Last reply 1 year ago
All that remains is sue-is-side

Lengthy post. So, if you don’t stick around I understand.

I am in the process of being diagnosed. Meaning, I haven’t done the lumbar puncture yet but I know what the results will yield. Seeing as I have every symptom in the book. Even the more rarefied ones. Lucky me.

I have had symptoms since last September. I’ll never forget it. It happened so suddenly. Overnight my whole world shattered. I have tried to remain calm since then. I felt off while playing poker with my cigar buddies and excused myself from the game that Thursday night. The very next day (Friday) I was in the gym working out my favorite body part legs. When all the sudden my whole lower half went numb. I thought I pulled something, so I continued on finishing my work out. When I sat down in the locker room my legs were as red as a lobster. I thought that was odd. After the workout the numbness went away so I thought nothing of it. Assuming it wasn’t anything major just pulled the wrong way during a particular movement. Nothing occurred outside of that during that day. Once 3 a.m. rolled around though I woke up suddenly to a numbness that washed over me like a waterfall from head to toe and I felt my breath leave me briefly. I felt rubbery and it was hard to speak. I immediately rushed to the ER. There they tested me and ran all kinds of tests. Blood tests, Urine tests, physical tests. They came back with nothing. No explanation as to why I am experiencing what I am feeling. That is when I demanded to see the head ER doctor. This guy walks into the room sits down on the table and looks at me with a questionable gaze. He looks up at me and says “I don’t know what you want from me, you’re a healthy young 26 year old male. Everything came back negative. No diabetes, no stress, nothing. I don’t know what you want me to do.” I told him I demanded answers. That I wasn’t leaving until he gave me at least something to go on. I tole him you just don’t wake up numb one day and lose feeling in nearly all your body overnight. He said” The only thing I can tell you is that it’s one of two things. It is either Guillain-Barré or MS. So he said let me check your reflexes. So I obliged. He tested them, I passed with flying colors. He then ruled out Guillain-Barré. So it left me with one option MS. So, I asked him to test for that. He took a 3-inch hypodermic needle and started poking me all over asking me if it felt sharp. To which I replied no. He said it was odd but sent me home anyway. Long story short, the very next day I had my first exacerbation in the middle of the mall and was rushed back to the same hospital and had an MRI and the doc telling me there was a questionable spot on my T2 section of my white matter of my brain.

About 2 years ago I relocated from Ohio to Dallas Texas in search of a new life. Looking to get out from underneath an abusive relationship with my family. They’ve never supported me in any faction of my life. I have always been the black swan so to speak. The rebel without a cause. Pushing limits, trying new things, going on adventures & seeking risks is how I lived life. I have always been a firm believer that life should be experienced first hand not vicariously. I loved new experiences and meeting new people in new places. One of my greatest joys of life is traveling and getting cultured. Anyway, I was enjoying my new life in my new found home in Dallas and taken quite nicely to the state itself. I loved the people and the experiences that they brought along with them. I found my self well suited in this new town and grown quite fond of it as it grew quite fond of me.

I have finally in my 25 years of existence on this planet found myself happy as I have ever been in my life. I have gotten away from my ill-gotten family that appreciates nothing and only complains about everything. I love life in its very essence. I appreciated everything I have ever experienced. On multiple occasions I have lost everything outside of my health and had nothing to my name. Not even a home. Which was okay. Homelessness is not that bad when you have been through it a couple times. I have always had the mentality that if I still had my health and my mind, I could conquer anything that came my way. I have found my way out of those situations and was doing quite okay for myself since the relo.

I have built up a life for myself here in my new found home and was enjoying every bit of it. I have friends that have become family and I am proud to say it. I have made some very bold moves in my career and I was starting to align things to build my dream life. The one I have always seen in my head as a kid. The one everyone wants to have. You know the one, exorbitant amounts of money, freedom to travel, big house, nice cars. Freedom to come and go as you please. I busted my ass for this and wasn’t going to let anything get in my way.

