthly blood work for another 6 months or so.

Wow, I didn't realize this was so common. My mom had it a couple years ago, and nobody we knew had ever heard of it.Anyway, to OP, I've got nothing to add except best wishes. My two youngest babies both spent months in the hospital, and there's nothing worse than waiting for family members to get better.

[sandwedge 30]

Sorry to hear the bad news. I wish I could help, but all I can offer is good thoughts and prayers. Good luck, and please keep us informed.

[donk4life 34]

I would like to thank you all for your kind replies, it really means alot to me. The docs are going to some more blood tests today and I think a spinal tap as well.. If they don't reveal anything here, I think my parents are considering a private hospital/ a better hospital... It would just feel so much better if we could find out what she has.. The MRI's reveal no brain damage, but she hasn't said a word in a week and a half, perhaps i'm just too impatient and it will take time.. Once again thank you..

[CBass1724 1]

This sounds like the kind of stuff that happens on House. Very odd situation and I wish you and your family the best. They will figure it out.

[ratwastard 0]

guaifinex is one of the safer drugs on the market, so safe it is both prescription and OTC.lyme disease --- my friend had it for 15 years before a good doctor found it just recently. he was tested for it at one of the best hospitals in the country 7 years prior yet these f'ing idiots didn't detect it. every day these fools misdiagnose thousands.hopefully this infection hasn't permantly triggered a lifelong illness. many times a major stressor is what triggers these things. it's why among IDENTICAL twins there is only a ~50% chance of the twin contracting schizophrenia or bipolar when the other gets it despite the same genes.

[chrozzo 19]

guaifinex is one of the safer drugs on the market, so safe it is both prescription and OTC.lyme disease --- my friend had it for 15 years before a good doctor found it just recently. he was tested for it at one of the best hospitals in the country 7 years prior yet these f'ing idiots didn't detect it. every day these fools misdiagnose thousands.hopefully this infection hasn't permantly triggered a lifelong illness. many times a major stressor is what triggers these things. it's why among IDENTICAL twins there is only a ~50% chance of the twin contracting schizophrenia or bipolar when the other gets it despite the same genes.

way to soothe his fears champ

[Zach6668 513]

I wish your sister all the best, and best wishes to your family.However, you only need two words here.Dr. House. He'll get her diagnosed good.

[Dratj 0]

I've debated whether or not I want to post this on this forum, but I think it's been so long and so confusing that i'm desperate for any diagnosis.. Doctors are encouraging us to ask around or look on the internet.. My parents have even told me to go on here ask, so you can see how desperate we are here..I know you all aren't doctors, but i'm hoping if i tell this story someone on here will have had a past experience with it, whether it be with their relatives or themselves.Ok, heres the story..About a month ago, my sister supposedly develops a sinus infection, she goes to the doctors and receives medication for it, it's called GUAFINEX...A week after that she starts to have severe anxiety attacks, VERY high blood pressure and pulse, and mind you my sister has always had low blood pressure, so this is a weird occurence... My family takes her to the emergency room multiple times, but doctors can not find anything wrong with her.. It gets much worse after this... She starts to develop weird psychological problems.. She tells us that she can't feel anything (i don't know whether to intrepet this as emotional or physical, however she did seriously injure her finger and had no reaction).. Also, she can not sleep.. Literally, she stayed awake for a week, that is no joke.. Finally, a psychiatrist tells us that we have to committ her... Fine.. Get her better, we don't care, maybe she did have a mental breakdown, she runs a store on ebay and works non-stop, so it's possible.After she is sent to the hospital, psychs try to work her and figure out what is going on, nothing comes up.. Finally on the last sunday of april, she has a major seizure in her bedroom, and has to be taken to ICU. Doctors finally did a spinal tap on her and it revealed that she did indeed have a blood infection, so they ruled this some type of meningitis.. She stays in the hospital's ICU continuing to have seizures, so a neurologist decides to move her to a bigger hospital with more doctors. After they shoot her up full of antibiotics, she goes into a coma-like state, she won't react to drugs, and is still having seizures.. However, doctors say the antibiotics should make her come around, in which they do.. But since this point she has woken up, which has been about week and a half ago, she has not made any progress. Doctors tell us that her seizures have stopped, but she has "fake" seizures, they look like seizures to me, but doctors says the brain waves don't add up to be seizures.... She is also not talking, it almost look like she tries to say words, but they just can't come out... She sort of responds to what we say, if we say squeeze our hand, she does, but other than that she's almost like a vegetable, it's very disturbing!! Doctors are very confused right now, they aren't even certain she had meningitis, but they think there should be at least some progressEverybody that we know is trying to figure this out.. Recently, my aunt has told us she might have lyme disease, because about 2 months ago she did have the rings that develop when you get lyme disease, but the doctors said they didn't find any thing like that on the blood tests.. They are going to do another spinal tap again today..This is a very hard time for my family.. It would make us all feel better if we could just figure out what she had...If anyone of you on here have ever seen this before, please please reply to this, her life isn't in danger, but she's not getting any better!!Thank You,Ian

My condolencesDifferential Diagnosisheavy metal poisoninginfectionautoimmune disorder

[donk4life 34]

way to soothe his fears champ

Well, he's nothing compared to what a doctor said yesterday..The dumb *** told my mom that she could very well be handicapped for the rest of her life, or she could snap out of in a week.. The problem was she sounded so cruel when she said it.. My mom broke down and started crying and I think some of the other doctors bitched her out for saying that..However, there was progress yesterday.. She finally said a few words, she wasn't having shakes anymore, and the docs are deciding to remove a feed tube that goes directly into her stomach, and instead make an incision into her stomach and put it in there.. It sounds harsh but having a tube shoved in your nose and down your throat isn't comfortable either..The docs are pretty sure she just had a horrible case of viral meningitis, the worst kind you can have. All other tests came back negative, and it would explain why the antibiotics aren't working too well, viruses can't be treated with antibiotics.Anyways, I just wanted to give you all an update.. and thanks for the replies..-Ian

[chrozzo 19]

However, there was progress yesterday.. She finally said a few words, she wasn't having shakes anymore, and the docs are deciding to remove a feed tube that goes directly into her stomach, and instead make an incision into her stomach and put it in there.. It sounds harsh but having a tube shoved in your nose and down your throat isn't comfortable either..

I had a G-Tube (gastroenteral tube) placed a couple years ago. It wasn't that bad for te most part, but for me it was different. I have very bad malabsorption so the site would not heal. I would change the dressings 3 times a day normally. Oftentimes right when I was eating I would have the food come right out in whole peices. Kinda cool at first, but it def got old. The cool thing was that could get drunk without even swallowing anything (yes i tried it). Oh, and I was the only one at my school who has stuck their own finger in his stomach.Anyways, im sure it will go through fine with her.

[7upncider 0]

Hows your sister doing? Our prayers are with you and your family.

[7upncider 0]

Hows your sister doing? Our prayers are with you and your family.

[donk4life 34]

well we didn't visit her yesterday, and the nurses didn't call us so i assume she's doing the same.. my parents are getting ready to go visit.

[donk4life 34]

My parents just got back from visiting her today... And it seems as though she's regressed... She went back to her vegetative state with her mouth open not responding to anything.. All the doctors say is that she's just going to have to snap out of this, this could be a lifetime illness, or it could clear up in a week, none of the tests are revealing brain damage, so that's a plus, but today was definetely a bad day for her, I only hope it lasts for a day..-Ian