Discussions By Condition: I cannot get a diagnosis.

Please help-very urgent!!!

Posted In: I cannot get a diagnosis. 36 Replies
  • Posted By: angelpie545
  • March 13, 2008
  • 08:29 AM

Does anyone know of, in their experience, ANY disease that presents with the following symptoms?

It started with an intolerance to alcohol. Then, I had a lump in the throat and a voice change, with ears ringing and pressure in the ears. Then, I started having neurological symptoms: confusion, personality changes, fear of being alone/panic attacks, memory loss, inability to process complicated bits of information, and seeing spots and bright lights.

Most recently, I stopped tolerating dairy and gluten, so have eliminated that from my diet. Then, I developed this pain in my stomach, right above my heart, feels like a fist is present there, like someone is pressing right into my stomach. My abdominal muscles are constantly twitching and contracting, and because of the pressure, I constantly feel like I'm going to faint.

Next item-which is the item of most concern. I have stopped tolerating all medication-even antibiotics. The slightest bit affects me horribly, and everything that I take, I have the same reaction: horrible stomachache followed by a spacey feeling, then everyone's voices sound far away and I feel very dizzy and get out of breath like I'm going to faint, then I start shaking and my arms and legs feel "bloated" kind of like how they feel when a blood pressure cuff is on. They sting like they are "too filled" with blood and have these sharp stabbing pains.

I know this doesn't make any sense, and I am in tears as I am writing this, but I've had it up to here! No doctor is taking me seriously, and I'm almost bed-ridden now. My body cannot tolerate any physical exertion because it is so exhausted, and I am out of breath and cannot sing or talk for any amount of time because of this. This is getting scary because as we speak I have a terrible sinus infection, but am unable to treat it because anytime I take the amoxicillin I was prescribed the reaction gets worse. If I tell my doctor, all they will do is prescribe me a different antibiotic in which I will react the same way! It's horrible, because what if I can't fight off the infection on my own?? Is there ANY disease that, genetic, chronic, that ANYONE knows of that could cause an intolerance of certain foods and medications? I used to be able to take a whole tylenol, now I cut a sliver of the pill and it has the same effect! Doctors are clueless, I can't find anything with my research, and I am scared of dying! What if my body can't tolerate the medication needed to fight off bacterial illnesses like the one I have right now???

Please, any help right now would be wonderful, a godsend. I don't know where to turn-please someone point me in any direction.

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36 Replies:

  • I'm bumping this just in case anyone sees it who might know anything.
    angelpie545 16 Replies Flag this Response
  • I have a few of those symptoms. My doctor thinks that it is my gallbladder. Have your doctor mentioned anything about your gallbladder?
    mailman87121 8 Replies Flag this Response
  • No, we haven't looked at possible gallbladder issues. Might I ask what symptoms are you experiencing that mimic mine and to what severity they affect you? Mine are so bad that I cannot work.
    angelpie545 16 Replies Flag this Response
  • Back in December while I was at work I felt faint. I also had stabbing chest pains, blurry vision, ringing in my ears, sharp back pain between my shoulder blades, nausea, my heart was racing at about 115 BPM. I thought that I was having a heart attack. An EKG and a blood enzyme test ruled out any heart problems. My primary care doctor examined me and ordered a ultrasound or my gallbladder (which came back normal) and a HIDA scan to test the performance of my gallbladder. The HIDA scan came back abnormal with a 35% function rate. I met with the surgical team and I was told that surgery would no be an option because 35% is borderline. I am still having these problems. I wish the best of luck to you. I know how scared you are. If you have anymore questions or need moral support please feel free to E-MAIL me. My E-MAIL address is mailman87120@yahoo.com. Please use a subject I don't want to mistake it for SPAM.Chris
    mailman87121 8 Replies Flag this Response
  • Back in December while I was at work I felt faint. I also had stabbing chest pains, blurry vision, ringing in my ears, sharp back pain between my shoulder blades, nausea, my heart was racing at about 115 BPM. I thought that I was having a heart attack. An EKG and a blood enzyme test ruled out any heart problems. My primary care doctor examined me and ordered a ultrasound of my gallbladder (which came back normal) and a HIDA scan to test the performance of my gallbladder. The HIDA scan came back abnormal with a 35% function rate. I met with the surgical team and I was told that surgery would not be an option because 35% is borderline. I am still having these problems. I wish the best of luck to you. I know how scared you are. If you have anymore questions or need moral support please feel free to E-MAIL me. My E-MAIL address is mailman87120@yahoo.com. Please use a subject I don't want to mistake it for SPAM.Chris
    mailman87121 8 Replies Flag this Response
  • Yes, I had thought of Lyme disease-but since I have state insurance, seeing a Lyme-literate MD is going to prove difficult, although I am searching. Lyme has been on the back of my mind for a couple of months now but the only thing is that I never get fevers...ever. The last time that I had a fever was almost three years ago..but I know that doesn't rule out Lyme. I've had the Western Blot test for Lyme but never the Igenex lab testing which is supposed to be quite accurate. Oh-and the Western blot was negative for Lyme, and without a positive test, most MD's won't diagnose Lyme unfortunately.
    angelpie545 16 Replies Flag this Response
  • Does anyone know of, in their experience, ANY disease that presents with the following symptoms? It started with an intolerance to alcohol. Then, I had a lump in the throat and a voice change, with ears ringing and pressure in the ears. Then, I started having neurological symptoms: confusion, personality changes, fear of being alone/panic attacks, memory loss, inability to process complicated bits of information, and seeing spots and bright lights. Most recently, I stopped tolerating dairy and gluten, so have eliminated that from my diet. Then, I developed this pain in my stomach, right above my heart, feels like a fist is present there, like someone is pressing right into my stomach. My abdominal muscles are constantly twitching and contracting, and because of the pressure, I constantly feel like I'm going to faint. Next item-which is the item of most concern. I have stopped tolerating all medication-even antibiotics. The slightest bit affects me horribly, and everything that I take, I have the same reaction: horrible stomachache followed by a spacey feeling, then everyone's voices sound far away and I feel very dizzy and get out of breath like I'm going to faint, then I start shaking and my arms and legs feel "bloated" kind of like how they feel when a blood pressure cuff is on. They sting like they are "too filled" with blood and have these sharp stabbing pains. I know this doesn't make any sense, and I am in tears as I am writing this, but I've had it up to here! No doctor is taking me seriously, and I'm almost bed-ridden now. My body cannot tolerate any physical exertion because it is so exhausted, and I am out of breath and cannot sing or talk for any amount of time because of this. This is getting scary because as we speak I have a terrible sinus infection, but am unable to treat it because anytime I take the amoxicillin I was prescribed the reaction gets worse. If I tell my doctor, all they will do is prescribe me a different antibiotic in which I will react the same way! It's horrible, because what if I can't fight off the infection on my own?? Is there ANY disease that, genetic, chronic, that ANYONE knows of that could cause an intolerance of certain foods and medications? I used to be able to take a whole tylenol, now I cut a sliver of the pill and it has the same effect! Doctors are clueless, I can't find anything with my research, and I am scared of dying! What if my body can't tolerate the medication needed to fight off bacterial illnesses like the one I have right now??? Please, any help right now would be wonderful, a godsend. I don't know where to turn-please someone point me in any direction. Look into candida overload. It can cause these symptoms, and most docs are completely clueless on this problem! Visit www.candidasupport.org or www.wholeapproach.com these are two websites I use for my patients with candida...I am not affiliated with them, they have just helped me and my