I have made several plays. I was mentoring and being mentored by guys that made massive amounts of liquidity. I am talking mid 9-figures ($500-$700 million) to their name. Captains of industries type. What I have always dreamed of being. I finally felt as if I was on the right path in life and had enough belief in myself and my abilities that I too could become like them. I have always wanted that for myself and my family even through the bullshit they put me through. I have finally found the right course in my life to achieve the only dream I have ever had since I was a child. I have never wanted anything as badly as this in my life. Like Michael Jordan was born to play basketball, I was born to do this. I couldn’t tell you how many financial reports I have read since I have been 7 years old. Every day since then I have read about all the greats in business and emulated them. Studied them until my eyes bled. I idolized all the billionaires like people idolize sports figures. People who changed the status quo of the world is who I wanted to surround myself with. Gates, Buffet, Bezos, Branson, Zuckerberg. All those guys I have studied them to a T to better understand how they did it so I could change the world too. I longed to be a mover and a shaker like them. Change the world drastically for the better.

Long story short… This bullshit happened and drastically changed my life. Forever. My odds to never get this disease were in my favor. To lead and exceedingly full and happy life doing what I love and do best. But I can’t do that anymore. I had to recant my position in a possible 9-figure deal ($100 Million+) at 26 years old and sell out my position in my buddies company. Costing me my dreams and nearly costing me a friendship. Luckily he was sincere. This fucking disease cost me everything I held sacred in my life. I have lost my characteristics that made me who I was. I was a type A personality guy that demanded respect when I walked in the room. Lead groups of people. Always saw the good in people and cultivated future leaders.

My dreams gone that’s all I ever wanted in my life is to be great and go down in the history books as one of the one’s who changed the world for the better.

To put it to you all who decide to read this, it’s as if Michael could never get the chance to play ball or Einstein not being allowed the chance to push theoretical physics to new limits. It’s on that magnitude. I ate, slept & breathed business day in and day out. To have it stripped from me along with my mind and body is a death sentence to me. If Beethoven couldn’t play music, would he still be Beethoven?

There is no more rope left for me. If there was, I would most assuredly hang myself with it knowing what is coming down the pipeline. I have nothing left to live for at all. I am not the kind of person that can just go do something else with my life. That’s like asking Tiger Woods to go play football. It just doesn’t work for us.

So my question is to you all through all is this. Knowing what this disease does to an individual that has it. How do you get up everyday and face the world after loosing everything that you identify with? Because I can’t fathom a world in which I can’t become what I want to become. I just can’t do it. That’s the whole point of living is to become what you most identify with. Not just to eat, shit, sleep and then die. I can’t do that. It’s not in my DNA.

So please if you make it through this post let me know. Because I currently don’t have an answer.

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pommykev
1 year ago

If money is so demanding for you then here’s some of the worlds richest disabled people.
Walt Disney – $5 Billion. …
Stevie Wonder – $110 million. Stevie Wonder is an American musician, singer and songwriter. …
Stephen Hawking – $20 Million. …
Patty Duke – $5 million. …
Christopher Reeve – $3 million.
MJ Fox – $65M

Just don’t let the illness get to you.
It’s only an obstacle.


merfield
1 year ago

Well, that’s left me pretty much speechless. What a tirade!!!! Part of me feels huge sympathy, part thinks how self indulgent. You are young, an A male and in shock. Life has a habit of biting you in the bum when you least expect it and that’s what it seems to have done to you. On this site you are speaking to many who are going through the same as you, some with kids, some alone, some with elderly family members to care for. So basically you are NOT the only one feeling desperate. Don’t get me wrong, I AM sympathetic but my advice is to read some of the profiles here and see for yourself what others are going or have gone through. Read and think of others in a troubled world…..if you are the A successful male you think you are, why not redirect your impetus to helping other less able/fortunate. THAT would make your life worthwhile and give you cause to feel the success you need. Do take heart….we are all here, doing our best to cope and support each other. You sound too strong and young to to even think of sue-is-side. Good Luck with the new constructive stage of your life, and keep posting but NOT SO LOOOONG, please. I need a cup of tea after all that…xx


