Discussions By Condition: I cannot get a diagnosis.

Donating My Body to Science ... Under Consideration

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: neurotransmissing
  • April 22, 2009
  • 07:08 AM

Since my condition (PML) is rare ... I was wondering if it would be helpful to donate my body to science.

How does one go about finding more information about this? Once gone, I won't need this body anyway ... I will have a brand new one ... better, and MOST beautiful.

;)

Seems this could benefit someone ... if not to find out more about PML, to learn how these manifestations appear in the brain and body. Or simply to teach medical students the basics? Perhaps they don't need donations of deceased persons, or only specific ones. I may not even be a candidate.

As for my family and loved ones, there would be a memorial service (without my body) and my body could go straight to the science lab (or whatever they refer to this place as); however, they (my family) are in support of this only as long as the remains are returned for burial when they complete whatever they like that could be helpful (and realize this may mean a long wait). If my family cannot have my remains returned to the final resting place of our choosing, they do not want me to follow through on this.

Also, I am an organ donor; I don't even know if they would want my organs now (PML? diseased?) ... but I am going to ask.

Does anyone have any information about how to go about finding out this information? I'll research if/as my time/energy allows, but while I'm here ... doesn't hurt to ask.

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16 Replies:

  • Since my condition (PML) is rare ... I was wondering if it would be helpful to donate my body to science. How does one go about finding more information about this? Once gone, I won't need this body anyway ... I will have a brand new one ... better, and MOST beautiful. ;) Seems this could benefit someone ... if not to find out more about PML, to learn how these manifestations appear in the brain and body. Or simply to teach medical students the basics? Perhaps they don't need donations of deceased persons, or only specific ones. I may not even be a candidate. As for my family and loved ones, there would be a memorial service (without my body) and my body could go straight to the science lab (or whatever they refer to this place as); however, they (my family) are in support of this only as long as the remains are returned for burial when they complete whatever they like that could be helpful (and realize this may mean a long wait). If my family cannot have my remains returned to the final resting place of our choosing, they do not want me to follow through on this. Also, I am an organ donor; I don't even know if they would want my organs now (PML? diseased?) ... but I am going to ask. Does anyone have any information about how to go about finding out this information? I'll research if/as my time/energy allows, but while I'm here ... doesn't hurt to ask.Hi neurotransmissing,You are a true GIVER, indeed! I'm in your corner re: making good use of parts no longer required. I call it the "ultimate recycle."Years ago, here in my area, several medical schools accepted the type of donation we're talking about. To the best of my knowledge they no longer do...unsure exactly why they've stopped.I'd say your best bet is to first contact medical schools throughout your state. Nothing ventured..., you know.Hope you have success, neurotransmissing.Best,John<
    JonMac 165 Replies Flag this Response
  • I think this is a fantastic idea, and I applaud your thinking here. Check out this website: http://www.biogift.org/index.htmlI'm saddened to hear your story, but I believe your remains can be put to great use. Thank you!
    Harmonium 322 Replies Flag this Response
  • Hi JonMac, I made calls and found two student hospitals here in my area, and one sounded very happy about my offer and is getting back to me about how to handle the concerns of my family. It sounds like they do cremation return the ashes when they complete what is found to be helpful. As for the donation of body parts, they may be able to use those as well ... but that needs to be looked into further as well (since most people carry the JC Virus and have it in their bodies dormant anyway -- so it may not be an issue). I understand that will probably depend on the progression and damage (organ damage to each); but they are looking into this further. A friend I know, his father, donated his body; it was returned. That's all I know though (no details), the death was only a few months ago ... I'm going go give him a call, although hesitant, he did mention it to me and brought it up initially, so I think he would be comfortable discussing it. If not, I understand ... but I think he would be open to discussing it. Thank you for your feedback.
    neurotransmissing 145 Replies Flag this Response
  • Harmonium, THANK YOU!!!! WOW!
    neurotransmissing 145 Replies Flag this Response
