This Is MS Multiple Sclerosis Knowledge & Support Community

I suggest and I’m begging you to create a site where the symptoms can be enumerated and possible diagnoses can be given. That would be a great help to both the patient and the doctor and your site will surely increase in popularity. I'm suffering from sleep deprivation eversince my accident last 6Sep03 which left me deaf and disabled (because I'm not able to balance probably because I’m deaf). I think a brain trauma resulted in having to suffer what the neurologist in the Philippines termed as myoclonus where I couldn't control my right hand. Although I could control my left hand, I couldn't control the tips of my fingers that's why I eat like a pig. I've undergone Occupational Therapy in 2 hospitals in the Philippines but I feel it's not helping me for the Therapist just tells me to relax. I asked myself, is this how you conduct Occupational Therapy to your patients where you just tell them to relax to achieve control? I feel using Psychology to cure something Physiological is inappropriate. What is happening to me is purely Physiological. That's why my Father and I researched the internet often. There's one drug that my dad researched and the doctor heeded, it's called Piracetam (generic name Nootropil). It helped a great deal to reduce the shaking, but after a while, its effects weren't as dramatic. I think my body has developed immunity which I also read holds true. I’ve taken a drug my dad researched for Myoclonus called Sodium Valproate whose side-effect is that it makes you feel drowsy, I thought this was what I needed for I'm not getting enough sleep. There are times when I couldn't sleep at all. I’ve read in the internet that lack of sleep is not age-related (which is a common misconception) but a symptom, so that what is happening to me is most likely related to my accident. I’ve taken Clonazepam (which I read was the first drug of choice for Myoclonus) for quite a while but it doesn't seem to work.
Before when I would attempt to button my blouse my nail bled and my right fingers would hurt. But I think thru constant practice and the right medication this doesn't occur anymore.
I was prescribed an anti-depressant to deal with my sleep disorder but it didn’t work. My current neurologist doubled the dosage combined with an anti-epileptic/anti-myoclonus drug and after 2 days I took a medication for Parkinson’s she also prescribed and this caused me to fall asleep earlier (really fall asleep) although I still wake up early, I still could not control my hands, and this effect lasted only 2 days.
People think my problem is not a big deal, but it’s really bothersome for me, because even if my eyes are really sore, I still couldn’t fall asleep.

sorry to hear about all that you're dealing with...you may want to check out a sleep disorders center...it sounds as if you are in the philippines...if so, here are 2 i found online...

best of luck,

TOL


* Sleep Disorders Center, Makati Medical Center, Makati City, Phillipines. Tel: 632-8159911
* Comprehensive Sleep Disorders Center, St. Lukes Medical Center, Quezon City, Philippines. Tel 632-727-5559

thinkingoutloud86 wrote:sorry to hear about all that you're dealing with...you may want to check out a sleep disorders center...it sounds as if you are in the philippines...if so, here are 2 i found online...

best of luck,

TOL


* Sleep Disorders Center, Makati Medical Center, Makati City, Phillipines. Tel: 632-8159911
* Comprehensive Sleep Disorders Center, St. Lukes Medical Center, Quezon City, Philippines. Tel 632-727-5559

Thanks for taking the time. But I feel though when I'm given the right medication to be able to control my hands, this will enable me to sleep well, because when I was prescribed a medication for Parkinson's (though I'm not suffering from it), I really fell asleep much earlier, although I still wake up early, I still could not control my hands, and this effect lasted only 2 days, so I plan to get back to my neurologist. That's why I'm suggesting to set up that kind of website. My neurologist wasn't expecting that medication to have that impact on my sleep disorder that's why I thought of making this suggestion. I know it could be done thru the internet for searches that led me to this website was made possible.

pain wrote:I suggest and I’m begging you to create a site where the symptoms can be enumerated and possible diagnoses can be given. That would be a great help to both the patient and the doctor and your site will surely increase in popularity. I'm suffering from sleep deprivation eversince my accident last 6Sep03 which left me deaf and disabled...

Thanks for sharing your experience. I hope that I'm not misunderstanding you but unfortunately I think that what your are requesting is beyond the stated mission parameters for the ThisIsMS site.

This is MS is an unbiased, unaffiliated site dedicated to eradicating Multiple Sclerosis. We offer an open-minded approach to *all* potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone to alternative treatments such as Low Dose Naltrexone.

You may be able to find someone sharing a similar experience on ThisIsMS' sister site http://www.experienceproject.com, for example, http://www.experienceproject.com/groups.php?c=health.

NHE

NHE wrote:

pain wrote:I suggest and I’m begging you to create a site where the symptoms can be enumerated and possible diagnoses can be given. That would be a great help to both the patient and the doctor and your site will surely increase in popularity. I'm suffering from sleep deprivation eversince my accident last 6Sep03 which left me deaf and disabled...

Thanks for sharing your experience. I hope that I'm not misunderstanding you but unfortunately I think that what your are requesting is beyond the stated mission parameters for the ThisIsMS site.

This is MS is an unbiased, unaffiliated site dedicated to eradicating Multiple Sclerosis. We offer an open-minded approach to *all* potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone to alternative treatments such as Low Dose Naltrexone.

You may be able to find someone sharing a similar experience on ThisIsMS' sister site http://www.experienceproject.com, for example, http://www.experienceproject.com/groups.php?c=health.

NHE

Thanks for sharing the sister sites. But I've made various searches on my condition and I came across this website and I don't know why. But since there's a forum where you can make suggestions, I thought to post this via copy-paste. After all, it boils down to a neurological condition. What I wanted was to be able to create and post a topic.

I made various searches and posts to various forums so that I may be able to share my ideas and hopefully may generate the interest of a web programmer perhaps? I just find it such a pity that the power of the internet is not being maximized for the purpose of diagnosis. Since I observe that there seems to be a general fear to self-diagnosis, I thought that access to the website that will implement this suggestion be limited and make the referral field in the registration section a requirement. There is already a website like what I had in mind but is limited to one symptom and quite complex, so I know it’s possible and just needs enhancement. Financing of this suggestion can be done if they are coursed thru medical institutions. I foresee that this suggestion will benefit tremendously both the patient and the doctor. It would limit the trial and error phase and lessen the frustration of both doctor and patient. I don't see it coming soon, so it wouldn't benefit me, but maybe in the near future, for setting up that kind of website will greatly enhance the field of medicine, mainly neurology, for the brain is a very complex organ.