feeblefee
1 year ago

Ok @lostdreams89
Here goes, and I apologise if this sounds harsh but I am just trying to give a different perspective. As they say here in Scotland “Pull your fucking socks up, and get on with it”. Listen pal I resonate with a lot of what you’ve been through, but surly having gone through all that, you’ve came out the other end a much stronger person?
Truth spill coming up!: For all I have been hit with in my 31yrs, broken spine and pelvis, drug abuse, homelessness, physical & sexual abuse, loss of family and even criminal convictions. All of which I dragged my self out of and have been living a rewarding happy life for the past 5yrs (with my brutal family😉!), why the fuck would i let something like MS get me to the point of sue-is-side? To me when I got the diagnosis, I thought “Ok fuck it, I’ve been through worse, this is a piece of pish!” I’m not trying to get on your case honestly but sometimes reading what others have been through and came out of can give you strength and hope! Don’t lie down to something like this, you don’t know how quickly the disease will progress in you. So why cut your life short? Please, as someone who has came very close several times to never waking up again. Looking back I can’t believe I was ever in that frame of mind and let myself get so low.
I’ve sent you a friend request if you want to talk about anything!


red-suzuki
1 year ago

Well Amen @merfield , Yes I know most folk here Have felt totally hopeless with their lot in life at some time, but check out how some folk here & see how they cope, they get mechanisms in place to cope, you know they have had to re-adjust to what has happened, what is happening & with no crystal ball either for the future on what will happen…..Catch your breath @lostdreams89 & aim for some new, future dreams89…..WE know to a certain extent what is happening, it is very invisible to most if not all folk around us, but do you know what that person over their or their or their is going through….as merfield says ‘Read and think of others in a troubled world’ & re-aim yourself & set your incredible talents & try & ‘redirect your impetus to helping other less able/fortunate’ , easier said than done I suspect, as you as a young individual, are having to deal with you & the ‘NOW’, but give it a try….youve found a kind of utopia where you are now….go see if those around you now can help you get on some sort of solid ground…& yes again as merfield says, please keep posting. keep it real my friend, one day at a time. Red


stumbler
1 year ago

There’s some good words and advice above, @lostdreams89 .

I’m sure we’ve all felt the way you do, although we may not have contextualised it so eloquently. However, we are doing what has been done since time immemorial. We adapt and move on and evolve.

You’re too strong to accept an easy solution. It’s not in your DNA.


vixen
1 year ago

Hello @lostdreams89. I am so sorry you are going through so much. But I completely agree with all posts above. You talk about identifying with ‘things’ that you feel are out of reach. But hey, how about identifying with yourself? Who said anything about people with MS giving up their dreams? You’ve demanded answers from doctors; there are people around with MS who, before the leap in technology waited 10 or 15 years for a diagnosis. And for those of us with MS, guess who our heroes are? Not the 100 million dollar guys and billionaires, but those who commit their lives to the research and medicine which improves – and in most instances – enables us to carry on being who we are and leading full and active lives. We all get the anger, denial and bitterness that you are feeling, we’ve all been there. Who knows, your diagnosis may not be MS. But I would be devastated if anyone tried to tell me that my life isn’t full, active and meaningful. Dealing with MS has made me a better me, because I have built up the inner strength to face it. My life hasn’t quite gone to plan either. But I have the same friends, home, the same dreams, holidays, favourite films. There is a way through @lostdreams89. I feel so bad for all that you’re going through. I wouldn’t wish it on anyone. But turn inwards, work out what it’s going to take to face this new challenge, and, dare I say keep us posted and accept what ever help is available to you. Life will carry on regardless of your feelings about it. All the best to you.


lozwo
1 year ago

This disease is a bitch. No denying that.. but it will change your perception of the world for the better and give new meaning to life. It simplifies. What is actually important.. and what just isn’t..