patients. Candida is hard to get rid of, and western antifungal meds don't work and are toxic...I have used Threelac in the past and it has helped tremendously...but there are other antifungal herbal cleanses you can take. Do you also have chemical/perfume/smoke sensitivities? Mood swings? Itchy skin? Chronic sinusitis? Please get yourself the very best PROBIOTIC you can afford and take a double dose daily for at least a month. The PROBIOTIC will help get your intestinal flora back on track. If you have candida, tho, you will need to kill the fungus - diet and probiotics are not enough IME. It can take two months or more to do this - please be patient. I remember when I first started taking Threelac a few years ago that I felt better after just a couple weeks... The problem with antibiotics are they are so overused...there are other ways to clear a bacterial infection - goldenseal and berberine are two very good antibacterial herbs. Fresh garlic is antibacterial, antimicrobial, antifungal. Please research other options before resorting to taking antibiotics and use them only if necessary. By the way, candida can cause you to feel "drunk" even when you are not. Alcohol intolerance is a big symptom of this. Please research this and see if it fits. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Okay, yes, candida does sound very plausible-but can it be debilitating enough to cause me the lack of function that I have? I am so far from being healthy that I don't remember what it was to feel even able to get out of bed. I can barely get up to clean my house, let alone anything else.
    angelpie545 16 Replies Flag this Response
  • Thyroid problems can account for your symptoms. Check out Mary Shomon's thryoid site and see if you have a match....thryoid is in the throat area so that may account for that feeling...I had thryoid problems and my voice changed and I felt I had a lump in my throat along with many other symptoms. Thryroid is VERY common and can be treated fairly well with a good doctor ....good endocrinologist. After my thryoid problems I am also very sensitive to many things.....but you may have more than one things going on....but well, try to deal with one at a time and then cross it off the list.... Joan
    Joan5555 316 Replies Flag this Response
  • Or probably you have thyroid AND other problems. Have you had a cardiac work-up? or seen a pulmonologist for shortness of breath? I just found a web-site ("globus,voice change and tinnitus") that will probably make you irritated with docs, but has some hard questions you must answer.www.egms.de/en/journals/cto/2005-4/cto000027.shtml It seems ENT's (ear docs) are aware of problems that might be psychosomatic and have subtle ways of interviewing you. Anyone interested why docs think everyone is cuckoo should read this. But, they do stress that everything should be checked out first before applying the label of psychosomatic to a patient's problem. Have you ever thought of hypnosis to help with your pill problem? Maybe you have developed a phobia that could explain why the pills don't work. Your stomach is below your heart, so I think your pain is either esophageal, gall bladder or pancreatic. Pancreatis can be awful. Have you ever had a sonogram of the abdomen/pelvis and bloodwork for amylase/lipase when you've had the pain?
    rad-skw 1605 Replies Flag this Response
  • Is there ANY disease that, genetic, chronic, that ANYONE knows of that could cause an intolerance of certain foods and medications? I used to be able to take a whole tylenol, now I cut a sliver of the pill and it has the same effect! Doctors are clueless, I can't find anything with my research, and I am scared of dying! What if my body can't tolerate the medication needed to fight off bacterial illnesses like the one I have right now??? Please, any help right now would be wonderful, a godsend. I don't know where to turn-please someone point me in any direction. Yes.. chronic fatigue syndrome can have the symptoms you've described, I have many of the same symptoms including to foods and drugs.. my situation with drugs is so bad that when im needing drugs, doctors are now fearing to give them to me..due to the likelihood that im going to have a bad reaction to them, (from hives to brain fog and many other symptoms from drug reactions i get). Like myself, it sounds like you have "Multiple Chemical Sensitivity" (what you are experiencing with your drug reactions.. MCS) and "food sensitivities" (both problems that most doctors are not familiar with.. but MCS can actually become quite serious, (i know a few who need to wear masks and take oxygen due to it as their reactions are that bad!). With MCS, studies have shown half of those with that condition.. actually have CFS (so hence why im suggesting here you may have CFS)... it's the CFS which often causes the MCS. (do a search for "multiple chemical sensitivity") MCS is also known as 21st century illness.. one of the most common reactions is to perfumes. (most of us MCSers find them esp bad. I have trouble even having appointments at my local doctors due to other patients there wearing perfumes..so usually cant even wait in the waiting room so they have to come and get me from outside when im called in). The clinic has had to remove all their air fresheners etc..cause of me. With those with CFS.. it is recommended only that childrens drug dosages are given and even those by many arent tolleranted well. and alcohol intollerance is normal in CFS, in fact some CFS specialists wanted to get that symptom added to the official diagostic criteria as that symptom is so common with it. Find a CFS support group in your local area and start asking those there for the names of doctors who specialise in CFS or check out the CFS doctor list at http://www.co-cure.org/Good-Doc.htm ........... There is also an extremely rare serious disease which can cause MCS symptoms as well.. but you didnt mention one of the common symptoms of that disease.. so i think my other suggestions are much much more likely
    taniaaust1 2267 Replies Flag this Response
