SENSITIVE TOPIC: How Do People with Multiple Sclerosis Die?

Suffer from all of them have had the Heimlich performed on me twice the only one I haven't suffered from yet is urinary tract infections but incontinence is horrible I literally stand for 5 minutes to urinate some times

It's been 2 years. I'm doing SO bad. I can't get a neurologist to officially diagnose me - it's all there. MRI's C, T & brain w/wo, low T3, high EBV titers - negative VEP & SSEP. They didn't even have the courtesy to tell me the doctor decided to cancel my appointment. I'm not good enough to help apparently. I paid $29 to get my records today. I wonder if you have a video on how to find help.

I’m just going to write this the way I’m feeling right now. My thoughts will sound negative. I’ve been living with MS since I was 30. Now I’m secondary progressive, I can’t live on my own, my career is gone because of this disease, I fall, have seizures, disabling fatigue, anxiety, depression, and the worst, pain. Because of the stupid CDC and DEA, I can’t get enough pain relief to put a dent in my severe pain. Pain has made everything worse. My quality of life sucks. I’m now in my 50s, and I don’t get mammograms or colonoscopies. Why? Because I don’t care anymore! I wish for death instead of this prison I’ve been confined to for over 22 years. Dr. Boster, do you care about your patients who wish for death because their pain has paralyzed them? Do you understand how I feel? I’m a Christian, and I know where I’m going. I’m not going to commit suicide, but I wish a doctor would care! I’m declining quickly, also. What happens when I’m in so much pain, but I can’t tell anyone? I’m scared.

Thanks Docter for the useful info

Thank you so very much Dr Boster.I feel so alone and isolated.I have no family contact,I wasn’t blessed with children of my own and our MS Society here isn’t very supportive either.I’m not feeling sorry for myself…no way.I have found you and reading your MS advice is good.

I have a couple of what he was talking about sometimes I do have trouble swallowing. My feet are so blown up that just don’t go down and a husband who has no time to put my surgical stockings on my big one is the urinary track infections I get them once a month and I’m hoping that it’s because I’m in a depends diaper from 1030 at night two 930 10 o’clock in the morning my husband‘s out working and we’re by ourselves this video was very informative thank you

Sensitive but necessary thanks for the info.

Thank you for this. It is a sensitive topic, but you tackled it with kindness and grace. As a caregiver of someone in the later stages of disability who worsens every day, I have been having a real hard time finding information on some things, but your channel has been more helpful and informative than anything else online.

Thank you very much for the video doctor.
I have progressive ms and all I can say to people with ms is don't worry about anything live your life to the fullest. When time comes and you can't move a finger get euthanized .
Well that's what I'm gonna do.
Good luck and
Take care and all the best .

MS in South Africa is supported by enough doctors. Was diagnosed in 2008, RRMS. I have now got 9 lesions also lesions on the optic nerve in my right eye. Neurologists here don't want to figure out treatment for organ failures caused by MS. I HAVE a Prolonged QT Interval. And at time of relapse treatment, my doc couldn't be bothered to have it looked at. I am on beta blockers 10mg Cardicor. Was told I can't go higher dose. Next step is pacemaker. I'm terrified. 15 years later and my body is literally falling apart... 😩

Excellent. Thanks Aaron

Well my best friends dad turned 89 yrs he has had ms since 21 yrs. He 4 yrs ago started using a wheel chair but he has always used a cane.He has outlived 4 of his neurologists and all his friends who looked healtthy🤔 We all will die diabetes cancer Als an from other diseases

Thank you Dr. Boster! I appreciate you talking about this, as not one dr. has ever mentioned how this is might play out, what I can expect or look for. Years ago, I created a living space for a more disabled future me, and glad I did. Now to prepare for the best send off possible.

Good Morning sir. am P.Muthukumaran. age44. MS Patient in last 14 yr. Still 3 yr back. am attack from hip and legs weekness.and Catheter use. sir pls help in my Revision life. any treatment or exercise. please help sir. thanks.

Great video. We cannot solve problems we don't acknowledge and it seems like a lots of doctors don't want to acknowledge.
Can you please do a separate video on UTI's to expand on this topic please? I have chronic UTI, but got ultrasound done that show my bladder emptied normally. Something is definitely not right, but my medical knowledge is limited to self diagnose myself. So it seems like other doctors struggling as well as my test doesn't show an infection in some cases.

Question: Can you have advanced MS when you’re not old? There is huge lack of honest info about Advanced MS. I am writing about it now.