I’m sorry you are going through this. It’s beyond scary. I can see your not in a head space to see outside what you are experiencing. For me, my most incredible achievements in this life have come 10 years after being diagnosed. These “achievements” are very different to yours, but still, so fulfilling and bring me great happiness.

None of us like this or wanted this. Regardless of “what type of guys” we are. But you WILL get through this and life can still be beautiful..


edmontonalberta
1 year ago

Life is a journey & we all know the destination. If you choose to get there quicker than you should – I will not attempt to talk you out of that…

What I find interesting is your definition of happiness. Money? Really?? Pieces of paper??? My definition of happiness is a great woman & solid friends who stand beside me when life throws challenges my way – I invested my time properly throughout my life & have that…

All I will suggest is to sit down & seriously think. Is there anything else besides money (and what it can buy) that makes you happy…


potter
1 year ago

Once diagnosed I would take what money you have and find the best treatment you can. Put your energy towards researching your illness. Once you get your life back on track you need to find real love, not superficial love. Your young you can start a new life and leave that old life behind. My husband and I are old hippies we have been together for 46 years. We spend almost all of our time together still, we enjoy each other’s company. We have never been focused on money, I am a artist and housewife. We decided early on having a good family life was more important than money. My husband made more money than me so I stayed at home and took care of things. I worked off and on when we needed some money but family was more important. My son married a lawyer so he is the one that stays home and works part time jobs and follows her career around. Your life isn’t over it is just changing, have a good cry and then put together a battle plan you are at war with MS. Potter

@lostdreams89 MS can be an adjustment but I think you are possibly mixing up your issues with your dreams and MS. From your post above its still not clear to me how you wouldnt be able to achieve your dreams.

I can say truely say that I believe Einstein would still been Einstein if he had MS. Have you read much from Steven Hawking? What he as is far worse then MS and he is still Steven Hawking.

“If Beethoven couldn’t play music, would he still be Beethoven?” How much do you know about Beethoven. I would argue Beethoven IS Beethoven (as we know him today) because of his disability. He lost his hearing in his 20s. He gave up conducting and composed much of his best work we know today when he was deaf. What skill do you have that you think MS will stop you from using? You had to backout of a $100M business deal because of?

“Gates, Buffet, Bezos, Branson, Zuckerberg. All those guys I have studied them to a T to better understand how they did it so I could change the world too. I longed to be a mover and a shaker like them. ” What did you learn from all your study about them? What was the common thread in all their lives?

MS is not a death sentence. Its likely to be managable for many.

“How do you get up everyday and face the world after loosing everything that you identify with? ” I think give yourself a year or some time period to figure out the answer to that question. You might learn something new about yourself you didnt know.

While not MS related I would recommend you read (or listen on audio) to the following book. It is a story of a person that enjoys what you enjoy. Lived a life with travel. Was homeless and lost everything many times. I believe it has the answer to what you are looking for. If you really are as Type A is you describe I believe you can work through this.

https://www.amazon.com/Subtle-Art-Not-Giving-Counterintuitive/dp/0062457713/ref=sr_1_1?s=books&ie=UTF8&qid=1495398537&sr=1-1&keywords=the+subtle+art+of+not+giving+a+f—+mark+manson


red-suzuki
1 year ago

Hey, we all cry for help at some point, your posting speaks volumes…please don’t give in to your feelings….be strong, Its another challenge for you to get over….believe me, you CAN do it….


uma-catlady
1 year ago

hi
I dont think you can let the disease rule you and your decisions …
u r not disabled! not yet and even that should not stop us
we will .. i and u .. learn to live with the disease … alter our life styles … not our dreams …
be as well as we can be and continue with our lives and dreams …!!
best wishes for the new and different life with due adjustments!!


