Would you be willing to donate your brain (upon death) for MS Research?

I'm not entirely sure about how I would feel about doing this. It would take a lot of thought before I had an answer. I'm more than happy to donate (the usual) organs, with a few exceptions...skin...bone and eyes. So I'm not sure if my brain would fall into the "ok" or "not ok" part of organ donation.

The brain is what makes me who I am, other organs are more "generic". I'm not sure why, but this poll really creeps me out.

I'm thinking I don't need ANY of my organs after I'm dead, so why not offer up the brain?

The only thing that's weird to me about organ donation is whether or not hospital staff at the end of your life ever get pressure if someone's organs are shall-we-say urgently needed elsewhere. I doubt that really happens but I can see the potential for some pretty big ethical conflicts.

I once asked a neurologist who has MS himself if I could donate blood (ya know at the blood bank drives) -he said that because I have MS they would prefer that I did not.

I can only assume that they don't want my organs for transplant either for this same reason. ....But - if they want may brain after my demise they're more than welcome to it. I pray that this will lead them to a cure.

I'm happy to donate all of my organs after my death, what use are they to me post mortem? They are welcome to my brain, whatever M.S. has left of it...

It was a great brain originally, ranked me high in the I.Q ratings (150-165) and highly qualified in many areas (psychology, criminology, genetics, computing, politics) sigh...

Nice to think parts of me can be put to use for someone, somewhere, somehow. That way "I" can live on beyond my mortal coil..

All this talk of death is depressing. When I was first diagnosed I believed that in my lifetime there would be a cure, we would know what caused it and how to stop it. Nowadays I'm not so sure I was right, I keep reading the literature and feeling hopeful. It may be too late for me, like my grandmother who had Parkinson's..

It seems to me that alot of very smart people come down with MS-anyone else notice this?

How do they retrieve the brain after death? Is it obtained by decapitation? I'm not sure how I feel about that, even tho I wish to be cremated upon my demise.

I could be in favor of it if I received more information on the retrieval process...

I have no problem donating my brain, in fact, if any thing can bring us closer to a cure I am all about it.

I am all about donating organs for the good of mankind but something just seems a little disturbing about donating our brain. It stores all of our memories, our beliefs, our values, our essence. The thought of someone disecting that just seems unsettling. I am having difficulty getting past that.

Cathy,
That was a poignant life-in-a-nutshell reflection, it stirred my brain! You summed up what many of us must feel. This entire discussion page touched me, and I am so glad that I have these anonymous online cohorts to share this experience with. Every one of us has a beautiful soul, but steely edged, honed by suffering.

Art, as always, moderated in an illuminating and caring fashion. Thank you to all for helping me think about the brain donation (sure, no prob) but also the larger concept of facing a likely cause of my own demise, barring a cure. It is always good to revisit the joyful experiences I've had, and plan new ones I don't want to miss. Now if I can just get that ride on a bull named Fu Manchu ;-)

SammyJo http://LDNers.org

I had been on the "organ donators" list for many years, but with my MS diagnosis and after being told by the Red Cross folks that they no longer want my blood donations (that's the only time I cried about my MS: after being told they don't want me anymore), I suspect most of my vital organs will no longer be wanted for transplant purposes. (Perhaps my corneas would still be useful for transplant.) But since I intend to have the old bod cremated anyway, removing the brain for MS research is no problem for me.

I don't believe one's soul "resides" in the brain but I guess one's memories do, much like being stored on the PC hard drive. I think the soul, if it exists, is more like the essence or energy of a person, and that it continues to exist even after the body dies. This is more theology than science and I'm no expert, but this may help those who are otherwise hesitant to donate their brain.

I would not have any problem donating my brain to science (after death, of course).

I had always planned to donate my organs to science, and was really bummed when I was diagnosed with MS and was told that I could not donate my organs or blood because of the MS.

I won't be using my brain anyway--science may as well have it!