There is absolutely no reason why people have to die from ms. This medical system does have the capability to find the actual root cause. There are diseases of pathogen source that cause nuerological immune suppression problems months and yrs later and which are denied, ignored. This medical system has the capability to do very thorough research instead of saying we don't know. This is people's lives here and this medical system is not fully doing what they are supposed to, all there doing is half assing things and say we can't help anymore, yes they can, find the root causes and treat them. There are absolutely no reason for people to die when the medical system has all the tools to fully help. This happened to me over a decade of wasting my time and energy looking up to false hope thinking conv medicine will do the right thing and never happened. I could not move at all, couldn't talk, eat, pick up a utensil to eat. What caused all this is lyme, mold, ebv and candidas all found by a urine tests. I have severe nuerological problems because of these. This medical system is pulling everyone's leg. They can do more. An Immunoglobulins test, wbc counts and the others will tell what's going on. Chronic diseases will show very low abnormal numbers. The medical system skimps on testing and skips important steps to find what really happening to your body. This is Healthcare and lives should not be played with like this. The lesions are actually biofilms caused by pathogens, parasites, worms in the brain. If No one knows what causes the lesions well here's a start.

Thank you.

Hello Dr. Aaron, I have MS and I’m stuck in a wheelchair and I just want to say I enjoy watching every time you post something new I find them fascinating and you are an awesome neurologist! 👍🏻

Thank you 🙏🏽

My father has advanced MS. He also has prostrate cancer with a PSA of 9. He also suffers dementia whether from MS or otherwise as his mother, sister, both passed from dementia.

My father is the kindest man you would meet. Always has been. Je was.a.police officer for 35 years, a criminal investigator, amd fraud specialist, .

Somehow his meds were found behind the furnace behind the furnace knowing he would forget about them but my daughter and i were on top of it, found them, replaced them, to no avail. He had a stroke, since then two more.

He is in an assisted living facility where she has control of his medical decision. So when he developed.aspiration phen, no tube was insurted to help him eat. Hr has had serious bed sores, has pain with no meds. Unless I push which i do.

I had to stop going up to see the one man always there for me as she would never let us have time alone and I was getting sicker by the visit from distress. He has an advanced order for assisted death should he get where he is now but doesnt remember nor can express his needs.

No one can update me on his health or his 90 year old sister as she has control of his health.

He gave me control of his finances legallly but it will not be turned over to me. My brother is older but has a trach and feeding tube due to cancer treatments and an incredible wife who has stood by his side through all of his challenges.

Thank you for reading. I respect the work you do. I needed the ear of someone outside our circle to listen. My father will be 87 his next birthday in December and he is drained and suffering. I feel helpless.

What about suicide

45 rrms 😢😢😢😮😮😮❤❤❤❤❤❤

I watched my dad SUFFER with MS since I was 6.. to 24. He declined rapidly. It's a sad disease.. and how he was at the end still haunts me. I pray for everyone who is effected by this ugly disease ❤❤❤❤❤❤

My mom died of m.s. As a child, I remember the doctors telling me that it wasn't fatal and that she'd have a normal lifespan. It WAS fatal and she did NOT have a normal lifespan--not even close. I feel as though I was lied to and I'm angry, tbh.

Mother is 67 and had been diagnosed for 37 years. She is now in hospice, but she has had all these for about 2 years now.

my sister is 65.5yrs with MS, her dad died at 44, her son at 34, both from MS. She is older than 2 of her siblings that died. Any age we get past +0 is great!

I am a 74 year old woman living with MS since 1996.
Mine is a very mild case. I know that I am one of the lucky ones.
After my diagnosis (which at the time I thought was a death sentence) I decided to read every book I could get my hands on about this mystery disease.
This journey has not been easy. I’m not going to lie.
It was only the constant love and respect from my daughters that carried me through the years. My marriage did not survive.
My depression became so dark I found myself in a hospital psych ward for suicide attempt.
That was many years ago.
I am better now but the aging process is taking a toll on me.
I’m happy my suicide attempt failed or I wouldn’t have seen one daughter get her masters degree from Harvard nor the other daughter get her sci-fi book published. 😮 wow they make me so proud I could weep all day.
We have a mutual love and respect, my girls and I
And in a crazy kinda way I have MS to thank for that!!!!

Hi Doc,
Thank you for this info. Although its 4 years ago, it was still very helpful. Unfortunately, my mother is suffering from all 4 of your points, plus she has a compromised GI tract due a full colectomy she had 5 years prior to being diagnosed with MS (1999). She is now suffering from repeated ileus. Your videos have helped me learn and accept what this disease is doing to my mother. Thank you

My wife is super amazing and has beentakingcareofmeforthelasttwoyears.I have a feeding tube and aspersions is my biggest fear. I don't like to talk about death with my Dr because I don't want to make it look like I have quit. Thanks for the videos

I am 23 and was diagnosed with MS last year... the comments are making me really excited for my future💀😭

Ho my husband has been having a lot of Delirium attacks and they last for weeks at a time when he has them his swallow is affected he has had the illness nearly 40 years I'm not sure what I need to do to get him right again please help us

I think you did a good job here. It's good to be aware of things that could happen so you can mitigate the consequences if you can. I was impressed with your presentation.

Dr. You’re where the buck stops with your patients. Glad you’re discussing this in a make believe world….😊 People need to either deal with these issues for just give; which we all do in the end .

