“You may recover, but you still have brain damage.” I often have to remind myself, and others, of this and accept I’m doing my best. I think the biggest take away is to have patience with myself, and others who are unaware. I appreciate these shorts that open room for expression and discussion to help others understand.
Explaining that I have permanent brain damage that will never go away, (even though I don’t appear to have what they believe brain damage to be), is absolutely exhausting. I’ve had to end relationships with some friends and family over this fact. Explaining to someone that you’re sick and in need of a wheelchair or a walker. Or that you have brain fog, (which is one of my more common symptoms, it presents and my baseline) that worsen with a flare or a pseudo flare… it’s like looking in the face of someone who thinks you’re lying about having a disease at all. People find chronic illnesses difficult period! They don’t understand the concept of you being sick and never getting better and never dying. So what appears to be complete healing to them and then going back to crippling disability is hard for them to grasp the concept. It’s difficult for me to hear “what happened, you are all messed up and now you seem to be normal” it’s heartbreaking to me. I get angry because I’m like if you cared anything about me, you could do a short Google search and you would understand the concept of relapsing and then remitting. Now that I have secondary progressive MS, it happens so much more often. This causes isolation and makes my disease so much much worse. I try and send these videos out, but even though I know even those who really loved me, don’t really understand😢. It’s unbelievably lonely, and support groups aren’t helpful in this particular aspect for me because they aren’t family. My mom has neurosarcoidosis, I have an aunt on both sides of my family with lupus (coincidentally my first diagnosis which is probably the cause of my infertility due to prolong use of methotrexate injections) it sometimes makes me wonder if maybe my great grandparents were cousins or something😅. I just wish I could better predict the flowers that are complete outliers to most common disease path. That way I could go hide for a few months.. that might not make sense. I’m just coming out of a really bad pseudo flare caused by a really bad infection. And infection started by UTI spreading to my kidneys due to my neurogenic bladder that requires me to use catheters. This brings us full circle, because the neurogenic bladder is caused by the multiple sclerosis. I’ve been formally diagnosed for 17 years although there are signs of MS through my childhood. I have a great neurologist, but this stuff is so confusing at times! I’ve developed depression and anxiety, which I’ve never had to deal with before. MS is exhausting.
I did the same; and now I regret not taking any meds till two years ago when I went downhill at a very high rate. I was fine; I was moving mountains till ms caught up with me and kicked me right where I didn’t needed it 😂😂😂 in the brain
@@aluna_m888 I envy you I took drugs for nearly 4 yrs then stopped from 2012 to 18 then taking a drug now the side effects are instant death more scary than the illness itself
I had symptoms in my mid 20s but Air Force , Army doctors and a Lt Col neurologist said I didn't have MS, even after a CT showed cervical nerve damage and a Bell's Palsy 5 years earlier, they didn't do a spinal tap (not the band) and returned me to duty. 5 years later it hit me hard. After showing stroke symptoms and taking my ass to the ER pronto, the usual tests after an overnight stay, I said to myself "I bet it is MS" and self Dx. My neurologist called 2 weeks later and asked me what I thought was going on. I said MS and he concurred. I started with Avonex immediately and hoped I would not be medically retired. I was med boarded twice but my career field was very limited and unique. Ergo, lots of taxpayer $$ invested in my hide. Thankfully, I was able to keep passing PT tests (even keeping up with and passing up young enlisted and junior officers then😂) and I made it to 20 years to retirement. Avonex for 8 years, 10 with Tysabri and now Rituxan. Now at 56 and still able to keep going but at a much slower even pace. Every day I am not blind, in a wheelchair, using a cane or incontinent is a GOOD day! Hard at times to keep this mindset, but other than a bad optic neuritis flare years ago, only needed a cane once during same said flare.
YES! MS was a minor inconvenience to me, and that’s all it was at the time. I did Not respect the disease! However, the ABCR drugs didn’t really help much, but when Ty came out in ‘05, I thought I didn’t need such a risky drug. It possibly could’ve changed my MS course.
@@Lulmane00Tysabri-it was a very effective drug for me but you could only have it (by infusion once a month) for two years when it first came out because it had a risk of allowing a disease (PML) to occur from a virus called JC which could cause brain damage or even death.Patients on Tysabri are monitored for the virus. I found it a good drug back in the early 2000’s
I agree 100%!!! However, no one, and I mean no one, not even my doctor, gets it. I dont know if Im not complaining enough or what! No one understands, nor even thinks Im sick. I guess I keep too much to myself. Im really worried. I wake up in so much pain. I ask the Lord how much longer do I have, and can I make it much longer? I turned 59 last week.