  • This doctor should be able to provide you with info:http://www.neurology.org/cgi/content/abstract/70/5/336Address correspondence to Dr. Richard M. Ransohoff, Lerner Research Institute NC-30, 9500 Euclid Avenue, Cleveland, OH 44195 ransohr@ccf.org Go for it, but why not begin while still here:clinical trials:neurologyclinicaltrials@biogenidec.com keep checking here:http://patientinfo.ninds.nih.gov/ National Organization for Rare Disorders (NORD)P.O. Box 1968(55 Kenosia Avenue)Danbury, CT 06813-1968orphan@rarediseases.orghttp://www.rarediseases.orgTel: 203-744-0100 Voice Mail 800-999-NORD (6673)Fax: 203-798-2291
    Monsterlove 2921 Replies Flag this Response
  • Did they give you any of these drugs?The boxed warning for the drug rituximab (Rituxan, co-marketed by Genentech BioOncology and Biogen Idec) includes that JC virus infection resulting in progressive multifocal leukoencephalopathy and death has been reported in patients treated with the drug .The boxed warning for the drug natalizumab (Tysabri, marketed by Elan and developed by Biogen Idec) includes that JC virus resulting in progressive multifocal leukoencephalopathy developed in three patients who received natalizumab in clinical trials.The boxed warning was added Feb. 19, 2009 for the drug efalizumab (Raptiva, marketed in the U.S. by Genentech, and marketed in Europe by Swiss drugmaker Merck Serono) includes that JC virus resulting in progressive multifocal leukoencephalopathy developed in three patients who received natalizumab in clinical trials. The drug was pulled of the U.S. market because of the association with PML on April 10, 2009. http://en.wikipedia.org/wiki/JC_virus
    Monsterlove 2921 Replies Flag this Response
  • Did they give you any of these drugs?The boxed warning for the drug rituximab (Rituxan, co-marketed by Genentech BioOncology and Biogen Idec) includes that JC virus infection resulting in progressive multifocal leukoencephalopathy and death has been reported in patients treated with the drug .The boxed warning for the drug natalizumab (Tysabri, marketed by Elan and developed by Biogen Idec) includes that JC virus resulting in progressive multifocal leukoencephalopathy developed in three patients who received natalizumab in clinical trials.The boxed warning was added Feb. 19, 2009 for the drug efalizumab (Raptiva, marketed in the U.S. by Genentech, and marketed in Europe by Swiss drugmaker Merck Serono) includes that JC virus resulting in progressive multifocal leukoencephalopathy developed in three patients who received natalizumab in clinical trials. The drug was pulled of the U.S. market because of the association with PML on April 10, 2009. http://en.wikipedia.org/wiki/JC_virus Monsterlove, thanks so much! I can't thank you all enough for this wonderful information, I so exhausted and weak!!! All I do is sleep! As for the drugs ... yes, my primary care provider does believe the JC Virus was activated and then incubated until I got PML. Rebif, Copaxone, and IV corticosteroids followed by Prednisone are believed to be the culprits. I was already immunosuppressed due to Hashimoto's Thyroiditis that was also being diagnosed during that time and was finally confirmed just following. I took Rebif (interferon) for a year; while injecting with Rebif, I took the corticosteroid/Prednisone twice ... shortly thereafter ... I had a horrible reaction to the Rebif (it actually caused "flares", seizures, tremors, and so forth ... about one hour following injection; also, the injection sites got huge and red with pain and itching). Due to my reaction, I was switched to Copaxone; I got no relief and the progression remained steady and slow. I went to another neurologist, because several other specialists questioned my diagnosis and did not believe I had MS; that neurologist agreed and immediately took me off of the Copaxone and said, "no more corticosteroids, etc." .... this is very atypical it is Multiple Sclerosis at all, and we do not believe you have Multiple Sclerosis. As my energy allows, I would really like to take the time to tell my story for others; being, my medical history, all the misdiagnosed possibilities, all the different meds, my symptoms, conditions, and so forth. It all began in 1996, and now I firmly believe that whatever I had going on was probably treatable and perhaps even curable ... simply, this was bad luck; I am at fault for taking the treatments immediately and not getting a second opinion (and now I would even get a third) when the first neurologist diagnosed me with Multiple Sclerosis. I was just so happy to finally have an answer ... I went ahead and took the treatments. I just got worse .... the treatments ceased, but it was too late. The JC Virus already had the upper hand. None of the above-mentioned medications sound familiar, but I now know that I have taken many and realize they were probably bad for my condition and worsened it. One I know of right now is called Tramadol and was prescribed for the horrible pain I'm in. My physician was absolutely disgusted upon finding that I was prescribed this medication ... which serves only to shut down my body and speed up the progression and cause death much