twinhawk
1 year ago

Hi fella. I live in Texas as well. I was diagnosed with Muscular Dystrophy when I was 19 yrs old. There were symptoms before that but that was when I was diagnosed. I wasn’t sure what to do I went in to depression for a while but then I realized that it is just something I have to work around. Figure out new ways to do things and still live my life. I now am mostly bed and wheelchair bound but I can still walk alittle. Most recently I was diagnosed with MS. This year actually. I am now 29 yrs old. My twin also has md and I hope she doesn’t also have ms. To me its just another thing, its ok. I can deal with it. I always wanted to have children but I ran out of time. Luckily my twin has 3 awesome kids. I love them very much and they give me strength. You can get through this. Its just an obstacle to get past. Your life is not over. You can live with this disease and thrive. You just need to find something to fight for. For you I think that would be the way you want to live, the things you want in life.


eigenhater
1 year ago

I think it would help talking to someone who is trained to listen. They tend to give helpful advice and help you find a new route through life.

My entire life had been built upon two things; basketball and mathematics. I could have played semi professional basketball but MS took that away from me. I was planning on getting a doctorate in mathematics but I can’t even solve small problems around the house and I can’t even finish my degree. Reading was my escape in life when stuff got too rough but MS has taken that away from me as I can’t take in what I’m reading. I’m going to resign from work this week as it is too fast paced for my MS-riddled brain to keep up with.

The funny thing is I’m totally cool with all of that. I went through a severe bit of depression recently, although that was brought on medically by the MS and I had no control over it, but coming out of the other side I realise that all the worrying is for naught. You have MS. All the self pity in the whole god damn universe won’t change that so you basically have to live with it. I’ve stopped caring about the effects MS is having and how my life is falling apart and now I just take one day at a time. Life is far too short to worry too much, enjoy what you can and always try to take positives out of every situation, no matter how bleak the situation may seem.

I honestly understand your pain, it’s tough to go through these things. But people like us can still lead normal lives with the right medication, just keep a positive outlook on life and talk to someone!

All the best,

A mathematician who can’t do maths.


cameron
1 year ago

When I was diagnosed in 2003, I felt very similar. In fact, the neurologist said he was more worried about my mental state than about my MS. I feel sure he would be having the same conversation with you! Quite a statement, though – to believe that mental issues were a more serious problem than what was going on with the MS. I had no idea, at the point of diagnosis, that although MS is certainly a major health condition, it can be either improved or worsened by the way you tackle it. Believe it or not, there’s a lot you can control. It’s a balancing act – getting on the right meds fast, getting as fit as you can be, getting really genned up about treatment options, having the right conversations with your med team….. in short, becoming a model patient. The prize is that you then get to resume normal living. Bumps on the way – probably, but you stay in control. This can’t even begin to happen, though, while your brain is in overdrive and you have ongoing low mood. So my advice is to get psychological help – I was offered counselling and that started me on the right path. I was then advised to take antidepressants and did so. I know I’ll be on them for life, but so what? Back in 2003, I was completely overwhelmed and had a constant fear of waking up paralysed. Fourteen years on, my life is pretty much like other people’s my age. I have an impaired leg, but it’s more a bloody nuisance than anything else. And once you start researching MS, you’ll see that the prognosis for people newly diagnosed now is much better than in 2003. Lots of choice of drug, for example, with the more aggressive ones being tentatively hailed as stopping the disease in its tracks. Decisions to take, maybe some lifestyle changes to adopt…… you need to get started!. xx


cameron
1 year ago

PS – have just re-read your comments and see that although you’re sure you have MS, it’s not actually diagnosed as yet, so what I’m saying is really only relevant if/when it’s ‘official’. Sorry about that – I’m newly back from hols and am clearly the equivalent of jet-lagged! Best wishes anyway, x Kay


swtrixie
1 year ago

@pommykev – you forgot Clay Walker, who has MS, and has spent millions in MS research.
@lostdreams89 – First things first – get a diagnosis. If you aren’t getting the care you need in Dallas I suggest coming down to the Maxine Messenger MS clinic in Houston. Having a good medical team is crucial. I know because my first neuro wasn’t up to date on the treatment of MS, and the first 4 years after I was diagnosed were hell. But again first step is to find out for sure, and if it’s MS we’ll be here for you ☺


brando
1 year ago

Just putting it out there every single person you have mentioned in your post has at some time in their life hit a roadblock and persevered past it to become the great people they are today.

