Discussions By Condition: I cannot get a diagnosis.

urgent treatment for medulla oblongata disease

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: hiten79
  • February 26, 2009
  • 00:44 PM

Respected Sir/Madam;

I am Mr.Hiten Thakker from Mumbai born in year 1979. I am into business of imports since last several years. I am writing to you for one of my cousin brother who is just 4 years elder than me and he is going through some extremely strange disease in medulla oblongata as said by some of the top ranking nerologist in India, and as said by them is uncurable and no Dr's are taking case in their hand, may be due to their namesake.

Due to this disease my brother is now not able to even get up from his bed and his complete body is shivering and not at all in his control. This started almost 3 years before with shivering of his hand. But not taking this quite seriously and taking treatment from local pediatrician, made this case worst we could imagine.

As said it started 3 years back with shivering of hand, later his legs, 5months later his neck, next 7 months his entire body started shivering and shaking out of control.Now the stage is where he is not even able to speak properly, and his spoken sentences elongates like for example if he wants to speak my name"HITEN" than from him it comes like "HHHHHHHHHIIIIIIIIIIIIITTTTTEEEEENNNNNNNN"

With complete hope that you would guide me to get his health back to normal, atleast upto extent where he would be able to leave his life on his own, i request you from bottom of my heart to support me in finding perfect source where specialist Nuerlogists and Doctors would study and accept this case and would get satisfying result.

I would really really appreciate and would give you lots of blessings if you can please guide me,as none of us are able to see his condition and all of us are dying thousand times seeing him in this condition.

About spending we really would not mind the amount, as i am completely sure that any of you would take this case as bit personally and be reasonable.Just we want my brother to be fit as he was just 3 years before.

Reply Flag this Discussion

9 Replies:

  • I am sorry to be the one to tell you this Hiten, but I have looked through internet resources, and it seems there is no treatment for it. It seems that nothing can be done (at least to my knowledge) to help him. I'm sorry. I hope that I'm wrong and someone else on this site has heard of something I am unaware of and unable to find. I wish you the best.
    davidmt1 11 Replies
    • February 27, 2009
    • 04:54 AM
    • 0
    Flag this Response
  • Thanks very much mr. David. I appreciate your kind efforts to help me in curing my brother's disease. And i hope our efforts would bring some miraculous change in him. Thanks again
    hiten79 4 Replies
    • February 27, 2009
    • 10:49 AM
    • 0
    Flag this Response
  • I'm sorry about your brother.There's a neurologist on this forum who could provide you with much-needed edification.His name is Dr Cottle.I'll try to reach him for you,but you can post a thread directly to him,just as you posted the one I"m replying to.
    richard wayne2b 1232 Replies
    • February 27, 2009
    • 01:03 PM
    • 0
    Flag this Response
  • Dear Richard Wayne....i am really thankful for your advice which is really very prescious & thanks a ton for your regards. I will immediately post a new thread to Dr Cottle, meanwhile i would request if you can too pass my message to him.If he needs i can email entire reports scanned copies to him.Thanks again
    hiten79 4 Replies
    • February 27, 2009
    • 04:21 PM
    • 0
    Flag this Response
  • Dear Richard Wayne..Soory to trouble you again, but i just searched for your sufggested neurologist in this forum that is Dr. Cottle, but am not able to find him. Can you please pass my message about my brother's serious condition to him.]I am really thankful for your kind and generous help.
    hiten79 4 Replies
    • February 27, 2009
    • 04:35 PM
    • 0
    Flag this Response
  • Hi hiten, Dr Cottle is a member on the forum so you wouldn't be able to find him as such, he will be along hopefully soon, so be patient, you could post another thread directly for him here on the forum or just wait as he will see this thread, we can keep it high on the list of "todays post" so he wont miss it. I don't know anything about your brothers condition but I do hope your brother can be helped & recover. Best wishes to you all......:) Actually, Dr Richard Wayne has already posted Dr Cottle a thread regarding this to ensure he does see it.
    Tootsie 628 Replies
    • February 27, 2009
    • 05:00 PM
    • 0
    Flag this Response
  • Dear Tootsie...Thanks a ton for your generous help, and i really appreciate your effort for my brother's recovery from extremely severe health issue by putting my thread on top & prevail chances to be viewed by Dr.Cottle and other neurologist who can help us in this case.
    hiten79 4 Replies
    • February 27, 2009
    • 05:10 PM
    • 0
    Flag this Response
  • Thought I should also say, Dr Cottle was on here earlier so it might be a while before he returns, so don't worry he will see it. again, Best wishes.......:)
    Tootsie 628 Replies
    • February 27, 2009
    • 05:34 PM
    • 0
    Flag this Response
  • Hello Hiten, I've read your inquiry. My initial question would be whether his doctor specifically mentioned the term olivopontocerebellar atrophy. This would be the closest differential diagnosis that comes to mind when reviewing the symptoms observed in your brother. Olivopontocerebellar atrophy of a certain type very often penetrates into the olives of the medulla oblongata. The initial onset of symptoms with this disease can vary greatly, but in general there is a gradual and progressive loss of muscle coordination and control, that extends to produce both dysarthric and dysphonic speech such as described by you. In this context, patients with OPCA of this type that involves speech appear to be pushing very hard to speak words with a great deal of strain that results in a very slowed and forceful pronunciation. The primary source of degeneration which is producing most of the observable symptoms is actually originating in the cerebellum. Further involvement of the medulla oblongata results in rather severe dysautonomia, since this area of the brain regulates autonomic function. His age at onset and the symptoms described, in the absence of any known causal factors such as intracerebral stroke or paraneoplastic process, would suggest it to be familial in the way of genetic mutation of a recessive nature. Having said that, I would ask first whether any extended family members have ever demonstrated any lesser degree of symptoms observed in your brother regardless of how mild, and secondly whether a paraneoplastic screen was performed as part of the diagnostic procedures performed? A duration of 3 years would make parneoplastic concerns a bit remote, but nevertheless warrants testing in his case. If you'd care to post test data or provide an anonymous email address, I will provide you with a source to forward any available tests or imaging data you may wish to share for evaluative purposes. Please realize, however, that I am fully retired and no longer practice neurology. Additionally, if you post test results to the forum, please take great care in first redacting any identifying information due to the fact that it's a public forum and would forego his rights to privacy in some regard. I will do what I can to assist you. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • February 28, 2009
    • 00:00 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.