Undiagnosed Symptoms Community
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1440512 tn?1294471633

out of options

For seven months now I have had one sympton occuring after another. Three hospital stays and oh so many dr visits. Here is what has been ruled out  Hiv, Cancer, endoscopy shows nothing wrong, abdominal scans with and without contrast shows inflamation but the endoscopy ruled it as nothing. Here are my symptoms : naseau, vomiting blood, normal vomiting, 90lb weight loss, no bowel movements for four or five days but when i got there is horrible pain not constipation or diareah, a month ago stool tested positive for blood, anemia, significant hair loss, can't keep potassium up leaving me levels of 2.4 (minimum is suppose to be 4.0), reduced pulse and blood pressure, nonstop migraines, left side abdomenal pain as well as lower too, severe dehyration, fatigue, lower back pain, burns to the point of biting pencils in to when urinating, my hypothyroid for some reason isn't leveling with medication. Ive been to two cardiologist, one nuerolgist, and on and on. I just got out of the hospital today. I was told by the surgeon who performed the endoscopy I came as close to death as you can possibly be. Also, Three specialist that was treating me this time told me that the test I need can't be done because with my potassium the way it is I wouldn't make it thru another test. I will not spend the rest of what life I have living in the hospital for potassium iv's. I have no answers and I don't know what kind of dr to even go to now or if they would even risk the procedures. So am I suppose to live my life waiting to die? I'm deperate if anyone has any ideas of what this can be or specialist to try please let me know. I have nothing to lose. I'm not going to go down without a fight. dr's do believe me. All test I have had done confirms something is seriously wrong. like i said anyone have a suggestion or heard of anything like this it would be greatly appreciated. thank you.
18 Responses
1340994 tn?1374193977
Have you been tested for Celiac disease with lab studies?  You didn't say if you had UPPER or lower endoscopy, but Celiac can be hard to test for.  I was really sick from it, and not eating gluten helped me a lot.  My tests didn't come back positive (since I stopped eating gluten before getting tested), but my docs think I have it anyway.  To feel my best, I also had to stop eating nuts/peanuts and dairy, but after 6 months on the gluten-free diet, I'm introducing a little dairy.

The diet is doable now; even many restaurants have a gluten-free menu, but not many fast food places.  

I feel so much better now.  Life is worth living.
1440512 tn?1294471633
Yes I have been tested for celiac but its a negative im on the g diet anyway. They say I do have Cachexia also known as the wasting syndrome but it is always caused but a more severe even terminal illness. I had the upper endoscopy and it only showed a slight inflamation due to vomitting so much. They all want a colonoscopy and other test as well be refuse to do it because I almost didnt make it thru the endoscopy. Nobody will touch me here. I'm on medicaid so I have to stay in state. I have found four out of the top ten internist and hospitals but they are all in nc and im in sc. I can't afford to pay for it myself which leaves me in a hard place. I'm tired of hearing we know you have serious health issues but i know we wont be able to find the answer you need to go to a larger hospital but medicaid wont pay for that either and even if i could pay for it it is advised I would stand a better chance at surviving these test in nc. I get pumped full of potassium for 3 days go to my family dr get blood work called the next day and told to go back in for another round of potassium iv's. I can't live in the hospital and what quality of life would that be. So I'm scared to death sicker than you can imagine and feeling hopeless. Three specialist in the hospital im gonna die without these test but if i dont go to nc im gonna die here if i could even get a dr to risk giving me the test. I was just released for the hospital at 2:30pm est yesterday and I'm already starting to go downhill again. Think I'm crazy but for some reason my pets keep licking me and I have a gf I live with and they don't do that to her. I'm thinking maybe it's the overload of potassium im getting. Lets just hope it stays to licking and not eating me alive lol. Anyways the most important thing is letting you know how greatful i am that you were helpful and took a shot. I'm going to try to start some herbal medications and see if there is any help there. Last shot so what have I got to lose.
1525854 tn?1291571568
Hi I am so sorry to hear what you are going through it really sound aweful, but you know I love that you are willing to fight back and I want you to know that you are not alone God is with you and I hope you get chance and read the book of Job in the bible so you can get see that God is with you,    But what I wanted to recommend  to you was the Moringa drink , go to  moringa documentary , its called the miracle tree, it will nourish your body specially stop you from going to the hospital for potassium because this plant is full of it and other nutrients that your body needs, please give it a try go to www.*******.*********.com  but look at the  moringa documentary first . Please keep me posted  I will be praying for your health and well being  God bless
Avatar universal
All of your symptoms point to malnutrition as a result of malabsorption.

I wonder if you had a false negative for celiac disease.  Please demand another test.