Erin

Think of all the help to science and the discoveries regarding MS. The essence of who we are is NOT found in a body part that starts to deteriate the moment life ceases. The recovery of the brain organ will most certainly be conducted by professionals in the field. Why wouldn't I want to be able to contribute something as important to research as this. Do not convience yourself that your existence is held in a soft tissue organ that controls a living body. It angers me that none of our organs are acceptable to help someone else, even temporarily but I guess that human fears will outweigh the need for organs in this instance. If my brain could contribute to the knowledge of eliminating Multiple Sclerosis after I'm dead it will add to the joy I will be experiencing in my life with God.

I would have no problem donating my brain to the studies of the world and if it could cure anyone...hey I am more than happy to
help.
If I can say this..as I too was upset during the Gulf War that the RED CROSS did not want my blood because I have Multiple Sclerosis...its BLOOD...Blood that can save lives...so if my blood is infected with MS...which no Doctor has ever said anything to me about...I can go on and on here...having had MS for a very long time...but hey...what is life...without mixing it up a bit...?????

I would certainly donate my swiss cheese brain to science. Nobody else would want it. I do not expect a cure in my lifetime (I am 46) but do hope for better treatments with no needles and maybe stopping the disease right where it is.
So if that doesn't happen, maybe someone down the road will benefit from it.

Oh woe is me! I would definitely donate my brain to science. MS has really taken a toll on me physically/cognitively. Dx.in Aug. '05 at 43 yrs. of age with primary progrresive, which is now, there goes my memory again. whatever they call it, I forget every thing, for example my passwords, which happened when I first tried to log in. Now I try to use the same password for all my accounts (not a good idea, being an I.D. theft victim already). Thus you live and learn. Anyways it was very disheartening reading the other comments re: donation of blood, organs. I was not allowed to donate blood by the So. Fl. Community blood Bank because of MS, after being a gallon blood member and founding doner for the Red Cross at the Univ. of Miami School of Med. I was employed there from '89-'98. First in the Public Safety Dept. as an officer, then made a lateral transfer to Physical Plant. In this position one of my duties was checking and answering any trouble call or problems at any of 23 blds. on campus at that time. I did this for 5 yrs. untill the various shifts took a tool on my mental/personal life. Aafter going out on medical leave for 90 days I returned with a Dr's. recommendation to get on a regular shift, my shift was off on Sun./Mon. 07:30- 16:45 Tues. back at 24:00-08:30 on Wed. (which still felt like Tues. for me). Then 16-30-24:00 on Thur. Fri.- Sat. 16:30-24:00. I was also attending college to enhance my future prospects and con sidered myself a pretty sharp tack. Now I'm no longer the sharpest knife in the drawer as they say due to MS (Deans List 4.0 avg.) now my cognitive skills have gone to pot! Now getting back to my med. leave, upon my return after the 90 days I explained to the Dir. of P.P of the Dr's recommendation of going on a straight shift he just, smiled and said I'm sorry but thats the only shift available. Now as I said I was pretty sharp and having been in th U.S.M.C I was not going down so easy. I was familiar with policy and procedure and knew that I had to work at least 1 day of my shift before being ablle to request more med. leave. I was only getting about 10 hrs of rest per wk. before going on leave, when he did that to me my nerves shot through my head like never before. Thus after returning that midnight to work and completing my shift I went back to the Employee Assistance Program w/ my dr's reccom. and explained my predicament and got 90 more days from them on med leave. Upon my return after my second LOA I took the Dr's orders in writing and I was put on days Mon-Fri. 08:30-16:30 and became a zone mech. only responsible for 6 bldgs, one of them happened to be the Parkinsons bldg. (little did I know at the time how I would make my return to that bldg. some day). to make a long story short I was responsible for all the equipment in that bldg.re the Phys. Plnt. A/C, refrigeration etc. including sub-zero freezers or the "brain banks" as they were called. never did I see any mishandling or misuse of these "banks" and I would know because everytime they opened I would receive an alarm and would respond immediately. so yes I would very much donate my brain to Science for future MS reseach and a CURE!!! since my other organs are useless. I've been a registered organ donor for close to 25 yrs even got my wife and oldest son to register because it was such an important project for me. well thanks for allowing to write my small comment on your "soap box" SEMPER FIDELIS

I absolutely would. I have already expressed my wishes to my loved ones. There isnt much I would not do to help find a cure for this disease that consumes our bodies and attacks without warning.