sooner!! Hence, for pain, I am now on Morphine Sulf, 15 MG Tab @ one every 12 hours. It has made a tremendous difference in the way I feel ... the pain is now minimal and I'm finding I don't even need one every 12 hours! On the Tramadol, it was dangerous and helped very little; when it was at it's "peak effectiveness," I got only little relief; that neurologist (I was seeing two, and have now dumped the Tramadol one) could not be reached (all night, we called the exchange) ... and my pain was horrible! During the night, a Walgreens pharmacist was most helpful and told me I could take two Aleve two hours after taking the Tramadol, of which I was taking one every four hours ... killing myself and not even knowing it. In tears, when we finally reached spoke again to the operator at the after-hours exchange, at 3 AM, having no sleep due to the pain ... she said that the neurologist said, "Go to the hospital right now!" Well, knowing better ... and that he just did not want to help, we called the pharmacy instead and got the above-mentioned help by adding the Aleve. I'll add ... the neurologist was angry because he was disturbed at 3 AM ... but we had been calling his office during the day, during business hours, for three days!!! And began calling the exchange that night at 7:15 PM, and they couldn't reach him!! I don't understand why I was prescribed Tramadol, which didn't help at all, and the other doctors knew it would not and wondered as well .... disgusted. Maybe they are afraid if a lawsuit or something, so tried to help me "kick off" sooner ... I don't know. But I do know, that wouldn't be the neurologist at fault anyway ... so why would he care?! Unless they look out for one another or something. I'm not on a witch-hunt and wish to sue anybody; this is rare, 1% of the population gets this ... I was just unlucky and I don't "blame" the first neurologist; it's my own fault for not getting at least one more opinon. Based on the information available, I feel that first neurologist did the best she could ... and is not out to harm anybody, and liked me and all ... so I don't get any feeling she was "out to get me" or anything! These things just happen. I should have gotten another opinion; I was relieved and so tired of trying to find answers, I settled on the answer that made the most sense until it didn't anymore; and by then, it was too late. In retrospect though, I do question why the second most-recent neurologist prescribing me Tramadol. What could he have possibly been thinking? He had by diagnosis of PML from the other neurologist (that he send me to for the second opinion, seeing leukoencephalopathy) and it was confirmed ... further, as PML as was suspected. Do they protect one another??? I'm not after anyone.
    neurotransmissing 145 Replies Flag this Response
  • Just a bit more about being immunocompromised during that time. Also, I was extremely sleep-deprived and my circadian rhythm (sleep-wake cycle) was insane!! I was diagnosed with sleep apnea and put on a CPAP machine which helped somewhat, but did not alleviate the chronic fatigue. By the way, in 1996, prior to PML ... whatever I had, the chronic fatigue was the first symptom and depression was ruled out (I'll explain all that later as well). Secondly, I had an extremely stressful occupation ... and a bad marriage; my husband at the time was never home and I had the job, the home to run, and two boys to raise alone ... my ex-husband, sadly, still remains untreated for multiple addictions. In 2001, I finally collapsed and could no longer work; extreme exhaustion, seizures, numbness and tingling, sleep disorders, the list goes on ... I waited, and my full-time job became finding out what was wrong with me medically, getting treated, and going back to work; I got worse ... in 2003, it was apparent that I wouldn't be returning to work, so I filed for disability. (Yes, I believed ... so much ... that I would recover, I waited over two years before filing for disability and lost income I could have had, they only go back one year.) My condition worsening, my marriage did too; I could no longer handle the problems of the marriage, as I lay there on my back, day in and day out, too sick to function ... and others came in to care for my home and help out with my children while the husband "ran about," sparing no expense, and cleaning out the thousands of dollars what took 22 years to accummulate for the sake of our family (college, retirement, safety net, etc.); which I feel, was not mine or his ... but belonged to our children in case something happened to us, and for their education. In short, that situation got unthinkable and others stepped in on my behalf upon a particular "three-day-gone" excursion and my mother gave me the fee, in full, and I immediately filed for a divorce. Since, he's been hiding and ducking (working for cash) ... which left us in poverty, so the further strain of that left me physically drained. That's all over and the bills and all are covered now; all would be fine now (that was in 2006, the kids are grown and living independently ... but no college