Discussions By Condition: I cannot get a diagnosis.

Dr can't find an answer and I need one

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: neetzee
  • August 3, 2008
  • 08:03 AM

I am a 47 year old female. Over the past year and a half I have been hospitlized several times all starting with vomiting, abdominal pain on the left side going to the back and pain in my legs and arms making sleep impossible. I have had ct scans, mri's, blood test, you name it over the last year I've had it. I've had what my doctor says is a million dollar work up. Just got out of the hospital yesterday after another three days in and they had discided that it is my body's answer to stress. Okay I could believe this if I had been under more stress than normal but the last few months haven't been that stressful for me. Last Nov they thought it was a disfunctional odi spencter now they aren't so susre. Frist they think it might be one thing then they say the test are borderline so that is not it and on and on. Now they are basicly telling me it is all in my head. I'm feed up with doctor's hospitals and the whole nine yards. I would rather be told that it is really bad then they have no ideal what is causing it. I have lost as much as 12 pounds in less than a week with this. Only lost about three pounds this time. I'm 5'3" and I weigh about 125 pounds. Two years ago I was 147 pounds. I am not trying to lose weight. I never know from one day to the next day if I will get up vomiting or not. I have no gallbladder it was removed 4 years ago for non function. I just want some answers and I don't seem to be getting them. Help please.