I figure it this way...I won't have anymore use for it and maybe, just maybe it will provide the key bit of information to help cure MS so others like me won't have to suffer from it.

SINCE I HAVE THIS DISEASE, I WOULD CONSIDER IT SELFISH NOT TO LEAVE MY BRAIN TO SCIENCE SO THAT IT CAN BE USED AS A TOOL FOR LEARNING AND ADD TO WHAT WE ALREADY KNOW ABOUT M.S.
IT IS MY HOPE THAT A CURE WILL BE FOUND SOON SO THAT MY CHILDREN AND GRANDCHILDREN WILL NOT BE FACED WITH OVERCOMING SOME OF THE CHALLENGES AND DISRUPTIONS I HAVE HAD TO.
I HAVE FOUND SOME LIFE ALTERING BLESSINGS BECAUSE OF MY M.S. AND WOULD NOT GIVE THEM UP FOR THE WORLD. THEY HAVE BECOME A PART OF MY LIFE'S JOURNEY AND WHO I AM. I WOULD NOT HAVE BECOME THE TYPE OF HUMAN BEING I AM NOW WITHOUT THIS EXPEIENCE. IN RETROSPECT, I AM GRATEFUL FOR MY M.S. AND FOR WHAT IT HAS TAUGHT ME ABOUT MYSELF AND MY FELLOW MAN.

Memo to BARBARA51: Way to go Barbara! You're my kind of fellow-traveler!

I've just been diagnosed with Lyme disease through a speciality lab in California. The U.S and Canadian tests for Lyme are a joke. Many false negatives. I tested 5 times via Canadian labs, all negative.

Lyme is the master mimic and mirrors MS down to a T. Included in this, is, optic neuritis, cognitive decline and plaques on an MRI. The doctors unless they have experience in Lyme can't tell them apart from MS.
It can also cause balance probs, vertigo, speech and gait difficulties.........I also have the joint and muscle pain.

I spoke with a doctor who was instrumental in making the Dvd, "Chronic Lyme Disease and its Connection to MS". It was done at the New Haven University. I got it through my Lyme organization Canadian Lyme association. There are many Lyme sites in the U.S.

It can also mimic Fibro, Parkinsons, Chronic Fatigue, Alzheimers and ALS.

Has Lyme been researched here at Acelerated Cure? I have seen some articles about Lyme here, but have they really looked into it? Therein may be the answer to this elusive question of what causes MS.
I would definately let them play with my brain!! It may be the only way I can say to (some) I TOLD YA SO!

Absolutely. I'd like to know that my brain could not only possibly help in the fight to cure MS, but that I wouldn't just be dead and buried. My brain would continue on by working for a good cause.

I've just been diagnosed with Lyme disease, so I thought I would share with you all, the whys and what fors.
Lyme disease is caused by the bite of a tick. The tick in the nymph stage is no bigger than a period at the end of a sentence. This would be the size -----> .

Its a misconception that everyone will get a bulls eye rash, actually under 50% ever see one and, many don't even know they are bitten.
Lyme disease is called the master mimic, as it can mimic many illnesses, including MS. It can show plaques on an mri and can mimic MS down to a T. It can cause optic neuritis, balance problems, cognitive issues, and fatigue. Many neurologists can't tell the difference between MS plaques and Lyme scarring.

The testing leaves a bit to be desired. In Canada they use two tiered testing. First a test called the Elisa is given and if that is positive, then a test called the Western Blot is given. Very few get a positive Elisa. In the U.S they leave out some crucial bands, thus making it equally hard to get a positive test.