My favorite their being Beethoven a world renowned composer, he considered suicide when he first became partially deaf. He went through his life to find that he still wanted music in his life, and kept at it maybe not doing exactly what he had planned but still he was a part of the world of music and art. towards the end of his life he composed one of his most popular pieces symphony #9 even though he had lost all hearing and couldn’t even experience what he composed and hear the cheers from the crowds listening which were his main motivations for composing music.

To be honest I think you need a little tough love I know MS may be fresh still for you (if it is MS) and to be honest when its fresh you do feel like your whole world shatters but if you just give up because of some disease then are you really comparing yourself to some of the worlds greatest composers, sportsman and businessmen. everything becomes hard so you stop trying for what you believe in. I was told when I was first diagnosed I was never going to play sport again I was never going to go to university, I was never going to be able to do what I wanted. But while being realistic I accomplished all of it, I went to university and got my Bachelors of Electrical, Communications and Computer Systems Engineering degree. I played Australian rules football for 6 years after being diagnosed, I currently practice 4 different martial arts. I’m working as a Lifeguard, Personal Trainer and Pool Technician/Recreation Supervisor for a massive recreation facility that is worth just under 100 million dollars. I have accomplished what I have wanted in life and I have had MS since I was 14 years old I basically had to grow up with it.

By all means vent here this is what this website is for but don’t give up because of MS (if it is MS) you’re young, only 26 I wish is was 26 when I was first diagnosed it would of made all the kids in high school who would tease me for it, all the teachers, doctors, family members, friends and nurses who told me I wasn’t going to be able to achieve anything I wanted at the time in life and just be realistic with limitations. I refused to take that as an answer and I did physio, studied and took my medication consistently until I could do what I wanted again.

If you are as good as you say you are then stop using excuses like MS to stop you from achieving what you want in life. It’s probably going to be harder to accomplish, but this is when you ask yourself is it worth it? Do I want to achieve what I want in life or am I going to let a disease take that away from me and control me for the rest of my days?

if you ever want to chat don’t be afraid to come back on here, I hope everything works out well for you.

Brando 🙂


rachaellouise
1 year ago

@lostdreams89

I think it’s a good thing you have been open about how your feeling. It’s not easy .. What I can say is I was diagnosed in July with MS and I’m so new to this like yourself . I have not figured out how I am going to live with ms yet either . I think it’s normal to be so scared and not know how to.
I wouldn’t throw in the towel just yet. Although I’ve wanted to many many times . I’ve had all the similar feelings as you and others. I would hold on to hope! Hope is your best friend and try and fight this … I think you will because you are a fighter your life story shows that .
The thing is I always think of rocky balboas sentiments it’s not how many times you get hit but if you get back up and keep moving forward . I’ve been down so many times and felt I wanted to die and I’m done and can’t take another day but you know what it’s wether you stay down or wether you get back up … .. It’s okay to go down but get back up when you feel ready don’t stay down forever .

Why do you think life is about all about money? You seem to be wanting money for all the wrong reasons. Yes money buys some comforts and healthcare costs etc but that’s it!
If you want to be told your fantastic through making big sums of money then your ego is getting in the way that won’t make you happy ….. That’s not how you get your worth by showing off to others and being competitive ….

Can I ask why do you want to hang about with bezo, warren buffet, Branson? You don’t even know them they might be idiots . And if they were idiots would you really want them as your friends. None of us are that special – as Dali lama says we are just 1 of 7 billion people . We are all going to the same place … As Steve jobs said ” we are all dying ” so true it’s just when ! The world will carry on without any one of us …

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