Reply Flag this Discussion

5 Replies:

  • Can you get us the various readings of your blood panels, such as liver and thyroid profiles. Also have they they taken hormone level profiles. Just because had blood tests, did they look for the right thing. As one doctor told me sometimes the hunter does not recognize the prey. (He was one who ultimately helped me with a chronic sinus infection in sphenoid cavity. What type of doctors have you been to? Have you been to endocrynologist or metobolic specialist? What are your eating habits that are before the vomiting? There are some metabolic disorders tied to that. Most doctors are not aware of them. Believe only for babies. Have you had mri catscans for herniated discs for arms and legs?Did they check you for endometritis. I had so bad, that I has severe back, abd pains, pain down legs and could barely walk. Just one thought. I can tell you are in great distress, but we really need more specific details. If you don't have a copy of each test and results. You should. Take control so you can help find out what is wrong. Please provide more info.:confused:
    Abbydoodle 138 Replies Flag this Response
  • Thanks. I am depressed over all of this. I don't have the resent test result but she will send them to me this week sometime she usually does. Eating habbits are normally healthy my husband is diabetic so our deit is narmally low sugar, low carbs. I have been tested for gulitin intalrance which I don't have. I have seen gastraologis, hemotogist, and artritis specialist. Have arthritis in my lower legs and feet at the time they did the scan. I haven't been able to get them to do a harmone panal because I've been in meopose for more than 2 years and they say that an imblance in the harmones would not do this. Bone scan showed two bulging disk in back but not bad right now to cause the pain. They say that my leg pain is RLS but the meds they give me for that do not seem to help. About two years ago had a stress test and it was fine, have seen a cardiologist. See family history; both parents diabetic, only one of two chidlren out of seven not diabetic, mother copd, chf, with a long list of other things died of kidney filure, father mass heart failure, older brother died last year of heart failure at age 60, and second brother had 4 bi pass heart surgery last year, yonger bother two stints. So you get the drift not a good family history so I try to watch things. I have a 7 year old grandson with type 1 diabetis. So I really do watch diabetis as much as I can. I have my sugar evels checked at least once every six months . I do have copd but it is not too bad as of yet. In Nov of last year they tested me for porphyria they said the first test said that I did have it but the second test came back in normal ranges. This I didn't under stand because if it is so rare how can I test postive for it but not have it? Said they would repete the test when I was in a really bad attach but this one wasn't bad enough. What do I have to be dieing to get the answers that I need. There are general symptoms that they put up to me getting older like tiredness, lack of engergy, not being able to sleep more than 4 hours at a time, shortness of breath (that and the copd), forgetfulness, lack of concentration and so on. So where do I go from here. I have had pantritis and it could happen again as they don't know what caused it in the first place. Now the ER here has it on my records that it is stress and I'm nuts with it all in my head so they will just do what needs to be done to stop the vomiting and send me on my way. I used to be able to be able to email my doctor and get some answers but now she doesn't always answers them. I feel like I'm just being put off to the back and until something really bad happens to me then who know it will probablly be too late to do anything. When I'm feeling good things are fine but I just don't know from day to day what I will feel like and that is no way to live. At least I don't think so. I hate to be thought of as someone who just "thinks" there is something wrong with them. I know there is something wrong I just don't know what. Now it is too a point that after this one when they disided that it was just stress that my husband doesn't want to hear if I feel bad or not either. Just I need to hand stress better so I need to let the family problems with my kids and what not go and let them take care of it them selves they are adults after all. Well that is not how I was raised. They are my kids or my brothers or my sisters and I do what I can for them when I can. (He's my second husband and they are not his kids) And of course I must take care of him. Now I'm just sounding petty and that is not me. I'm just confused and want to know what is going on with my body.
    neetzee 2 Replies Flag this Response
  • :)Neetzee, Reading your letter, and seeing some of your issues including (and no offense intended because may be part of the issues) the spelling and such, I think your doctor was looking in the correct area buy may not have gone far enough. Especially since ran gluten and porpyria. You possibly are eating a diet in high protein. If you have one of the metabolic disorders that is tied to problems with digesting the protein you WILL vomit. It will also cause mental issues like you have, heart problems, restless legs etc. Arthritis and the herniated discs. I have at least 7. Now if you are really feeling crappy with mental confusion, the best thing is to go to doctor tomorrow if can, have blood draw for blood plasma ammonia level -- tell them to follow special protocol about putting on ice. Next -- have doctor give you the 24 hour allopurinol challenge for urea cycle and mitochondria disorders. Now don't be disappointed if negative, mine was but am truely positive. This next you can do yourself and see if you improve any. Be careful. Calculate the amount of protein you are eating in a day right now. Before the found out what mine was (and yes I vomitted) I ate up to 300 grams of protein a day. But could loose no weight. If you have a protein related issue, take your protein count to 40 grams per day. No less at this point. See if after a week if you don't feel better. If doctor is not treating thyroid, as about treating with armour thyroid. If you do have a borderline metabolic disorder, it will screw up thyroid. Also for restless legs the diatician recommended the following to me. I have been using since 1999. And hubby used it after neuro surgery. It works for us. Hope works for you. Country Life Active B-6 P5P/PAK. It is the only brand that works. No other brand works for my restless legs. My metabolic specialist has me on the following supplements to help protect heart and liver:L-CarnitineCoQ10B-Stress Vitamins --full span of bs, vegetarian, no glutenVitamins that has includes just about everything but kitchen sink but are gluten free. If your doctor is willing to look up, have them look up urea cycle disorders.Where do you live -- can tell you where nearest metabolic specialists are that work with it. Your vomiting is a flag. There are 41 types. May not be urea, but man you sound like you are in the boat with our group. Keep your toes crossed and lets see if we can get some answers. Will be here for you.
    Abbydoodle 138 Replies Flag this Response
  • i feel for you. Doctors hate not knowing what is wrong with someone and in that case so often will put things down to just stress or depression. In Nov of last year they tested me for porphyria they said the first test said that I did have it but the second test came back in normal ranges. This I didn't under stand because if it is so rare how can I test postive for it but not have it? Said they would repete the test when I was in a really bad attach but this one wasn't bad enough. If i was in your shoes, i'd be looking for someone who specialises in porphyria to get their opinion of things. Another thing maybe consider being tested for is Addison's disease.. this illness is serious and can often be missed until the person has a life threatening attack. One gets Addison's crisis with this.. where symptoms can suddenly flare and can include severe vomiting. Addison’s disease is not usually apparent until over 90% of the adrenal cortex has been destroyed, so that very little adrenal capacity is left. This can take months to years and is known as primary adrenal insufficiency. Symptoms of the disease, once advanced, can include severe fatigue and weakness, loss of weight, increased pigmentation of the skin, faintness and low blood pressure, nausea, vomiting, salt cravings and painful muscles and joints. Because of the rather non-specific nature of these symptoms and their slow progression, they are often missed or ignored until, for example, a relatively minor infection leads to an abnormally long convalescence which prompts an investigation. Frequently, it is not until a crisis is precipitated that attention is turned to the adrenals.
    taniaaust1 2267 Replies Flag this Response
  • Thanks guys. Spelling has always been a problem for me and lately my thoughts just jump around and I can't always get them down right. Sorry. I live in Terre Haute IN. I'll look into both answers. Thank you. It is a starting point for me anyway. I'll keep you posted on the results. Protein I don't eat large amounts of usually less than 65 g a day if that but I'll keep an eye on it and see what happens. Thank you all again. I've got to get to work now. Check in when I get home.:)
    neetzee 2 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.