Discussions By Condition: I cannot get a diagnosis.

10 doctors no end in site Please some one help

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: Anonymous
  • July 28, 2008
  • 11:26 PM

I am a 28 yr old male, and have been fairly healthy with the exception with fatty liver disease and ok this all started in november a yr ago. I used to way 245 pd I now way 154 and yes I do eat, I lost the weight without trying and am continueing to lose it and no one knows why. Have lots of pain that include both my sides chest, back and abodmen, weakness, lack of thought process, wasn't able to breath right for awile either unsteady gait, musle spasams and am always tired.

Things that have been ruled out, wilson's disease, wipples disease, chones, lymes, cilieac disease, ankylosing spondylitis, reiters, rheumatoid arthridis, cancer,porphyria, aig blockage.

What I do have is some gastritis, Gerd, a mild case of degenerate disk disease, and 20 yrs of epilepsy but the doctors said that none of these things can cause the problems I'm having. Doctors have no idea whats wrong with me in the case of pain and rapid wait loss my gi docotor is sending me to an endocronlogist because my thyroid level came back low even though it was tested 10 times and only came back low once. thinking its a false negative but who knows. Doctores are just treating the symtoms now before they weren't doing anything. Please someone help

B12 shots seem to help with my thougth process, my weakness, and energy however im not b12 defficient was tested for pernicious anemia came back <1:20 in range

medications
for epeilepsy
zonagan 300 mg once a day
clonazapan 2mg before bed

for gastritis and gerd
previced 30 mg mcd 2 times a day before food
zantack 300 mg (2 150 mg at once before bed)

for pain
idprofin 800mg when needed 4 max aday, i dont take that much though
baclofen 10 3x a day( for the muscle spasams)
for eneregy and thought process
b12 shot 1000mlb once a month

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14 Replies:

  • oooh you look like me twenty years ago. I will mention some stuff to consider. 1. Thyroid tests -- the norm value is just that. That is the average that all the testing companies have come up with. It is not what is normal for your body. I have other problems, but finally convinced my internist to give me armour thyroid (bioidentical instead of synthroid). After we increased it to 4 grains over time I could get out of bed in the morning without be shaken to death by hubby. Do you know after several months, that amount only moved my test levels a tenth or so. Your body can have loads of thyroid stuff floating around but if it does not metabolize it --it is not doing you one iota of good. So don't hope for a false negative. It can help with energy, thought processes etc. Looks like your doctor is aware of the first level of disease tied to a fatty liver at your age. Ask him to look at running alpurinol 24 hour urine challing for the basic metabolic disorder tied to fatty liver. If it comes back negative it can be a false negative and there are about 5 others that can be tied to the fatty liver. They are also tied to seizures, gerd, body pain, muscle spasms, etc. You might try this for the body pain, it is a long shot but natural. If it works you are better off. (Which by the way the thyroid can cause pain in buttocks, thighs and such. Will hurt each morning when you wake up). Buy black cherry juice (pure). Drink a quart each day. Try for a week. If you feel better, it is moving stuff out of body. If not, you tried a nonharmful idea. The low B12 will be tied to your fatty liver. Should be taking the entire Bstress family. Good for the liver. Be careful with taking Ibuprofen and other NSAIDs they are bad for the liver. I know how bad the hurts can be. Been there, am there. Talk to your doctor about the thyroid. Double check your other hormone levels may need help. Also ask about urea cycle metabolic disorders. Ask to have the alipurinol challenge. If you have a metabolic disorder, that will also explain the herniated discs and such. I have a list of companion disorders and diseases you wouldn't believe. That is why so hard to diagnose. Doctors think it only happens at birth. Oh I forgot a very important thing. Can you provide me with your eating habits. What are you eating now. Did you do a diet to loose weight? If so what was it? That may answer my other questions about the urea cycle that is the first phase of digestion that can be broken.
    Abbydoodle 138 Replies Flag this Response
  • oooh you look like me twenty years ago. I will mention some stuff to consider. 1. Thyroid tests -- the norm value is just that. That is the average that all the testing companies have come up with. It is not what is normal for your body. I have other problems, but finally convinced my internist to give me armour thyroid (bioidentical instead of synthroid). After we increased it to 4 grains over time I could get out of bed in the morning without be shaken to death by hubby. Do you know after several months, that amount only moved my test levels a tenth or so. Your body can have loads of thyroid stuff floating around but if it does not metabolize it --it is not doing you one iota of good. So don't hope for a false negative. It can help with energy, thought processes etc. Looks like your doctor is aware of the first level of disease tied to a fatty liver at your age. Ask him to look at running alpurinol 24 hour urine challing for the basic metabolic disorder tied to fatty liver. If it comes back negative it can be a false negative and there are about 5 others that can be tied to the fatty liver. They are also tied to seizures, gerd, body pain, muscle spasms, etc. You might try this for the body pain, it is a long shot but natural. If it works you are better off. (Which by the way the thyroid can cause pain in buttocks, thighs and such. Will hurt each morning when you wake up). Buy black cherry juice (pure). Drink a quart each day. Try for a week. If you feel better, it is moving stuff out of body. If not, you tried a nonharmful idea. The low B12 will be tied to your fatty liver. Should be taking the entire Bstress family. Good for the liver. Be careful with taking Ibuprofen and other NSAIDs they are bad for the liver. I know how bad the hurts can be. Been there, am there. Talk to your doctor about the thyroid. Double check your other hormone levels may need help. Also ask about urea cycle metabolic disorders. Ask to have the alipurinol challenge. If you have a metabolic disorder, that will also explain the herniated discs and such. I have a list of companion disorders and diseases you wouldn't believe. That is why so hard to diagnose. Doctors think it only happens at birth. Oh I forgot a very important thing. Can you provide me with your eating habits. What are you eating now. Did you do a diet to loose weight? If so what was it? That may answer my other questions about the urea cycle that is the first phase of digestion that can be broken. Thank you so much of replying this my first post of my illness was kind of nervous about it but anyways my eating habits are the same as they were when i was 245 pounds no drastic changes, if anything i eat more now than than I just cant put on the pounds, its like it goes right through me. I mean when i get the b12 **** i put on some wheight sustain for a couple weeks and than drop it again like i was 170 last week now i'm 154 i'm wasting away. cant even work. I worked at a hospital in the food and nutrition and dept dont know how muck longer my wife can keep us afloat. Oh i just also want to add depresstion has been ruled out.
    Anonymous 42789 Replies Flag this Response