The best way to get tested is through the specialty labs dealing with Lyme. I was tested through Igenex. First you have to get a testing kit. You can call or email them here http://www.igenex.com/ To do this you have to get your GP or Neurologist to take your blood and send it out on a Monday or Tuesday. If you could find a Lyme Literate Doctor that would be best because they would know how to treat you.

The testing at Igenex costs $400.00 Canadian for the Western Blot and slightly less in the U.S $298.00. Bowen is suppose to be reputable and can be found here http://centralfloridaresearch.com/lab/ Just remember no test is 100% accurate. Its based on a clinical diagnoses.

Here is an excellent site on Lyme Disease and all it mimics here http://www.canlyme.com/
A U.S favourite is here http://www.ilads.org/index.html

Symptoms of Lyme disease: LYME DISEASE SIGNS & SYMPTOMS
 
The symptoms of Lyme disease are extraordinarily extensive.  While you are highly unlikely to experience all, or even most, it is important to know what might be associated with this multi-symptom disease so that you can seek appropriate medical help promptly.
 
If infected, you may experience a few or many of these symptoms and they may come and go.  This list is not intended to be used for self diagnosis, however if you suspect Lyme disease, contact your physician for a complete evaluation.
 
The Tick Bite
  If you get a rash it may be:
          Raised, hot to touch, itchy, crusty, or oozy
          Circular, spreading out, oval, triangular, or long-thin line
Disappear and return
At the site of the bite or on other parts of your body
Note:  You may never see a tick or get a rash and still be infected with Lyme disease
Head, Face, Neck
          Headache, mild or severe
          Facial paralysis (Bell's palsy)
          Tingling of nose, cheek, or face
          Twitching of facial or other muscles (motor tics)
          Jaw pain or stiffness (TMJ like problems)
          Neck is stiff, painful, creaks or cracks
          Sore Throat, swollen glands
          Hoarseness or vocal cord problems
          Sinusitis or increase in allergy symptoms
          Difficulty chewing, swallowing, speaking
          Change in smell, taste
          Unexplained hair loss
Eyes/Vision
          Double or blurry vision
          Wandering or lazy eye
          Drooping eyelid
          Vision changes incl. blindness, retinal damage, optic atrophy
          Red eyes
          Conjunctivitis or "pinkeye"
          Floaters or spots appearing in the line of sight
          Pain or inflammation of eyes, or swelling around eyes
          Oversensitivity to light
          Decreased perception of light or color
          Flashing lights
Ears/Hearing  
          Decreased hearing in one or both ears
          Pain in ears
          Ringing or buzzing in one or both ears
          Sound sensitivity
Digestive and Excretory Systems
          Diarrhea or constipation
          Upset stomach (nausea, vomiting, pain)
          Irritable bladder (trouble starting, stopping)
          Unexplained weight gain or loss
          Loss of appetite, anorexia
Musculoskeletal System
          Joint pain, swelling, or stiffness
          Stiff neck
          Shifting joint pains
          Muscle pain or cramps
          Burning in feet
          Shin splints
          Drooping shoulders
          Loss of reflexes
          Poor muscle coordination
          Loss of muscle tone, muscle weakness
Respiratory and Circulatory Systems
         Shortness of breath, cough
          Difficulty breathing or pneumonia
          Chest pain or rib soreness
          Night sweats or unexplained chills
          Heart palpitations, extra beats or pulse skips
          Heart blockage, heart murmur, valve prolapse
          Heart attack
          Swelling or enlargement of heart
          Diminished exercise tolerance
Neurologic System
          Burning or stabbing sensations in the body
          Weakness or paralysis of limbs
          Tremors or unexplained shaking
          Seizures
          White matter lesions
          Pressure in head
          Numbness in body, tingling, pinpricks
          Poor balance, dizziness, difficulty walking
          Increased motion sickness, wooziness
          Lightheadedness, fainting
          Stroke
