Discussions By Condition: I cannot get a diagnosis.

21 year old, unable to get diagnosis, now mobility and speech impaired, doublevision

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • August 10, 2010
  • 10:50 AM

Hi there,

I have an older brother who is 21 years old, over a year and a half ago (early January 2009) he started experiencing double vision in his eyes, the optometrist didn't know why and put a prism lens on his glasses to correct his site. A few months later he developed a nasty rash on both of his arms, and he started getting tremors in both his arms and legs, gradually not long after his balance was affected and he couldn't walk straight with the need of assistance, his foot would drag on the ground, he had trouble getting up when sitting down and needed help also, his posture was stiff and informal/lazy with an unusual gait. He would always have flem in his throat and excess saliva in his mouth which he always needed to spit out, at night he would have choking fits, because of the stringy thick saliva which has to be sucked or spat out. His personality changed mentally, and he was a different person, he was oversensitive, got upset easily and acted kiddish at some points, he was depressed, paranoid, unmotivated and was very forgetful. His voice and laughter was weak and he started to experience speech impairment, as it was slurred and he soon chose not to speak at all. Also short-term memory loss and also loss a lot of weight. He had trouble urinating and excreting waste. He was always tired and always closed his eyes. Continuously for months his condition got worse and he had to rely on my parents to be feed, changed and bathed. He could walk a little be with a walker-frame if someone was holding him.. but now it has come to a point where he needs to be lifted from one place to another, also the muscles in his hand and feet have tightened causing them to bend inwards and closely grasped.

Originally i had thought it was MS when i did research, all his symptoms matched up to it although the doctors said that in the MRI, his brain did not show signs of this. Then there was other diseases that i looked up such as Stiffman's disease, Parkinson, Alzheimers, etc. I also suspected possibly having small tumours in the brain, which cant be seen through scans, there is definitely something neurologically wrong, something in his brain, nerves that have been dislodged.. that has caused problems in his neuron motor and affected the function and recieptance of messages passed from the brain to the body to move certain parts of his body and to perform normal every day activities. All of his thousands of tests that have been done and sent to America, Australia, UK etc have apparently shown no abnormalities. Including blood and MRI scans...

Doctors in NZ havnt been able to help or diagnose him so PLEASEEEEE, can you help my brother, or refer me to someone who has great knowledge of this kind of illness. It is slowly taking my brothers life as well as my whole family's and I am in desperate need of getting a lead and diagnosis so that my brother could quickly receive treatment and get better. It has been a year and a half too long, and i would appreciate any help that i could get..

Thankyou

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9 Replies:

  • Did they check for Lyme disease or mercury poisoning. I've heard of something somewhat similar happening to a 20 year old young woman (similar symptoms, doctors bing unable to diagnos her), and I have to say the outcome wasn't good. The rash is somewhat of a curveball. I should think that would be able to help narrow down the possible illnesses. I really hope everything works out for your brother, I really do. Hi there, I have an older brother who is 21 years old, over a year and a half ago (early January 2009) he started experiencing double vision in his eyes, the optometrist didn't know why and put a prism lens on his glasses to correct his site. A few months later he developed a nasty rash on both of his arms, and he started getting tremors in both his arms and legs, gradually not long after his balance was affected and he couldn't walk straight with the need of assistance, his foot would drag on the ground, he had trouble getting up when sitting down and needed help also, his posture was stiff and informal/lazy with an unusual gait. He would always have flem in his throat and excess saliva in his mouth which he always needed to spit out, at night he would have choking fits, because of the stringy thick saliva which has to be sucked or spat out. His personality changed mentally, and he was a different person, he was oversensitive, got upset easily and acted kiddish at some points, he was depressed, paranoid, unmotivated and was very forgetful. His voice and laughter was weak and he started to experience speech impairment, as it was slurred and he soon chose not to speak at all. Also short-term memory loss and also loss a lot of weight. He had trouble urinating and excreting waste. He was always tired and always closed his eyes. Continuously for months his condition got worse and he had to rely on my parents to be feed, changed and bathed. He could walk a little be with a walker-frame if someone was holding him.. but now it has come to a point where he needs to be lifted from one place to another, also the muscles in his hand and feet have tightened causing them to bend inwards and closely grasped. Originally i had thought it was MS when i did research, all his symptoms matched up to it although the doctors said that in the MRI, his brain did not show signs of this. Then there was other diseases that i looked up such as Stiffman's disease, Parkinson, Alzheimers, etc. I also suspected possibly having small tumours in the brain, which cant be seen through scans, there is definitely something neurologically wrong, something in his brain, nerves that have been dislodged.. that has caused problems in his neuron motor and affected the function and recieptance of messages passed from the brain to the body to move certain parts of his body and to perform normal every day activities. All of his thousands of tests that have been done and sent to America, Australia, UK etc have apparently shown no abnormalities. Including blood and MRI scans... Doctors in NZ havnt been able to help or diagnose him so PLEASEEEEE, can you help my brother, or refer me to someone who has great knowledge of this kind of illness. It is slowly taking my brothers life as well as my whole family's and I am in desperate need of getting a lead and diagnosis so that my brother could quickly receive treatment and get better. It has been a year and a half too long, and i would appreciate any help that i could get.. Thankyou
    Anonymous 42789 Replies
    • August 11, 2010
    • 02:27 AM
    • 0
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  • Was he tested for Creutzfeldt-Jakob disease ?
    Anonymous 42789 Replies
    • August 11, 2010
    • 06:58 AM
    • 0
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  • Hi, sorry to hear about your brother. I know of an illness which can present as your brothers has. Does light at times hurt your brothers eyes?? Does he also get pain at times.. body pain.. headaches etc? I think he probably has a lot of other symptoms with the illness you didnt put down. I think he has what i myself have.. and I get over 87 different symptoms with it. I suggest without making any judgements till you read about it.. Go to http://www.hfme.org/mevsms.htm and scroll down the page till you get to the 2 different illnesses comparision graphs and i think you will see one does fit your brother (your MS thoughts were close). Then check out the whole site as it will give you a good idea of the whole illness and situation world wide. Its all a political kind of illness as the health insurance companies and goverments want this illness to go away as its such a costly illness.. studies have shown that patients with it can be sicker then congestive heart failure patients.. and as sick as an AIDS patient 2 weeks from death. Some patients are like that years and years.. I know some who have had it for over 30 years. The illness which can put one like close to death but never usually kills you. Often completely disabling. Many of the world governments have tried to make this illness disappear or have played down its severity.......... Then I suggest to then go to http://aboutmecfs.org/ and check out the info there (hope is there). Thou remember that your brother is one of the severe ones with this illness so those on the forums arent right now as sick as your brother is. From there once you've educated yourself about the illness.. track down a specialist in this to see what can be done currently to help your brothers condition. Sorry right now there is no cure.. but hopefully very soon there will be more drugs available for it. Best luck
    taniaaust1 2267 Replies
    • August 12, 2010
    • 11:22 AM
    • 0
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  • http://forum.notcrazy.net/index.php?topic=3275.0 That was written some time back now and talks about all the different symptoms i have with this illness.
    taniaaust1 2267 Replies
    • August 12, 2010
    • 11:34 AM
    • 0
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  • Subacute sclerosing Panencephalitis
    Anonymous 42789 Replies
    • February 17, 2011
    • 07:30 PM
    • 0
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  • m sorry to hear bout your brother .. i think SSPE fits in...at the same time...speech impairment , change of gait , loss of balance , unable to get up from sitting posture (truncal ataxia) ..above symptoms point at some lesion in cerebellum...pls get a high resolution CT scan done n consult a neurologist .. MIDLINE cerebellar lesions are rare n many physicians miss it cos it wont be seen on CT in initial stages..let me know d progress.. god bless ...
    arjun4mb 80 Replies
    • February 18, 2011
    • 04:21 AM
    • 0
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  • It's obviously a brain problem. Possibly a cerebrovascular condition. See the symptoms here ---> http://www.wrongdiagnosis.com/c/cerebrovascular_conditions/symptoms.htmI wish him the best! Good luck!