  • B12 shots seem to help with my thougth process, my weakness, and energy however im not b12 defficient was tested for pernicious anemia came back I believe you are B12 deficient, at least by your current symptoms. Your levels will be normal because you are getting the injections, but I don't believe you are gettting a true therapeutic dose...please visit the B12 misdiagnosis thread - it is verrrry long, but very helpful. B12 deficiency can cause many of your symptoms. Sublingual Methylcobalamin B12 lozenges (from Jarrow) would be helpful for you to take in between the monthly injections. You cannot overdose on this vitamin, and many people need to take extremely high doses to get therapeutic benefits (over 5,000 mcgs per day). I am sorry I don't have any ideas concerning your weight loss. How is your digestion and how frequent are your bm's? DOM
    acuann 3080 Replies Flag this Response
  • I believe you are B12 deficient, at least by your current symptoms. Your levels will be normal because you are getting the injections, but I don't believe you are gettting a true therapeutic dose...please visit the B12 misdiagnosis thread - it is verrrry long, but very helpful. B12 deficiency can cause many of your symptoms. Sublingual Methylcobalamin B12 lozenges (from Jarrow) would be helpful for you to take in between the monthly injections. You cannot overdose on this vitamin, and many people need to take extremely high doses to get therapeutic benefits (over 5,000 mcgs per day). I am sorry I don't have any ideas concerning your weight loss. How is your digestion and how frequent are your bm's? DOMI have visted the b12misdiagnosis thread and it has been very helpful, recently i did have another shot by order of my family md 2 shots within 2 weeks of each other seemed to help more, I was also advised to take b12 complex vitamins in between shots as well as multi vitamins, as far as my bow movments go, I go about 3 times a day and its very painful. My urine is painful as well it takes me like 10 minutes to go and its dark, not bloody dark but not normal i'v had 2 endoscope precedures as well as a colonsocoscopy, and they found was that i had an enflamed rectum. i forgot to mention in my first post i had expolortoy surgy and I had inflamed lymnodes outside my colon which were negative and an enlarged speen as well as 3accessory spleens which were taken out for biopsy nothing therer either, i feel like an episode of mistory diagnosis or house
    Anonymous 42789 Replies Flag this Response
  • I dont know what you could be.. your symptoms could be many things. but those with "chronic fatigue syndrome" can at times find improvement with B12 shots . Those with CFS can suffer MANY different symptoms.. thou your symptoms arent looking like an obvious CFS case so i arent very sure if that could be your issue. Fibromyalgia thou can cause tiredness, pain (the symptoms you have can certainly be fibro) and this can go along with other illness... i suggest you see someone who sees people with fibromyaliga to get that ruled out (or in). I also suggest for you to have your vitamin D levels checked.. that can cause body pain etc if low. (and also if you do have something like CFS, D levels are often an issue too).
    taniaaust1 2267 Replies Flag this Response
  • You may want to Google Chronic Fatigue Syndrome and/or OI (ortostatic intolerance) you may have one or both.....worth reading about. Best wishes :)
    aliceanna 41 Replies Flag this Response
  • Low B-12 usually is an issue with liver problems. Like it or not. The man has a fatty liver. I would advise other not to send him too far off path --this could damage his liver more. I have a fatty liver because of metabolic disorder that was not diagnosed until age 49. Am now older. I had two biopsies 10 years apart. The last biopsy in 2006 found the rare disorder that was slowly killing me. What I found out is that I cannot digest protein effectively. It produces nitrogen which my body cannot get rid of. This is toxic to brain and kills you. Now as part of the issues with the fatty liver, eating habits and such you can have the low B-12. In fact in most cases with the fatty liver you have low b-12. I have had since age 18. Also consistently had weird liver readings, inconsistent readings for all the minerals etc. One time fine next time not. With the extreme weight loss, I admire your doctor for trying. I really would contact him about second level disorders with the liver as well as the thyroid and hormones. The second level disorders blow the thyroid and hormones. Please at least talk to him about urea cycle disorders and other metabolic disorders of the liver. You are an extremely prime suspect and have all the symptoms. You don't say where you live. Do you eat a lot of protein?
    Abbydoodle 138 Replies Flag this Response
