Discussions By Condition: I cannot get a diagnosis.

Muscles Weakness (Sorry for spam)

Posted In: I cannot get a diagnosis. 77 Replies
  • Posted By: Anonymous
  • March 6, 2009
  • 08:30 PM

Hello, I am 15 years old and my brother is 18 years old. Since we were born we have weakness in our muscles, we can't run quickly or lift weights.
Symptoms: Very Weak Vision Sight, Hairy, Muscle Weakness, Late puberty, Limit in breathing and short breathe, dreuling during sleep, bent back, big belly, man breasts, narrow shoulders, small hands, weak teath, get tired fast, breathe stinks, Very smart in life and academically with best grades and Low growth hormone (we are so short for our ages ) also weak bones and small ones.

Can any 1 help us please with defining that syndrome and how to diagnose it, I went to all doctors in egypt and no 1 knew anything about it. We can walk and we got no mentality retardation. We have done all the tests that doctors asked for. i will post a pic later of us. so please any 1 that could help post here.

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77 Replies:

  • if its possible that a doctor could help us that would be great, as doctors in Egypt couldn't help us.
    Anonymous 42789 Replies Flag this Response
  • any 1 who could help tell me please.
    Anonymous 42789 Replies Flag this Response
  • We were born like that. At the time we were born there was no cell phones around. Any other explanations or is it a syndrome that can be diagnosed ?
    Anonymous 42789 Replies Flag this Response
  • Have you or your bother had a muscular biopsy? Can you walk normally? Does it get worse as you age? Is it painful? How is your nutrition? Please list all tests and their results.
    Harmonium 322 Replies Flag this Response
  • If you do decide to list all test and results, please be aware that by posting them on the internet, you give up some rights to privacy. If you are a minor, ask your parents before doing this.
    Harmonium 322 Replies Flag this Response
  • Have you or your bother had a muscular biopsy? Can you walk normally? Does it get worse as you age? Is it painful? How is your nutrition? Please list all tests and their results.Yes, Yes, No, No , Good Normal.I will list all the tests in abit so you would know and help me.
    Anonymous 42789 Replies Flag this Response
  • my brother did these tests:1- Growth Hormone Test:- Before Stimulation: 3.43 After Stimulation: 1.9 AGE: 16 (Not normal)2- Knees and Wrists Test: Wrist And Knee joints spaces are preserved AGE:173- CPK: 157 (Normal) AGE: 164- Platelets : Normal 5- FSH: 2.2 (NORMAL) 6- Prolactin: 3.2 (Within Normal)7- TSH Ultra sensitive: 2.268- Parathyroid Hormone: 132.1 ( TOO HIGH) Its range 12-72 = normal9- Free T3: 4.1 (NORMAL)10- Free T4: 0.9 (NORMAL11- Free Testosterone: 2.30 (Low)12- Blood Glucose: 7513- LH: 3.0 (Normal)14- Complete blood picture: All are normal15- Red cell indices: Normal16- Platelets count: 209.30 (Normal)17- Therum calcium: 4.2 Range: 4.4-5.2 (AGE:18)18- Ionised Calcium CA++ :1.25 Actual CA++19- Therum Phosphorus: 4.7 Range = 2.0-5.120- Parathyroid Again: 183.0 which is very high21- ECHOCARDIOGRAPHIC: Normal but there is chest defformity, heart is shifted to right (Depressed Sternum)I will post pictures of us if needed, or any tests you would like us to do. So if you please could tell us something to help us.
    Anonymous 42789 Replies Flag this Response
  • Well, do you masturbate? Is so that might be it. Also if you guys drink or do drugs or anything like that that might be it. Your diet, try eating more raw green veggies. Other than all that, it's really hard to say.
    Paulppaul 25 Replies Flag this Response
  • Well, do you masturbate? Is so that might be it. Also if you guys drink or do drugs or anything like that that might be it. Your diet, try eating more raw green veggies. Other than all that, it's really hard to say.No we don't drink or do drugs or masturbate. as i said before we were born like that. we do not do anything like that. Any idea if it is a syndrome that already exists or a new syndrome that should be researched ? i hope that it could be solved by any of you guys as i almost went to all doctors in Egypt but no one knew. We Can walk we got no pain but we can't do excercises or run or lift some weights Weakness.
    Anonymous 42789 Replies Flag this Response