and no inheritance; they must do that for themselves) and I've been worsening since. I know all about sharing personal information, and I do not mind sharing mine ... not one bit. I wish I could get out there and use my experiences to help others; I have never suffered in vain. Sadly, PML really limits what I am able to accomplish ... and it is about all I can do to take care of myself and share here; I'm so tired and achey. My biggest desire (for several months now) has been to attend church regularly and get around people with similar goals (I'm not dead yet, LOL). By the time I shower and dress (no makeup, no accessories, nothing ... wet hair even), I'm absolutely drained ... done for the day! Keyboarding here is the easiest task I am able to accomplish (I suspect that is because it was so second-nature throughout my occupational life) ... but even keyboarding is becoming a drain. Also, I find that writing is the best way for me to communicate ... when I try to speak, I either cannot find the words or they simply won't come out!! When I'm lucky, speech is slow and slurred. I stumble about clumsily and speak these ways ... I appear INTOXICATED and it keeps me inside, it's such an embarrassment. I do leave with my closest friends and loved ones, and they take my arm and walk with me so I don't stumble about and it's not so noticeable; also, they order for me when we eat out. But unless one of those people are with me, I dare not even go to the mailbox. This is getting very ugly. Thanks for letting me drone on.
    neurotransmissing 145 Replies Flag this Response
  • I understand...you sure you haven't been poisoned or something...men!!!
    Monsterlove 2921 Replies Flag this Response
  • I understand...you sure you haven't been poisoned or something...men!!! How ironic you should mention that, very perceptive you are ... it's been "much more" than mentioned, no further comment on that exept I'm keeping it singular ... just one man!!! (I prefer not to go there in my mind, a difficult possibility for me to swallow, that human beings are capable of such horrific things ... especially the one I married. Sure ... I see it on the news, but "that would never happen to me." Far too bizarre.) There are good men out there .... somewhere .... over the rainbow .... ???? ROFL I found another helpful link, if anyone else is interested:http://lifequestanatomical.com/donatebody.php
    neurotransmissing 145 Replies Flag this Response
  • How ironic you should mention that, very perceptive you are ... it's been "much more" than mentioned, no further comment on that exept I'm keeping it singular ... just one man!!! (I prefer not to go there in my mind, a difficult possibility for me to swallow, that human beings are capable of such horrific things ... especially the one I married. Sure ... I see it on the news, but "that would never happen to me." Far too bizarre.) There are good men out there .... somewhere .... over the rainbow .... ???? ROFL I found another helpful link, if anyone else is interested:http://lifequestanatomical.com/donatebody.phpneurotransmissing,You ROCK, girl!!!There definitely ARE decent guys wandering the Earth...seeking their Soulmate...most often in vain. Perhaps in the same quintessential primal quest as that of the "fairer sex?".......As YOU are sorely aware, I'm certain...very likely more so that the rest of us...Life is definitely both fleeting and TOTALLY of the Random. How often many of us, due to a fender bender...missed cab...lost dog...OR LACK THEREOF...may have missed by the proverbial "hair's breadth" the eye contact, rubbing of elbows, with a person so perfectly the "key to our lock"...or "lock to our key". What a very inspiring...and equally depressing thought!! (Although some of us have been VERY lucky...and VERY blessed.)Enough philosophizing on my part. Thanks, neurotransmissing my friend, for defending the honor of "mankind" in general...despite the both obvious and obnoxious shortcomings of individuals."And the Dreams that you dare to dream, really do come true."Long Live Rock!John<
    JonMac 165 Replies Flag this Response
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  • This doctor should be able to provide you with info:http://www.neurology.org/cgi/content/abstract/70/5/336Address correspondence to Dr. Richard M. Ransohoff, Lerner Research Institute NC-30, 9500 Euclid Avenue, Cleveland, OH 44195 ransohr@ccf.org Go for it, but why not begin while still here:clinical trials:neurologyclinicaltrials@biogenidec.com keep checking here:http://patientinfo.ninds.nih.gov/ National Organization for Rare Disorders (NORD)P.O. Box 1968(55 Kenosia Avenue)Danbury, CT 06813-1968orphan@rarediseases.orghttp://www.rarediseases.orgTel: 203-744-0100 Voice Mail 800-999-NORD (6673)Fax: 203-798-2291 This is excellent information, Monsterlove ... thank you!!! I found a trial through one of these links (? can't remember which ? ... PML symptom ... LOL) and they are still accepting people but I must have this diagnosis confirmed to be eligible; they are especially excited because I will be the only one that is immunocompromised