  • Low B-12 usually is an issue with liver problems. Like it or not. The man has a fatty liver. I would advise other not to send him too far off path --this could damage his liver more. I have a fatty liver because of metabolic disorder that was not diagnosed until age 49. Am now older. I had two biopsies 10 years apart. The last biopsy in 2006 found the rare disorder that was slowly killing me. What I found out is that I cannot digest protein effectively. It produces nitrogen which my body cannot get rid of. This is toxic to brain and kills you. Now as part of the issues with the fatty liver, eating habits and such you can have the low B-12. In fact in most cases with the fatty liver you have low b-12. I have had since age 18. Also consistently had weird liver readings, inconsistent readings for all the minerals etc. One time fine next time not. With the extreme weight loss, I admire your doctor for trying. I really would contact him about second level disorders with the liver as well as the thyroid and hormones. The second level disorders blow the thyroid and hormones. Please at least talk to him about urea cycle disorders and other metabolic disorders of the liver. You are an extremely prime suspect and have all the symptoms. You don't say where you live. Do you eat a lot of protein? Thanks for taking such an interst abby, I lived in bensalem,pa for about 2 yrs and I used to live in Northeast philly for the remainder of my life. I'm not sure if i mentioned it but the type of fatty liver i have is stepohepatitis the non viral type or Nash. I dont drink smoke or do any drugs, figures I'd be ill. I'm going to see an endocronlogist down at university of penn august 6th I will certainly mention these tests to him, as well as the next time i see my gi doctor who is also down at penn, can a regular family doctor order these tests?
    Anonymous 42789 Replies Flag this Response
  • I strongly suggest asking for a urine methylmalonic acid test to test for B12 deficiency. You do show a lot of signs for this. Also, since you live near Philly, I would suggest finding a good Oriental Medical doc to at least help with your pain and digestive issues. Visit www.acufinder.com for a qualified practitioner near you. Acupuncture and Chinese herbal medicine can be extremely helpful. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • wanted to put an update up, saw an endo doctor today didn't like him he thought i was straving myself because of my rapid weight loss. But after physical examination he noticed a small mass on the left side of my thyroid so he ordered some blood work and and ultra sould of my thyroid as well as stool sample to check for fat, but even after the physical exam he says the mass is problably nothing how can a docotor say that. He wants me to see a nutritnionist to count callories I can do that myself today alone i must of consumed of over 3000 callories but yet i'm still losing wait and losing it fast. And to abbydoodle I am gettting the allopuriinol challange but i have to get in blood work because my insurance wont pay for the other type.
    Anonymous 42789 Replies Flag this Response
  • Low B-12 usually is an issue with liver problems. Like it or not. The man has a fatty liver. I would advise other not to send him too far off path --this could damage his liver more. I have a fatty liver because of metabolic disorder that was not diagnosed until age 49. Am now older. I had two biopsies 10 years apart. The last biopsy in 2006 found the rare disorder that was slowly killing me. What I found out is that I cannot digest protein effectively. It produces nitrogen which my body cannot get rid of. This is toxic to brain and kills you. Now as part of the issues with the fatty liver, eating habits and such you can have the low B-12. In fact in most cases with the fatty liver you have low b-12. I have had since age 18. Also consistently had weird liver readings, inconsistent readings for all the minerals etc. One time fine next time not. With the extreme weight loss, I admire your doctor for trying. I really would contact him about second level disorders with the liver as well as the thyroid and hormones. The second level disorders blow the thyroid and hormones. Please at least talk to him about urea cycle disorders and other metabolic disorders of the liver. You are an extremely prime suspect and have all the symptoms. You don't say where you live. Do you eat a lot of protein?not a lot of protein but enough but it seem my urine is dark and my wife who is a cna looked at it and said that it looks like your urinating urine also I wanted to let you know that I am gettting the allopuriinol challange but i have to get in blood work because my insurance wont pay for the other type. I posted an update too on the second page but i wanted to address you directly as well againhttp://forums.wrongdiagnosis.com/images/misc/progress.gif
    Anonymous 42789 Replies Flag this Response
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  • I'm not sure if i mentioned it but the type of fatty liver i have is stepohepatitis the non viral type or Nash. The NCF has also discovered that in the liver biopsies of some CFS patients, there was the formation of mallory bodies. Mallory body formation, in the liver, is associated with a condition known as NonAlcoholic SteatoHepatitis (NASH) or NonAlcoholic Fatty Liver Disease *NCF stands for the National CFIDS Foundation. CFIDS is another name for CFS. ** im not too sure if you do have CFIDS or not ... but serious unexplained weight loss can happen for some with this illness too. (keep searching for another illness thou as you could have something else which is serious).
    taniaaust1 2267 Replies Flag this Response
  • not a lot of protein but enough but it seem my urine is dark and my wife who is a cna looked at it and said that it looks like your urinating urine also I wanted to let you know that I am gettting the allopuriinol challange but i have to get in blood work because my insurance wont pay for the other type. I posted an update too on the second page but i wanted to address you directly as well againhttp://forums.wrongdiagnosis.com/images/misc/progress.gif meant to say urinating protine not unrinating urine
    Anonymous 42789 Replies
    • August 11, 2008
    • 06:44 AM
    • 0
    Flag this Response
  • Can we get a update on this
    Anonymous 42789 Replies Flag this Response
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