Also - Have you ever been tested for cystic fibrosis?  It's slightly random, but if your issues are arising because you ARE malnourished, and it is from malabsorption - CF is a disease that's often forgotten about that can cause malabsorption.

A small bowel blockage can also cause all of your symptoms - a CT scan, MRI, x-ray, the whole nine yards.  Even a large bowel partial blockage.  

Anything that interferes with absorption in the intestines are going to exacerbate your symptoms.  Please makes sure you are eating.... I know you're throwing up, but TRY to get some in.  Bland food. No raw vegetables. No nuts or roughage. Stay away from lettuce and celery for sure.  No beans.  

The struggles you are having with your potassium are a problem. Can the hospital leave a port in you, and have a home health aid help you set up an infusion at home?  Medicaid SHOULD pay for something like that considering the extent of your issues.  

Eff, Medicaid - save your life and go to the hospitals you know that will be able to test and treat you.   Once you survive, then worry about the bills. :(  
180749 tn?1443595232
You have a lot of tests done. Now help your body to build up the immune system with pranayam.Extra oxygen will get into your blood, and the stomach movement will exercise your organs.Start the pranayam and do it twice a day, and let me know you feel after 9 days.The benefit will be felt gradually, so allow weeks.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Kapalbhati pranayam  -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 20 to 30 minutes twice a day. Children under 15 years – do 5 to 10 minutes twice a day.
Not for pregnant women. Seriously ill people do it gently.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
351246 tn?1379682132
Welcome to the MedHelp forum!
Persistent low potassium can be due to a kidney disorder, IBS, any other inflammatory bowel disorder, leukemia or due to side effect of certain medications.
All these conditions need to be ruled out one by one. Hope this helps. Take care!
1440512 tn?1294471633
hello ladies and gentlemen, I'm back again and still no answers. I just got out of the hospital on Dec 5th. They did a endoscopy and I crashed in the middle of it. Thanks to a good surgeon I was brought back. My last night there three dr's and the surgeon asked me to sit down. Should have known huh. They told me what happened with the endoscopy. The head dr set down beside me and told me I needed to go home and say my final goodbyes and settle my things. My heart has been so damaged after seven months of being sick I wouldn't survive another procedure. What really bites is I will never know what is killing me. I have already emailed the president twice the senator three times and the govenor twice. The first two never responded but the govenor did. It gave me some hope because no dr in south carolina will touch me now. Duke is willing to take me on. My hopes were shot down on the second call from the govenors office they could not provide financial medical aid. I've tried getting many financial assistance everywhere I see they offer it. No reply. Duke is my only shot and in the top 100 of all the hospitals and internist in the world. Hard to absorb your gonna die pat on the leg goodbye. The hospital didn't even call a loved one to be there when they broke the news. Now I did the first night home what the dr's said. I have a dnr, power of attorney, living will and a ems dnr. christmas is also coming early. They never gave me a how long do I have guess. Letters wrote, Cd's for everyone I love, and final wishes completed. I get as much pain meds as I want and 4 naseau meds so i might be able to hold down food. I guess thats suppose to make me comfortable but I cant believe my children will never know what killed their mother. the painkillers don't work anymore and I am on my 5th day of not sleeping because of the pain. I don't know if you will have previous access to my former post but they all talk about my symptoms. I can't pay to go to Duke University Medical. My insurance wont pay. I don't understand where compassion and humanity and what god expects from us went. The only thing I hope to gain by this is that another person doesnt have to die because of what I've been thru. Thank you everyone for trying to help me. Besides my family everyone here actually wanted to help and was concerned.
Avatar universal
I know you said you're already on Medicaid, but EVERY hospital (at least every one I've ever been to) has their own "charity" program or patient assistance program.  So PLEASE check into this - call the hospitals and speak with the finance/credit department.  Obviously, the hospital's program may not cover the doctor fees, but it would cover your actual hospital stay, including testing, procedures, surgeries, etc.

Since you say that Duke will take you, I also suggest that you call them back and ask them what their requirements are for you to be admitted - whether they can do a direct admit or whether your doctor has to basically transfer you from your local hospital to Duke.  Again, ask Duke about the patient assistance thing - it may make a difference as to how they are able to admit you.

Another place to check into regarding getting looked at would be the Mayo Clinic.  You could call them and explain the situation to them and see if a) they think they might be able to help, b) if they do think so, ask about their patient assistance program/s and c) again ask what the procedure would be to be admitted.  Be sure and tell both May and Duke that your doctors have basically sent you home to die, so time is definitely of the essence - sometimes with the bigger hospitals and more specialized ones, it can take a while to be seen, so it's important to really stress that you simply do not have that time to wait.