  • What is your weight to height ratio? Are your hands and/or feet large for your body? Was there a problem with your birth or that of your brother? Do any other family members experience similar symptoms? I assume that the spinal deformity is kyphosis? Do you also have lordosis? Do you and your brother have the exact same symptoms? What medications are you on and for how long? Do you receive shots for the low growth hormone? Meds for the thyroid dysfunction? Please list. I'm obviously thinking the pituitary gland is involved. Have you had an MRI to check it? What have the doctors you have seen suggested? Hypothalmopituitary dysfunction? Even toxoplasmosis (congenital)? There is a disorder, congenital, called Prader-Willi Syndrome. It is very rare. But, you seem to have most if not all of the symptoms (not the cognitive ones, those can be independent!). You can google it and see what you think. At the very least, you sound to me (I'm not a doctor--yet!) like you have some sort of hypopituitarism. It's even possible to me that this could be some sort of autoimmune issue with the pituitary or a tumor on the pituitary (more common). I'm sorry I can't help you further. You really need to go see an endocrinologist. Is that possible for you? There are also some really good docs on this site. Keep bumping your post up to the top so that Dr. Cottle or Dr. Wayne can see it. Best to you, I really wish I could be of more help but I am just not qualified to assist you further. I would bet the docs here can help. P.S. I just read a post that was written while I was composing this and I must STRONGLY disagree that masturbation can cause this sort of problem. It's not possible; masturbation is perfectly normal and will not result in disease!!! Shame on you, Paulppaul--please don't go scaring the young man with foolishness!!
    Harmonium 322 Replies Flag this Response
  • What is your weight to height ratio? Are your hands and/or feet large for your body? Was there a problem with your birth or that of your brother? Do any other family members experience similar symptoms? I assume that the spinal deformity is kyphosis? Do you also have lordosis? Do you and your brother have the exact same symptoms? What medications are you on and for how long? Do you receive shots for the low growth hormone? Meds for the thyroid dysfunction? Please list. I'm obviously thinking the pituitary gland is involved. Have you had an MRI to check it? What have the doctors you have seen suggested? Hypothalmopituitary dysfunction? Even toxoplasmosis (congenital)? There is a disorder, congenital, called Prader-Willi Syndrome. It is very rare. But, you seem to have most if not all of the symptoms (not the cognitive ones, those can be independent!). You can google it and see what you think. At the very least, you sound to me (I'm not a doctor--yet!) like you have some sort of hypopituitarism. It's even possible to me that this could be some sort of autoimmune issue with the pituitary or a tumor on the pituitary (more common). I'm sorry I can't help you further. You really need to go see an endocrinologist. Is that possible for you? There are also some really good docs on this site. Keep bumping your post up to the top so that Dr. Cottle or Dr. Wayne can see it. Best to you, I really wish I could be of more help but I am just not qualified to assist you further. I would bet the docs here can help. P.S. I just read a post that was written while I was composing this and I must STRONGLY disagree that masturbation can cause this sort of problem. It's not possible; masturbation is perfectly normal and will not result in disease!!! Shame on you, Paulppaul--please don't go scaring the young man with foolishness!!60 KG : 159 CM, No they're very small, No, No, Yes, Yes, Nearly everything but my brother has kyphosis and i don't, Thomatropin (check spelling) 3 months for growth hormone, Yes, No, They are confused and went to lots of doctors and all of them didn't know what to say. About the Prader-willi syndrome, most are right but about the obesity and the sexual organs they aint right. Thanks for your reply hope you all the best and become a famous doctor thanks very much. If you found any thing else please tell me.
    Anonymous 42789 Replies Flag this Response
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  • Thanks for answering my questions and the kind wishes! :DYou didn't mention if they have checked for a pituitary tumor? I'm assuming you have parathyroid tumors because of the blood results. It's possible you have others (most likely benign) as well. Check out multiple endocrine neoplasia. Maybe you will find some answers with this. Again, I really hope one of the fine docs around here sees your post. Best wishes to you and your family.
    Harmonium 322 Replies Flag this Response