          Meningitis
          Encephalopathy (dysfunction of the brain)
          Encephalomyelitis (inflammation of the brain & spinal cord)
Psychological Well-being
          Mood swings, irritability, or extreme agitation
          Depression and anxiety
          Personality changes
          Depersonalization   
          Malaise
          Suicidal thoughts (rare cases of suicide)
          Anxiety/panic attacks
          Aggressive behavior or impulse violence
          Obsessive-compulsive behavior
          Bipolar disorder/manic episodes               
          Schizophrenic-like states
          Dementia
          Eating disorders
          Increased suspiciousness, paranoia/hallucinations
          Disorientation (getting or feeling lost)
          Feeling as if you are losing your mind
          Overemotional reactions, crying easily
          Disturbed sleep: difficulty falling or staying asleep,
           too much, too little or early awakening
Mental Capability
          Forgetfulness, memory loss (short or long term)
          Poor school or work performance
          Attention deficit problems, distractibility
          Confusion, difficulty in thinking
          Difficulty with concentration, reading, or spelling
          Disorientation:  getting lost or going to the wrong place
          Difficulty with speech (slowed, slurred or stammering)
          Dyslexia-type reversals, Difficulty with writing
          Word retrieval problems (can't remember words/stop mid-sentence)
          Forgetting how to perform simple task
          Problems with numbers
Reproduction and Sexuality
          Loss of sex drive
          Sexual dysfunction
          Females only:          
Unexplained menstrual pain, irregularity
                        Unexplained breast pain, discharge
                        Endometriosis
Reproduction problems:  miscarriage, stillbirth,
                        premature birth, neonatal death (rare),
                        congenital Lyme disease (passes from mother to fetus)
        Males only:  Testicular or pelvic pain
General Well-being
          Decreased interest in play (kids)
          Unexplained weight gain, loss
          Extreme fatigue, tiredness, exhaustion, poor stamina
          Swollen glands
          Unexplained fevers (high or low grade), sweats, chills, flushing
          Continual infections (sinus, kidney, eye, ear, etc.)
          Symptoms seem to change, come and go
          Pain migrates (moves) to different body parts
          Early on, experience a "flu-like" illness, possibly not feeling well since
          Exaggerated symptoms or worse hangover from alcohol
Skin Problems
          Acrodermatitis Chronica Atrophicans (ACA)-
                        degenerative and chronic skin condition that leads to atrophy of the skin
          Benign tumor-like nodules
Other Organ Problems
          Liver infections/abnormalities
          Enlarged or tender spleen
          Underactive thyroid glands
          Bladder & kidney problems (including bed wetting)
 
 
SOME OF THE 200 OTHER DISEASES LYME SYMPTOMS MAY MIMIC INCLUDE:
Alzheimer’s
Attention Deficit Disorder
Autism
Chronic Fatigue Syndrome
Fibromyalgia
Guillain-Barre Syndrome
Infectious Mononucleosis            
Lou Gehrig’s Disease (ALS)            
Multiple Sclerosis                     
Parkinson’s
Rheumatoid Arthritis
Systemic Lupus
 
 

When I die, the vessel referred to as my body, will have completed it's usefulness on this journey and my soul will be departed and I will be without this DIS-ease we call multiple sclerosis, so I REALLY won't mind my brain being donated. My mind wanders and goes often now. What will be the difference ???!! :)

"I think, therefore I am. " Descartes

I've been reading all your comments with great interest, but how do you actually make it happen? Is there a place to register your wish for donating your brain? I have many diseases going on, MS is only one.

Roberta

Hmmm... I wonder if it is of use till then hahahha !

I don't know because I still young now, never think about such similiar question actually, but I think I would :)

I "AM" going to donate my brain and nervous system (if I can) to research to find a cure for this devastating disease.

My question is this....Who(m) do I donate to, and why? Any thoughts, everyone??