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  • Let's see here-I have had a full cardiac workup, which indicated no issues expect for my heart tended to speed up very quickly (this was a stress echo). I have also had a pulmonary function test, which turned out to be within the normal level, and my thyroid has been tested and appears to be completely normal. I am POSITIVE that my symptoms that come with taking pills are NOT psychosomatic, because they happen whether I know I'm taking the medication or not. I stopped taking my amoxicillin for a couple of days because of the reaction, but my infection started coming back so I decided to try a different way of taking the medication ,and opened the capsule and mixed the powder with water and swallowed it, and I seem to be having less reaction, although I am still shaking. I'm at least not completely nauseated, but I am shaking. It is a full 500mg dose that I'm supposed to be taking 3X a day. I am going to start with 2X a day, because I know that some docs prescribe it at that amount, and see if the reaction is less.
    angelpie545 16 Replies Flag this Response
  • My suggestion on the candida front is to try a good cleanse and see if your symptoms improve. If they don't after two or three weeks, then it most likely is something else happening. But you would need to give it at least 2-3 weeks to judge... Did you happen to take a course of antibiotics prior to developing these symptoms? Can you think back and find out if this happened? Chinese medicine would also be helpful. In Chinese medicine your throat symptoms are referred to as "plum pit Qi" and is very well treated with an herbal remedy called Ban Xia Huo Po Tang...a good Chinese acupuncturist/herbalist would be able to diagnose and treat your symptoms. It is just a different form of medicine, but very effective. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Acuann,My daughter is celiac, allergic to wheat. Amoxillcin is notorious for having gluten! The only way you can confirm a prescription medication doesn't have gluten is paying a service who updates you with the information or what I do,which is to challenge your pharmacy manager to tell you the MDC# of the specific medication your doctor wants to write a prescriptiuon for. You then ask the pharmacy to look up in the red book (they'll be impressed you know this) the manufacturer and their phone number. All pharmacy manufacturers are on the East Coast so there will be a day's delay to ensure the meds are safe. The chemical property included in the medicine box does nottell if gluten is in the med. The pharmacist will try to convince you it does. Some helpful sites are www.celias.org and clan thompson gluten free drugs and the gluten free mall. Best of Luck! Get off that medicine!
    Anonymous 42789 Replies Flag this Response
  • Acuann,My daughter is celiac, allergic to wheat. Amoxillcin is notorious for having gluten! The only way you can confirm a prescription medication doesn't have gluten is paying a service who updates you with the information or what I do,which is to challenge your pharmacy manager to tell you the MDC# of the specific medication your doctor wants to write a prescriptiuon for. You then ask the pharmacy to look up in the red book (they'll be impressed you know this) the manufacturer and their phone number. All pharmacy manufacturers are on the East Coast so there will be a day's delay to ensure the meds are safe. The chemical property included in the medicine box does nottell if gluten is in the med. The pharmacist will try to convince you it does. Some helpful sites are www.celias.org and clan thompson gluten free drugs and the gluten free mall. Best of Luck! Get off that medicine! I had no idea that amoxicillin has gluten in it!! Thanks for that tip. Have you tried NAET (Nambudripad Allergy Elimination Techniques) for your daughter? It is fantastic and can help control celiac. Please research this technique. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • WOW!! I had NO IDEA either!! That's crazy!! Well, that would explain my weird reactions! My sister is celiac as well as am I-I will give her a call to see how she has done on amoxicillin in the past.
    angelpie545 16 Replies Flag this Response
  • As far as antibiotics go.. if you are not going to take them as prescribed, it may be better not taking them at all. Im saying this as many things can become resistant to the antibiotic if you dont take as prescribed eg wrong dose or in a wrong way. You really need to talk to your doctor about how you cant take the med as advised. ............. Sometimes stomach acid may destroy the med.. so having it out of the capsule (which may protect it some) may destroy the med some (and allow resistance). Meds are meant to be absorbed at certain rates or at a certain point in the body too (some may be meant to be absorbed in the stomache..others in the intestines).
    taniaaust1 2267 Replies Flag this Response
  • What age are you? Are you taking anything like antacids, acid blockers, protein pump inhibitors that will lower the stomach acid PH and decrease digestive juices if so.... that will make food malabsorbtion issues worse and some drs feel it increases the chance of infections in the GI tract. One thing to look into also is porphyria; can be genetic or acquired disease that has many symptoms common to other illnesses. There are 8 kinds of porphyria diseases known at this time. http://www.porphyriafoundation.com/about_por/overview/index.htmlhttp://wrongdiagnosis.com/p/porphyria/symptoms.htm Because you have both psychiatric symptoms and severe abdominal pain, and also of note is the intolerance to alcohol you should be screened for porphyria and other liver and metabolic diseases. Also, with regards to gall bladder problems many porphyria patients end up having their gallbladders removed because they stop working (dysfunctional). Though porphyria is incurable, you can manage its symptoms by learning to avoid things which trigger attacks and changes in diet/lifetstyle. You can