Took so long to get a diagnosis! First attacks in my late teens. Was misdiagnosed until age 35. Am now 55 and am lucky I can walk short distances with a cane or walker. I truly mean I am lucky. All of you out there with advanced MS, I see you! 💞
Yes😮 Took me 1 years to get a diagnosis. My mother told everyone, including the few Drs who would see me, that I was just lazy and faking symptoms . I'd worked full time and overtime, or two jobs, for22 years. But the symptoms made my ability so unpredictable that it got really hard to find even temp work. I had to.wait til Dallas got their first MRI machines, and I used all my savings to get tested. I got several scans at half price by going in the middle of the night while the Drs and techs were learning the machines. Showed I had paques in my brain And spinal cord, but by then there was so much damage I never regained much function.
Really needed to hear this. All three of my first attacks were on my c spine. Had two very small ones on my brain after that I didn’t even notice. Been told how lucky I am despite the crippling chronic pain and fall into the I’m ok, I’ll be fine now trap quite often. Ty for these shorts. Have reopened my eyes and reminded me to take this more seriously ❤
Had four major strokes and two TIAs wasn't diagnosed for 25 years. I must say GOD Set my rise HE kept rewiring on my behalf. I completed my Bachelors degree and got a Masters all as a cum laude then suma cum laude while physically functioning after each stroke. HE made a way out of no way.
I wish I had heard this then. I was 22, and Rebif was the only medication option and med compliance was really hard due to all of the horrible side effects (and the whole needle part). I was blissfully living in denial that I even had MS. It wasn't until I had a relapse 7 years in that I even fully accepted that I have MS. Convincing me to take my medication regularly was like telling a teenager to wear SPF 50 to delay visible signs of aging in the future.
You are a Godsend Mr Aaron Bolster. I love watching you. In fact you have definitly made this ms journey easier for me and im sure lots of other people ❤
Thank you Dr. Boster for your clear informative statements. I would have benefited from these statements 33 years ago. Rather than you "your disease is benign", "you're a 34 yo male" , "you have nothing to worry about". I understand top neurologists specializing in MS weren't so wise in those days or were reluctant to reveal the likely possibility of progression. Subsequent complaints of subtle progression were minimized by these same top neurologists specializing in MS. The approach to treating MS from onset has radically evolved.
This is spot on for me- good to know- it’s so crazy how it takes an accumulation of incidence’s over such a long span of time for it to make any sense- during the years of searching out answers and treatments and wondering Wtf - pardon me but, that’s what I thought for years- luckily I was finally treated for my horrible symptoms and am under the care of a lovely MS specialist- thanks for the information it’s truly helpful to me.
I got Lyme disease and then I thought it was I asked for tests and I was given the wrong tests in the state I live. I moved to a different state Oregon and they gave me the exact right test came back with nine immune responses came back home and requested the same tests and they didn't give it to me. I didn't take into consideration it might be MS... so I have both. I'm afraid of lowering my immune system
I did for 2 yrs and it didn't work. There is only one woman that claims she was healed naturally along with Terry Wahls and she is not being forthcoming trust me
2015 I was misdiagnosed with minor stroke (somewhere, no legions) and I was doing really well after that, after my right eye uncrossed. 2020 I had another episode/relapse and was diagnosed properly based on 2 legions in brain and one on spine. I didn't bounce back as well but can still manage to work and do stuff with limitations and difficulty. I'm 56 right now.
And when you have Drs that don't listen to you when you're telling them about symptoms. Years and years later, finally someone sees all the damage & you went without treatment. Now you're suffering from all that neurological brain damage & suffering severe disability.
Same and I'm 66 and awaiting an MRI for diagnosis. I already know! I've had all the symptoms for many years. Was finally diagnosed with EBV at age 60. How does one deal with the anger at having been ignored by doctors for so very long?
This actually says what is happening tome right now. I was diagnosed when I was 19. In my first 10 years I had "too many lesions to count" and I would say well I can walk and talk so I'm ok but I am45 now and and I am not walking so well and the words don't cone so easy. I would often think that I was making some of my feelings up and using MS as an excuse. I went to my neurologist last week and she told me that I am it making it up. I am trying to cut myself some slack. It is so hard admit "in not ok".
I had more damage done in three months from one of those lousy DMDs than chronic MS caused in the previous 15 years, and I never fully recovered from it. Rebif was the worst experience of my life and it left me with tinnitus. My ears have been ringing nonstop for the last 17 years.
There are so many medicines that are ten times better than any of the three injections. I’ve been through them all. Along with Gelynia. Nothing stopped my disease progression until Lemtrada stopped it 8 years ago. Those side effects were way worth it obviously. Boster is who got me on Lemtrada. Have to drive 6 hour to see him but it’s so worth it
Diagnosed with RRMS in 2011. Now I have Secondary Progressive MS. My recent MRI showed a few more lesions on my right parietal lobe and new cortical lesions on my cerebellum. I'm a little scared. Most days are pretty good, but the days that aren't, *really* aren't.