  • Thanks for answering my questions and the kind wishes! :DYou didn't mention if they have checked for a pituitary tumor? I'm assuming you have parathyroid tumors because of the blood results. It's possible you have others (most likely benign) as well. Check out multiple endocrine neoplasia. Maybe you will find some answers with this. Again, I really hope one of the fine docs around here sees your post. Best wishes to you and your family.this is the only thing we did not do because we worried if it is dangerous? or is it safe and what are tests i can do so i can check it out? you are really giving me hope that i can find out the reason and i can be normal, thanks for fast reply thanks very much.
    Anonymous 42789 Replies Flag this Response
  • A MRI (magnetic resonance imagining) can check you for a pituitary tumor. I would recommend a full-body scan in your case-- a CT or MRI. The CT can make cancer happen more readily but it's not all that likely, an MRI has no harm to the body. If you can find a Functional MRI (specific type of MRI) for your brain, that would be good. Also, genetic testing in your case would most likely yield results as both you and your brother have pretty much the same condition (meaning whatever is causing this is inherited/genetic). This can be expensive and sometimes you have to go to a major university or hospital in order to receive it. Most regular docs don't do it in my area. I really, truly think it would provide you with answers. I think you can find out the reasons for your condition(s?) and treat the symptoms. I'm very sorry to say that some of your symptoms are permanent, like the sternum depression. But I would bet with treatment, you feel much better and can have a 'normal' life. Normal is all relative, remember!! :) You may also be able to prevent this from getting worse....treatment and diagnosis are key. Don't stop until you find the answers!!!
    Harmonium 322 Replies Flag this Response
  • A MRI (magnetic resonance imagining) can check you for a pituitary tumor. I would recommend a full-body scan in your case-- a CT or MRI. The CT can make cancer happen more readily but it's not all that likely, an MRI has no harm to the body. If you can find a Functional MRI (specific type of MRI) for your brain, that would be good. Also, genetic testing in your case would most likely yield results as both you and your brother have pretty much the same condition (meaning whatever is causing this is inherited/genetic). This can be expensive and sometimes you have to go to a major university or hospital in order to receive it. Most regular docs don't do it in my area. I really, truly think it would provide you with answers. I think you can find out the reasons for your condition(s?) and treat the symptoms. I'm very sorry to say that some of your symptoms are permanent, like the sternum depression. But I would bet with treatment, you feel much better and can have a 'normal' life. Normal is all relative, remember!! :) You may also be able to prevent this from getting worse....treatment and diagnosis are key. Don't stop until you find the answers!!!i will not surrender, thanks too much for telling me an important thing about the gland, i googled it and i found things that are in us in the symptoms! i have done ECG and the doctor said that my heart beats are so fast even at rest. thanks so much again for your replies that helped me. i will definitely go do the test as parathyroid is too high.
    Anonymous 42789 Replies Flag this Response
  • thanks alot to harmonium for helping me, any other comments from doctors are welcomed for any other doctors' thoughts.
    Anonymous 42789 Replies Flag this Response
  • You are very welcome. I do hope the docs around here chime in for you on this.....but I need to clarify that I am not a doctor. I am a licensed massage therapist and a medical student. :DGood luck, I hope you find some answers!!
    Harmonium 322 Replies Flag this Response
  • You are very welcome. I do hope the docs around here chime in for you on this.....but I need to clarify that I am not a doctor. I am a licensed massage therapist and a medical student. :DGood luck, I hope you find some answers!!to be honest you are talking like a doctor and you know well and you helped me really. you helped me more than famous doctors here in Egypt, they just said "What do you think it would be"
    Anonymous 42789 Replies Flag this Response
  • At first I was thinking somr form of muscular dystrophy,but I'm not so sure with your lab abnormalities.Can you see a geneticist there?
    richard wayne2b 1232 Replies Flag this Response
  • I think I've figured one thing out:your calcium level is a bit low,causing your parathyroid hormone level to be high.I bet you have some syndrome thatI've never heard of.
    richard wayne2b 1232 Replies Flag this Response
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