In the meantime, when they send you home from the hospital, do they send you home with potassium pills or do they just basically cut you off from the potassium IV and send you on your way?  If they're not giving you oral potassium to take at home after being released, I would definitely check into getting that prescribed.  It could possibly not only help you feel better, but also hopefully lengthen the time in between your hospital admits for the IV potassium.  If you're not able to handle the oral potassium, ask them about inserting a PICC line and then, like M_Pounce suggested, ask them about a home health nurse coming to give you the IV potassium at home.  The other good thing about a PICC line is that might possibly be able to give you your pain meds and anti-nausea meds in IV form rather than pills and that might help those to work better also.

One last question - have they ever given you, I believe it's called enteral feedings?  I've had them before, but I don't remember the exact name for them.  They also can be administered through the PICC line, so you don't need an additional IV or port for them.  They should also be able to be given at home, again, probably with the assitance of a home health nurse.  The feedings are usually given over a 12 hour period, so typically given at night.  They could definitely give your body extra nutrition that you're not able to get now becaue of the nausea and vomiting.

I wish you the best of luck and I hope you're able to find some help.  Please keep us posted on how you're doing!
1440512 tn?1294471633
My potassium has increased to a massive dosage in pill form and hospital stays in iv form. Whatever this is is depleting my potassium  so fast they cant replace it. The last hospital stay I felt a little better getting the iv's. However the very next day I was worse than ever. Mayo clinic turned me down. The only ones willing to help me is Duke. To be honest I have contacted every body for financial assistance for medical care. I don't know if I asked Duke but I will do it in case I haven't thank you. Medicaid is suppose to pay for my health care but says im out of visits. 7months of dr's doing thru  the procedure to get more visits has yet to be resolved. It wouldn't matter if they would extend them now.  Medicaid just does not pay for hospital out of state care. I've called all over the state of south carolina and I really am told I am too much of a liability to treat. I have no way to get treatment here. My last hope is Duke and so far nobody has responded to my pleas for financial assistance. That was my last option. You are very helpful and so sweet. I am so tired. 24/7 im in pain. I can get all the painkillers in the world. They even had me on morphine. Nothing is helpful anymore. Five days straight now being in pain and not sleeping is really ripping my body a part. I have fought a good fight but I can't fight anymore. I don't want to upset people.
180749 tn?1443595232
The anulom vilom, I described on Dec 05, 2010, will help you relax and get some sleep.Take this one stage at a time, and you will appreciate the benefit of pranayam.Give it a try - you have not run out of options.
Avatar universal
The enteral feeds are called TPN (Total Parenteral Nutrition) and they thick yellow stuff is developed individually for each patient based on their nutirtional needs.  It's commonly infused slowly over 12 to 24 hours. Lipids are also often administered simultaneously.  Each time a new bag is hung, new tubing needs to be started.

Switching from IV Potassium to oral postassium abruptly will lead to Hypokalemia.  This can eff with just about everything in the body.

There is absolutely no reason the doctors and hospitals cannot initiate an indewelling semi-permanent line for at home TPN and IV Potassium.  You CLEARLY have a malnutrition issue that is endagering your life. Once you have destroyed your ability to ingest oral nutrition, it is nearly impossible to correct the issues fully. But there ARE options to get your body the nutrition it needs.  

All the doctors in the hospitals are treating you for your acute symptoms, but not the chronic symptoms.  None of them have referred you to a doctor you can see weekly (or more often) to help you manage your health?  
1440512 tn?1294471633
For seven months I have been tested for aid Hiv negative, a ca 125 negative, head cat scan showed a 5 mm cyst on the split of my brain but neurologist said it would cause no problems and would not make all the symptoms i have. I was diagnosed with hypothyroid which I don't understand because of the huge weight loss. I asked for an adrenal gland disorder negative. the first dr seemed to only be interested in the thyroid and potassium but just uped my dosages. After five months and now bedridden I went to the dr who owns the practice. I got one test done and that was only because I was in the hospital. I had the endoscopy which showed only a slight inflamation. For the last seven months blood test always come back with a really low potassium levels even before the iv potassium was included. I have taken it upon myself to try to get some help to pay to go to duke university medical. no dr in sc want to touch me because i am too much of a liability. Duke feels sure I can make it thru the procedures. My only hope for a diagnosis. I live in a dr's office. Every week same thing. Now the dr doesn't look me in the face. Instead he opens my medical file without asking writes for painkillers potassium and 4 naseau meds. He closes my file and walks out. Im not going to get help here. I am going to die here and without knowing what it is. If I can figure out a way to pay duke I have a fighting chance. For now the pain is unbearable. The dehydration so bad I consume so much ice chips i could be called an ocean. Ive learned the trick of taking the naseau meds about 20 minutes before I eat. Sometimes it comes up but sometimes it stays down. I forgot. My stool tested positive for blood and I vomit blood. I am on hemocyte and now anemic. CBS the television station wants an interview. I'm reaching out to anyone and everyone. Maybe someone who sees that interview will shine the light on what it is. Thank you so much. I don't want to go the feeding tube deal. Its in my dnr not to use a feeding tube. I guess this is where i make the best of the best. i dont go down without a fight and the good lord knows i am at this very moment still giving one. I just dont know how much longer I can keep it up. good nite and again thank you. It is heart warming that you show compassion. So little of that in this world these days.
Avatar universal
TPN isn't through a feeding tube, it's through an IV.  It goes straight into your blood stream.