When I said this 20 years ago and demanded the most effective medicine I was treated like a nervous patient. Luckily at every stage of my journey I managed to find a good neurologist who agreed with me. If only NICE regulations accepted this truth too.
I hit it hard within the first 5 years & every med gave me irreversible side effects of organ or function loss & MS lesions still keep coming. I wonder if I could have been better off without those DMTs
@@imblessed8986 I m on OvercomeMS diet since the moment of my MS diagnosis + restricted it more to Wahls protocol II over the years. I was also vegan for a few years within restrictions of the above 2 diets. Prior to my dx I had pretty healthy eating - exercise habits as well.
This makes me feel better. I have some symptoms that aren't definitively MS, but definitely raise suspicion for it. I've worried about being a waste of resources, in case it ends up being just anxiety/depression. But based on this video, it seems like a worthwhile investment to get it checked out
I've learned more about MS and myself through your videos,than I ever received from Drs. It took six years for the diagnosis. Some of those Drs argue about it,no it's this no it's that. I've even had ppl say you don't look like you have Ms they would compare me to others they know.
Love yiur posts dr , it is truthful and informative . The first 5 years were brutal for me , nany disabling relapses many spots , 10 years from dx still gettung new lesions and guess wheee ? Very abvuous dawson fingers and legs and all organs from dawson . Thanks for these tips and information and i hope one day yiu will say there is this thing that deletes and undos the damage . Thanks from my heart .
This makes so much sense but also has hit me with anger... Why did my consultants not do anything after my first 2 major relapses withing 6 months of each other?!?! Yes i felt like i fully recovered and went to university and lived life as a 20 year old would. But got closer to 30 pain increaed, mobility and cog function decreased. 20 years after diagnosis I can see that progression could have been somehow dealt with, instead of just telling me this is how MS goes!!
My worst structural damage was absolutely in my first years of the disease, but then my progression didn’t stop until 8 years ago and I’m now in remission(5 year of no new disease progression while in no DMT.)
I imagine this is one of the most frustrating things for a provider. I see it all the time too-“I manage my ms with diet, vitamins, etc.” I think to myself “no you don’t, you have just been lucky so far. Thanks for the perspective.
What's lucky? Can you get that in a bottle? How do you know what's going on with them? Do you really believe diet has no effect on one's health? If so, Where did you come up with that idea?
I've found that taking vitamins, minerals and trying to eat reasonably well, does help me to feel a bit more lively. It certainly wouldn't be enough to manage it, but it has helped
IF ONLY I knew this in 2005 (4 yrs of diagnosis, 5 prior yrs of disease), when I refused Neuro’s recommend of Tysabri- all because it was a heavyweight drug & my MS “wasn’t bad enough to warrant that” as my reason for NOT. 😢 Attention got Much worse, as well as other sx. I’ve been disabled since ‘07 mostly bc of cog funct.
Was thinking of going to the Mayo Clinic years ago. My father is upset about my post-stroke followup MRI results. Thinking of going to the Mayo Clinic. Or Mass General. Tired of bad hellcare here.
My case was a bit different: during the first 7 years I had MS, but no clue what it was - over 50 lesions have formed, nicely spread all across my brain and spinal cord. During 10 years after (on old and weak medications) another 50 lesions joined the party :-(
I’m a 2nd Gen MSer. I didn’t show any early symptoms when I was a teen, my 20’s or 30’s. Or at least I couldn’t recall until I remembered a strange headache early in my 20’s that reared its head when I went to do aerobic exercise. The first jump I took, hurt, then the next wasn’t any better. Stopping the exercise, and resting for a few days didn’t stop the jumping pain. By the time my GP saw me, he said: sometimes we develop calcium deposits in our head and they can hurt. My pain subsided and I resumed a normal activity. I also had a small bout of numbness in my 30’s I felt on the side of a pinky finger and the top of my foot. I didn’t see a doctor because it returned to normal after a week or so. My “active symptoms” began later in my early 40’s with nerve pain down my right arm and leg when I failed to sleep for 7 to 8 hours. That pain was something I ignored because I felt proper rest was the key. Little did I know with my first exacerbation, that my right hand would no longer allow fine control to write or type. The horrible spasticity that followed shocked me. The MRI that followed told the story I was dealing with MS, probably longer than I would have ever imagined. I wish I would have shared my health history with my GPS and just consulted with a neurologist every few years to keep an eye on my health and desired vitamin levels. Thank you Dr.B for your helpful advice.