Please 🥺🥺🥺 help

Please help me with MS really hard for ms im getting ready worse 😔😔

😢😢😢😢😢😢ms too many times MS

I came here looking for answers... My Sister in Law passed away suddenly yesterday and unfortunately, it was my brother who had to find her... I am beside myself for him and for her children... And she wasn't just my brother's partner, she's a deeply trusted and cherished friend of mine as well....

About 3 days ago her pain in her body, and specifically one of her legs, spiked dramatically. My brother took her to the ER but they were so packed he said there wasn't a place to even sit down for some folks. After hours of waiting and getting nowhere, she asked that they go home. The next day (yesterday) he went to work and while she was still in pain, she managed okay. When my brother got off of work, he called to let her know he'd be there soon... She said she was going to draw a bath and see him when he got there.

Unfortunately, my brother returned to find her submerged in the bath, her phone right next to her. He said bubbles of air were coming from her mouth. He thought for a minute she might still be saved... But in spite of all his efforts and the efforts of Emergency Services, she passed away.

She was only 40 years old. She leaves behind two young teenagers and our families and friends. My brother is absolutely devastated. It's too soon to know what happened, but my brother said it must have been quick. There wasn't any evidence of splashing or her attempting to use her phone to call for help.

I know he is beating himself up for not getting home quicker, but I don't know if it would have a difference anyway, even if he had been there... I know he's wishing he "made" her stay at the hospital... It's hard to console someone who has just lost the love of their life, but I hope that he can get some answers soon. I was hoping to learn more about MS since I never really wanted to ask her anything that would make her uncomfortable. I thought this channel would be a good place to start.

I forgot, however thin she was and how she sometimes struggled with walking and talking, just how fragile she was. She has this larger than life personality and such a sweet, genuine soul... Also incredibly mentally strong and mature... I am just word vomit right now. I'm in disbelief and I'm trying to find a way to comfort my brother and family. She is going to be extremely missed.... 😢😢😢

I have went to the doctor yesterday and had to have a nerve test done in an EMG the doctor said that he was really concerned that my muscles was weak and me not controlling my bowel movements and my my urine and he said that it could be Ms and he said to the doctor ordered blood work I said no just the X-ray and the system so and I need to look on his face. I was scared, my other doctor just told me I had a bulging disc and that I had weakness in my legs heaviness in my legs I fall all the time. So I don't know why that doctor would have said something because my other doctor for years never said anything like that

I have a hard time swollen my food also .I'm waiting on my MRI, ,I always have UTI always

I have Secondary progressive MS. I have all you mentioned except the bed sores. I keep onto of it all now. But it's a constant struggle. I have chronic nephritis, so even with diet changes and distilled water. I still get a bad infection at least once a year. I am 62 and want to enjoy the time I have. Not spend it constantly in a Doctors office. Any advice?

Heartbreaking. My mom has advanced multiple sclerosis. She was diagnosed on 8/2004 and never realized that she would be at this point. Suffering a stroke 12/2017 left her paralyzed. She is bedridden. On a honey-thick diet and choking on a thick honey diet. Nonverbal since pre-pandemic. Heartbreaking. Makes me sick and helpless and hopeless. my sister disowned her long ago for childhood grievances. My mom has all the Risk Factors he mentions. Sensitive topic yet no realizes the truth of it and the likelihood that it will happen with some MS cases.

Thanks for your advice. Much appreciated.

My cousin died the other day at 34 years old after suffering from PPMS for 10 years. 😢. Life cheated him, but he remained brave throughout the entire ordeal.

I miss him dearly.

I was in the hospital 7days they would not order a ct w/c and I am numb all over

It is Awesome news. I have had MS for more than 15 years. I have all the symptoms of MS including Trigminal Neuralgia and I was thinking about how long I will live like this. Thank you, Dr. Aaron, for giving me hope

❤❤❤❤😢😢😢😢thanks dr b

I hope you're still reading these messages. Because I know am diagnosed with Ms (probably doctors aren't sure) however they are 99%sure but I was experiencing permanent bad breath to and now for the first time ever I'm hearing that difficulty swallowing might be a possibility to
Also having a lot of heavier breathing and indeed the control when swallowing I am happy that I came across this video and makes me beeing alert also on the things my doctor's didt tell me

:)

My daughter looked at me this past week and said mom are you jealous of your Grandma? I said no, why honey? She said because she lived until she was 93 and you won’t. I won’t? I replied. No mom because of your MS. That was a sad moment. Mainly sad that my daughter had that thought. I can’t imagine how that makes her feel. My daughter is 10. Unfortunately, she’s most likely correct. When I was diagnosed in 2017 my neurologist at the time said your life expectancy doesn’t change due to MS. I am a nurse so I knew that wasn’t true. If anything it changed your quality of life. I spoke to my husband about aspiration PN and Sepsis due to UTI. What your video did was validate my thoughts. It is a hard topic. After listening to your video I said to my husband I was correct. No it’s not a pleasant topic. However, it’s one that needs to happen. I appreciate your education. Thank you.