live a long life, knowing you have this problem you can manage the attacks and hopefully limit the number and severity of them. Certain drugs, alcohol , infections are big time triggers for porphyria attacks. Intolerances to certain foods and medications are quite common with porphyria (hallmark probably), because the liver has a hard time handling anything that induces certain enzyme pathways (especially the )P-450 pathway). Hormones also are triggers, and many young adults suffer their first porphyria attack during the age of leaving adolescence and entering adult hood, or with pregnancy and giving birth. Birth control pills often trigger attacks. Peri-menopause is also a difficult time for many folks who have genetic porphyrias. Porphyria of the genetic kinds will be seen in families and their is often a history of family members with auto-immune disorders, psych illnesses, gastrointestinal disorders (like UC, Celiac, Crohns). Also connected are cancers. Another connection for porphyria is a link to CFS and MCS ;). Since you do have problems handling meds of many sorts I suggest to you to look into the porphyria drug data bases..... even if you don't have porphyria with your hx it won't hurt you to choose the drugs less taxing on the big P-45o pathway. Also, avoid tylenol. Supposedly safe for porphyria folks.... it still is a leading cause of liver failure I believe and it affected my liver when I took it for extreme pain this year. http://www.porphyriafoundation.com/about_por/drugs/index.htmlhttp://www.porphyriafoundation.com/about_por/drugs/drugs02.html There are some good porphyria support groups at yahoo if you are interested and need support to manage porphyria attacks. Please keep in mind you can still have porphyria and also have other illnesses going on at the same time. And what you have might seem like porphyria and be something similar. But because of the psych psymptoms, the severe abdominal pain and intolerances to meds/alcohol.... porphyria needs to be one of the things to rule in or out. Take care. BIG HUG tdwi ;) As far as the anti biotics go... you should not stop and start the doses or take them at half stregth the way you did.... you can get far worse bugs when you do that as the bugs become resistant to the drug. They need to be taken as prescribed. =====================Does anyone know of, in their experience, ANY disease that presents with the following symptoms? It started with an intolerance to alcohol. Then, I had a lump in the throat and a voice change, with ears ringing and pressure in the ears. Then, I started having neurological symptoms: confusion, personality changes, fear of being alone/panic attacks, memory loss, inability to process complicated bits of information, and seeing spots and bright lights. Most recently, I stopped tolerating dairy and gluten, so have eliminated that from my diet. Then, I developed this pain in my stomach, right above my heart, feels like a fist is present there, like someone is pressing right into my stomach. My abdominal muscles are constantly twitching and contracting, and because of the pressure, I constantly feel like I'm going to faint.Next item-which is the item of most concern. I have stopped tolerating all medication-even antibiotics. The slightest bit affects me horribly, and everything that I take, I have the same reaction: horrible stomachache followed by a spacey feeling, then everyone's voices sound far away and I feel very dizzy and get out of breath like I'm going to faint, then I start shaking and my arms and legs feel "bloated" kind of like how they feel when a blood pressure cuff is on. They sting like they are "too filled" with blood and have these sharp stabbing pains. I know this doesn't make any sense, and I am in tears as I am writing this, but I've had it up to here! No doctor is taking me seriously, and I'm almost bed-ridden now. My body cannot tolerate any physical exertion because it is so exhausted, and I am out of breath and cannot sing or talk for any amount of time because of this. This is getting scary because as we speak I have a terrible sinus infection, but am unable to treat it because anytime I take the amoxicillin I was prescribed the reaction gets worse. If I tell my doctor, all they will do is prescribe me a different antibiotic in which I will react the same way! It's horrible, because what if I can't fight off the infection on my own?? Is there ANY disease that, genetic, chronic, that ANYONE knows of that could cause an intolerance of certain foods and medications? I used to be able to take a whole tylenol, now I cut a sliver of the pill and it has the same effect! Doctors are clueless, I can't find anything with my research, and I am scared of dying! What if my body can't tolerate the medication needed to fight off bacterial illnesses like the one I have right now??? Please, any help right now would be wonderful, a godsend. I don't know where to turn-please someone point me in any direction.
    TaylorDeelwithit 382 Replies Flag this Response
  • check into Hodgkin's Disease:http://www.answers.com/topic/hodgkin-s-disease?cat=health
    Monsterlove 2921 Replies Flag this Response
  • Yes, I've heard porphyria mentioned before, I'll have to insist in being checked for that! As far as the antibiotic, I called my doctor and asked to be prescribed a different one, so we'll see how that one goes. I won't be taking any more of the amoxicllin as I don't want to start and stop and then create a resistant infection. I'm making a research list as we speak. My neurologist that I had been seeing told me the MRI of my head was fine (done with an open machine w/contrast). We are going to do one of my neck (cervical spine) for unrelated reasons (pressure in the back of my head, ear ringing) and perhaps that will yield some answers for other issues.The only thing that makes me wonder if I don't have porphyria is that I tend to have very, VERY low blood pressure that is at times very debilitating.
    angelpie545 16 Replies Flag this Response
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