I have such a hard time NOT wondering how long ago this started. I understand it doesn’t really matter. I am treating it and I’m doing my best to live my best life, but…I look back and see signs many years before I was finally diagnosed.
my first symptom (besides being born blind in right eye) was numbness in left leg and arm when i was 17. then it got worse (trouble thinking and walking) and found out close family has it. now 21 and have done my first set of tests (MRI/CT, Spinal tap, eye tests, etc) and nothing has come up besides the eye test as abnormal. beginning to question if my symptoms are real
Who knows if the diagnosis’ are real, but the symptoms are absolutely real. I’m sorry you are suffering so bad. So, the one test that matters with MS diagnosis usually, the MRI. Did it show any lesions? Otherwise it may be something different. But still first glance that all sounds like Ms. Except the born blindness. Thats def not MS. What’s that all about ?
These are word curses. Literally. People can and do recover. I'm battling auto immune my whole life. The more hopeful you are, the more positive, the more you persist and fight, alternative medicine the better quality of life. In a lot of cases meds accelerate the disease
Thank you Dr Boster. Just wondering, does this sound like MS? “When eating lunch, the left arm was unable to extend, the left elbow and bend in the left arm (opposite to elbow) was “itchy” and “spikey”, the pain was on and off in waves for about 30mins. Stiffness in the 3rd, 4th and 5th fingers which lasted about 10mins.” Thank you.
I’m 43 and was diagnosed 2 months ago. I can track my first clear symptom (half my face got numb) of ms 13 years ago, but stupid me didn’t know it was something serious and that I should go see a doctor. I had my first treatment of rituximab one month ago. The neurologist told me they counted more than 40 lesions in my brain. (Which explains a lot to me cognitively, fatigue, etc, etc.) So what conclusion should I make considering your video. Am I doomed?! I’m really worried and don’t know what to expect in the future..which is soon. 😢
i gave this vid a thump up i was thinking this way earlier today i had many relapses they remitted i stopped dmt by choice over 5 yrs i dont know what mess accured during thay period of time i look ok و تهب اقول ما فيني وانا فيني وانت فيني اختناق شعور يبكيني but im not ok cant climb stairs even 4 or 3 stairs sometimes 2 even after gilenya what is it gonna do to me and what MS has cookef
What do you mean by sets the trajectory for the next 20-30 years? Your video cut out, can you clarify ? I’m 15 years since diagnosis I have always been on a dmd. I was having lots of new brain lesions over the last 10 years but no real 💥 relapses, I have RRMS. Unfortunately everyone drug except RITUXIN was a failure . I feel like I’m getting stupider by the day. My cognition is really bad and getting worse. My question is: is that what my trajectory is going to be? almost dementia/Alzheimer’s like? Not that I expect you to answer, but maybe someone else knows.
May want to look into alpha lipoic acid and lions mane mushroom for your cognitive issues. A lot of people have good success. I also play brain games to try to make new neural pathways. And I feel like it’s helped a lot. The trajectory is math term. Meaning that if you start down a path going down words, you continue to go down.
What is the treatment you mentioned on your RU-vid alltusum ?? However you spell it? My wife has progressive Ms she’s in Ocurvous infusion it’s not helping like at first she needs a new treatment please let me know thanks
Its only been 3 years since i started having burning in the muscles, muscle weakness, muscle twitches, muscle fatigue. And my whole left side feels useless. My right side is starting to get affected like my left side. How can i get diagnosed when my mris and nerve tests come out clean?
So what do you propose dear dr my wife is on tysabri she is 29 diagnosed 3 months ago what should she do to have the best prognosis? P.s we live in iraq and there is no lemtrada or hact but im planning for her to have one of these abroad the thing is im not rich and i could only do one of them which do you recommend if you were in my shoes ? Plz answer i need you recommendations
Nobody seems to understand what u going thro People mock ,belittle ,taunt n judge ù Its a hard life Have ms now 4 yrs age 57 on rebif 44 but felt symptoms for many yrs before cos doctors had not diagnosed it
I got Transvers myelitis in 1995 from a hepatitis B vaccine. No vaccines for me, here in 2022 at age 66 I was in the hospital on a ventilator with covid. I was in the hospital for 6 months. Upon discharge, I was paralyzed. TM damaged me but could always still walk. Not anymore
Sounds like you have vertigo. Sometimes it can be positional and there are things you can do. You can find it on RU-vid. Mines not and I don’t have anything that fixes it. It comes and goes for me if you’re feeling faint, you might want to have your blood pressure checked.
I am no doctor but I am trying to eat super healthy....no carbs, sugar or alcohol but lots of veggies and meat/protein. Started juicing and taking vitamins and tea to detox. Gotta get all the junk out of me and put good food in. Weight lifting too.