    gr8tful 175 Replies
    • February 18, 2011
    • 05:14 AM
    • 0
    Flag this Response
  • Hi there, I have an older brother who is 21 years old, over a year and a half ago (early January 2009) he started experiencing double vision in his eyes, the optometrist didn't know why and put a prism lens on his glasses to correct his site. A few months later he developed a nasty rash on both of his arms, and he started getting tremors in both his arms and legs, gradually not long after his balance was affected and he couldn't walk straight with the need of assistance, his foot would drag on the ground, he had trouble getting up when sitting down and needed help also, his posture was stiff and informal/lazy with an unusual gait. He would always have flem in his throat and excess saliva in his mouth which he always needed to spit out, at night he would have choking fits, because of the stringy thick saliva which has to be sucked or spat out. His personality changed mentally, and he was a different person, he was oversensitive, got upset easily and acted kiddish at some points, he was depressed, paranoid, unmotivated and was very forgetful. His voice and laughter was weak and he started to experience speech impairment, as it was slurred and he soon chose not to speak at all. Also short-term memory loss and also loss a lot of weight. He had trouble urinating and excreting waste. He was always tired and always closed his eyes. Continuously for months his condition got worse and he had to rely on my parents to be feed, changed and bathed. He could walk a little be with a walker-frame if someone was holding him.. but now it has come to a point where he needs to be lifted from one place to another, also the muscles in his hand and feet have tightened causing them to bend inwards and closely grasped. Originally i had thought it was MS when i did research, all his symptoms matched up to it although the doctors said that in the MRI, his brain did not show signs of this. Then there was other diseases that i looked up such as Stiffman's disease, Parkinson, Alzheimers, etc. I also suspected possibly having small tumours in the brain, which cant be seen through scans, there is definitely something neurologically wrong, something in his brain, nerves that have been dislodged.. that has caused problems in his neuron motor and affected the function and recieptance of messages passed from the brain to the body to move certain parts of his body and to perform normal every day activities. All of his thousands of tests that have been done and sent to America, Australia, UK etc have apparently shown no abnormalities. Including blood and MRI scans... Doctors in NZ havnt been able to help or diagnose him so PLEASEEEEE, can you help my brother, or refer me to someone who has great knowledge of this kind of illness. It is slowly taking my brothers life as well as my whole family's and I am in desperate need of getting a lead and diagnosis so that my brother could quickly receive treatment and get better. It has been a year and a half too long, and i would appreciate any help that i could get.. ThankyouHave any tests shown any abnormalities at all?Even if only slight?Has he had a nerve conduction study?
    wdiagnosis1 33 Replies
    • February 22, 2011
    • 07:26 PM
    • 0
    Flag this Response
  • Hi there, I have an older brother who is 21 years old, over a year and a half ago (early January 2009) he started experiencing double vision in his eyes, the optometrist didn't know why and put a prism lens on his glasses to correct his site. A few months later he developed a nasty rash on both of his arms, and he started getting tremors in both his arms and legs, gradually not long after his balance was affected and he couldn't walk straight with the need of assistance, his foot would drag on the ground, he had trouble getting up when sitting down and needed help also, his posture was stiff and informal/lazy with an unusual gait. He would always have flem in his throat and excess saliva in his mouth which he always needed to spit out, at night he would have choking fits, because of the stringy thick saliva which has to be sucked or spat out. His personality changed mentally, and he was a different person, he was oversensitive, got upset easily and acted kiddish at some points, he was depressed, paranoid, unmotivated and was very forgetful. His voice and laughter was weak and he started to experience speech impairment, as it was slurred and he soon chose not to speak at all. Also short-term memory loss and also loss a lot of weight. He had trouble urinating and excreting waste. He was always tired and always closed his eyes. Continuously for months his condition got worse and he had to rely on my parents to be feed, changed and bathed. He could walk a little be with a walker-frame if someone was holding him.. but now it has come to a point where he needs to be lifted from one place to another, also the muscles in his hand and feet have tightened causing them to bend inwards and closely grasped. Originally i had thought it was MS when i did research, all his symptoms matched up to it although the doctors said that in the MRI, his brain did not show signs of this. Then there was other diseases that i looked up such as Stiffman's disease, Parkinson, Alzheimers, etc. I also suspected possibly having small tumours in the brain, which cant be seen through scans, there is definitely something neurologically wrong, something in his brain, nerves that have been dislodged.. that has caused problems in his neuron motor and affected the function and recieptance of messages passed from the brain to the body to move certain parts of his body and to perform normal every day activities. All of his thousands of tests that have been done and sent to America, Australia, UK etc have apparently shown no abnormalities. Including blood and MRI scans... Doctors in NZ havnt been able to help or diagnose him so PLEASEEEEE, can you help my brother, or refer me to someone who has great knowledge of this kind of illness. It is slowly taking my brothers life as well as my whole family's and I am in desperate need of getting a lead and diagnosis so that my brother could quickly receive treatment and get better. It has been a year and a half too long, and i would appreciate any help that i could get.. ThankyouHi,Is your brother Rh-Negative or are any of your other family members Rh-Negative Blood Types? Has anyone ever tested him to see if he is HLA-B27 positive? If you google Rh Negative Autoimmune - you will find my site and research.Good Luck - hope this helps open up a new avenue to explore.
    thefarrellfam 46 Replies
    • February 26, 2011
    • 05:58 AM
    • 0
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