and DON'T have HIV/AIDS, so they want me. I have an appointment today with an ENT to evaluate for a lymph node biopsy ... I don't know if the ENT does this (?) or will just evaluate and send me elsewhere, oncologist, I understand, comes next. During the lymph node biopsy, they are testing for the JC Virus ... so I'm told so far (I'm not holding my breath for much anymore!); regardless ... if we can't find the JC Virus in time (if I have the virus/PML) it will be too late and I won't make it into the trial; I have only a couple weeks left to find out ... because the trial ends in December 2009, which means I have to be ready in June! :eek:I can't thank you enough for this; I'm more than happy to test a new oral med if I have PML anyway ... no harm in that!!:DHarmonium, I contacted Biogift and await my packet at present; when I get everything, I will choose; thanks again for this information. :) Here's the list for whole-body donations as is stands to date; one of these organizations also takes organ donations. Typically though, it's one or the other ... organ donor or whole-body donor, few do both: http://www.biogift.org/index.htmlhttp://www.iiam.org/http://www.anatomicgift.com/http://www.lifequestanatomical.com/index.php
    neurotransmissing 145 Replies Flag this Response
  • very cool; hope it helps...:D
    Monsterlove 2921 Replies Flag this Response
  • Thank you!! :DHere's the skinny: I went to my appointment yesterday for the evaluation pertaining to the swollen lymph nodes. He believes its viral ... maybe PML, but as likely, maybe not ... maybe some sort of rare "mutation" other than that, or rare as well ... some combination gone wrong because conditions were just right, who knows?! Anyway, he told me to stay optimistic, because we will know ... these swollen lymph nodes could, indeed, be a blessing in disguise! When the lymph nodes are completely involved, as in my case, there is no better way to find a diagnosis. He said the lymph node(s) in the neck that is/are so swollen will tell all. I don't know if he meant singular or plural, but they want the one at my ear by my jaw joint. Now I could be wrong about this, but it's my understanding that when the lymph nodes are so involved ... they're getting a very good look and the best chance at a diagnosis ... much moreso than with a lumbar puncture! And .... the doctor agreed with the one that absolutely believes that the JC Virus needed to be tested for immediately (total of three opinions, one was an absolute yes; one was a possible but doubtful; one was an absolute no, don't have PML/JC Virus ... won't be seeing that one again!). So I now have a group of doctors that I am very pleased with and they are all over it! My CT scan to view the lymph nodes so they know where to cut is scheduled for tomorrow; the doctor explained that, under the circumstances, an entire lymph node should be removed entirely in lieu of needle aspiration ... and further, feels very confident that we will get answers; perhaps not all (if there is multiple underlying 'other things'), but something! (And hopefully ... not PML.) And the good news is ... appears another lumbar puncture won't be necessary after all; hope that stands, with answers, of which they are confident, it should. I really feel like I quit after the biopsy, but there's one more option ... a really great neurosciences clinic that may be able to find something. That's last call for me ... this is worse than just letting "whatever" run it's course and getting relief. The Almighty's in charge, the way I see it; I've done my part ... when your number's up, it's up. All part of the plan. Today's posts sure have a lot of babble, my apologies! I'm on Adderall XR to keep me "as alert and functional as possible" and I'm not liking it one bit; does nothing for my personality here, in person; irritable, tremors are worse ... a terrible feeling, guess this is speeding!! Think I'll be opting out of the Adderall XR and just sleep away the majority of night and day ... No more of this stuff!:mad:
    neurotransmissing 145 Replies Flag this Response
  • What set off your PML? What originally weakened your immune system to set it off?Is it remotely possible to increase your immunity currently? There have been cases where that slows or stops the progression of PML.
    misskr 17 Replies Flag this Response
  • I know the hardest thing for me in all this (aside from not knowing what's going on) is not being able to go out in public on my own. Even though you can't make is to church, use your keyboard to surround yourself with people who's strength and faith is like yours. You are a wonderful inspiration and I wish I could say something to you that would touch your heart in the same positive way you have toughed mine. I will continue to pray for you as I have since I first heard from you. Please continue your story. I tried to email you at neurotransmissing@yahoo.com but it was returned. If ever you are up to it, please email me at kawendie@yahoo.com. Bless you!!
    Kawendie 12 Replies Flag this Response
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