Did Duke tell you what they wanted to test for?
Avatar universal
Who cares if Medicaid won't pay?? Your life and children are way more important. Go to duke. Live. Then worry about paying for it. Your kids need you.
1440512 tn?1294471633
Duke wants to test me for everything until there is a answer. Its not about medicaid anymore. As all hospitals if you havent any insurance they want money up front for everything. There in lies the problem. If I could go now I would have been there seven months ago. I am positive that is where I need to be. CBS wants an interview and I have emailed the 700 club. I have done so much pleading for help. In the meantime Its all second by second minute by hour and day by day. That is all I can do. M_Pounce. The TPN is a terrific idea but the problem is no dr or hospital in the state of sc will see me anymore. I know they hang that sign saying you cant be refused. It's all bull. If your too much of a liability they'll take the risk of a lawsuit after I am dead. The dr who is seeing me is pumping me full of pain meds and naseau meds and sending me on my way. He says he signed an out to do no harm. Isn't it harm when you decide to do nothng to save your patient? Sure pain killers and naseau meds give me small comfort but its not going to save my life. I pray that nobody else has to go thru this and in my battle to get things changed if my death can make sure that another person doesn't have to go thru this than my death will have meaning. I could send you each and every source I have tried to utilize and you would see i am out of options at this point. Thank you both for your concern and help. Unfortunately I have to deal with reality. I am getting worse. The enevitable is staring me in the face. Take care all.
Avatar universal
Forgive me, one of my symptoms right now is effecting short term memory so if I dont make complete sense. My heart is with you, Ive had constant and sometimes just plain odd symptoms for about ten months straigt. I could just as easily been listening to you tell my story as you told yours. ***In the middle of writing you, I had to leave and ended up at the er again. ***Just got home, and wanted to finish this to you. You mention medicaid, might I ask what state you are in? I am in Florida. I know this has got to be so hard for you and if you ever want to chat with someone who can relate, in between memory lapses :) feel free to contact me. I hope you having a better day today and I definately send good wishes and love to you. Daisy
1440512 tn?1294471633
You are such a sweet heart. The same offer applies to you as well. I live in South Carolina. You get 12 dr visits a month but per dr's request these visits can be extended if a dr writes to medicaid with a request. For many months two dr's have claimed they have done so. They have let this go on for so long damage has been done. I've called other hospitals in this state. Ive called other hospitals in this state. I am refused on the grounds I am too much of a liability on them. Duke is a terrific hospital and the dr's and hospital believe that they can get the procedures done and me make it out alive. They believe I will get my diagnosis. I am sorry you are going thru what you are. It seems the lack of compassion and humanity is few and far between these days. I won't throw God in your face but if you do believe in him try to understand as I do there is a purpose for this. For me I believe it is to help others from ever having to suffer like you and I have. I have emailed the President of the United States twice, My Govenor twice, My Senator three times, The 700 Club once, and CBS wants to interview me about this. I'm not going down without a fight. I know the last thing you want to hear is think positive. If I hear that again I'm going to run from the room screaming and pulling my hair out. Unless your in our situation you would know thinking positive at this point has gotten us nowhere. The only positive I have is that I am going to die and there isn't anything I can do about it than I've already tried. My good days are becoming less but I push thru because I want to have made good memories for my loved ones before my time comes. Some may say I'm giving up. That is far from the case. It is called acceptance. When your worst times come, find your favorite music put it on lay back close your eyes and just listen. It might not work for you but for me it takes me away from the pain and the insanity my life has become. Your in my thoughts. Now get your behind in bed. It's okay when it's bad to be comfortable and rest.
Avatar universal
Thank you for your caring response. I to have medicaid, and was fired by my doc friday. And the only other doc in my area is in the same clinic as the doc that fired me. I am a passionate person(very). My son has mental issues and ive been very proactive in educating myself and others about issues relate to similair mental heath areas. I feel it is my responsibility and its what drives me. I would like to help you in any way. You are right. Others should not have to deal with these problems when all they need is competant compassionate medical care. If I can help with letters, phone calls anything, you count me in. I am serious. This has to be dealt with. Be warned America: I am a stay at home mom with lots of time on my hands and big mouth. I will be heard. Take care, Daisy
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