I know I typically share good news, or progressing news. At this minute, I am asking for prayers. Prayers for my family, my friends, my former Drs, everyone including yourselves.
I ask this, because my neurologist, her entire team, and Drs who my medical file that has been shared with those all over the world.... They have no idea why on earth a young person (26) is degrading so quickly. I was told a couple days ago, by my nearly crying neurologist, that I will be on disability the rest of my life. That all the motor loss and cognitive loss, is permanent and won't come back. I was also told, that I will be having biyearly MRI's of my brain and cervical spine.
Currently, they are trying to figure out.... If I have 1 of these 3 other neuro problems. All the while having generalized dystonia.... The other 3 possible neuro problems.... Are PPMS, ALS, or stiff person syndrome. Quite literally, PPMS would be the "best" out of those 3. The other two, are an absolute death sentence.
Please don't pray for me. Please pray for my Mom, who cannot even look me in the eyes without crying so hard. Imagining that she is going to have to bury her first and oldest child. A son. Who she has quite literally watched decay away. Having changed legal paperwork to remove me from the decision maker, because she and many others think I will die before her. Pray for me entire family, my brother.... Who was there on the first day I woke up and couldn't move half of my body. He is in a PHD program and has cried begging me to be tough and strong long enough to see him graduate. He was watched me slowly lose my memories, my physical decline. When I was physically able, having picked up and carried him to literal safety. Pray for my former Drs... Who at the time I responded to with anger at many times. I have let them know I forgave them all as they all cried.... Seeing as a patient they didn't help because the scope of how atypical my neuro problems are, they couldn't even imagine that a 25 year old at that time, would have such horrid issues. Please pray for my current Dr. I am her youngest patient, and doing worse than most of her patients that are at least double my age. her and I have a very special connection. She has had a life very similar to mine and her watching me get worse, reminds her of a sibling she once had. Please pray for all of yalls mental states after reading this. Take time and know how thankful I am for you all. How much you all inspired me to study neurology. To at one time, help myself live and get treatment, then from there help you all gain the treatment you have all deserved. I hope and pray I will be around for many years so I can continue to help all of those on this site as well as others in both real life and internet to not get up and be mentally, physically, and emotionally okay.
At the end of the day./ Please know how thankful I am for you all. Truly. You all have been 1 of a few inspirations to continue to learn and grow, to help you all. Again, don't pray for me, prayer for yourselves and others. Pray for my family, friends, Drs, former Drs, everyone else. I cannot imagine being in yalls shoes or theirs.
I completely agree. I had diagnosed myself with PPMS a year ago. So to hear my neurologist tell me that both her and the MS team months that I might have that. It means a lot.
I have prayed each night, with tears streaming down my face.... Begging life to please allow me to live longer so I can continue to help people, inspire people, and love people.
I simply ask, please pray for my Mom. She doesn't deserve to have a child die before she does. The level of difficulty my Mom has been through is so horrid, I cannot share. Please pray that she can gather mental comfort through these times. Please.
Your love and compassion shines through your post here - thank you - and although I don't pray, I do send all kind thoughts to your family and your doctors etc.
Is your current neurologist now saying that you were misdiagnosed with FND? If so, you may be able to claim compensation for delayed diagnosis/diagnoses which may help with any medical treatment you need. If you have been misdiagnosed with FND your neurologist should be able to do a case study so that the misdiagnosis becomes official.
Getting a new diagnosis - or working towards one or more - can have a huge emotional impact on us and it can take time to process so I hope you can be gentle with yourself during this time. I have a good friend with PPMS who is in her 70s (initially misdiagnosed with anxiety) and another friend with Stiff Person Syndrome who is also in her 70s so your life expectancy may not be compromised much and you could outlive your lovely Mom. The progress with ALS research is fantastic and although that condition does seem to impact life expectancy, it may not be what you have.
I hope you get the answers you need soon and I am delighted that you have a great neurologist in your corner. Personal connections - like the ones you have with her and she with you - can have a good impact regarding how we frame and contextualise our conditions and symptoms, sometimes to the point we can say 'I have x, y, or z (zebra conditions, especially) but it does not have me.'
Again, thank you for your heartfelt post and I send you all best wishes.
I myself am not a religous person. I mentioend prayers seeing to allow people to better understand, I guess. If that makes sense? I do not pray either, but each and everyday I close my eyes and wish life to allow people of the world a better day. Not to downgrade what you said, more stating this.
The type of person I am. I wanted to be a Dr for a long time. In fact, it's only due to morals that I do not. I was able to see how the medical field, wordwide treats people. It has caused a lot of sitting back and thinking. The reality is there is something greater. No Dr truly wants to hurt others. I won't state my thoughts on here, but I have many.
I am not the type of person who gets made and pushes for money, compensation. Why? I would be a dr for free if I was able to. The amout of times, even now in more contact with former Drs. After I told them where I was... They cried.. When I say Cried... I mean hard. They had no idea... Literally the amount of Drs I have had to sit down and hear them say, "Please teach me..." As huge as that feels. I am humbled by it. They all asked, looking me in the eyes on a virtual visit... Tearing up that what they did potentially made me worse. Which, in short... It has. I do hope, if they read this... They do not think I am mad at them anymore, I must be honest.
The issue, and this is an issue across the board... You can have multiple Neuro problems at once. It is insane. FND, we quite literally no nothing about. Drs claim they do, but there are many cases of people being "undiagnosed." In fact, the only reason I am alive... Is because I studied neurology for months... Making a plan to at least have somebody look at me. My current Dr.... Last visit tearing up, when we both thought I do have ALS. Also acknowloging the fact I lost everything, I starved, couldn't sleep well, for over a year really. Due to that, I will die. It has destroyed my body and will continue to.
Why am I so forgiving after stating all this? Because I am pushing myself to live and find a plan to help me.... So I can survive as long as Steven Hawking. A few days ago.... changing what a quality of life is.... even If I am hooked up to tubes, have to speak via a machine.... If I am able to learn neurology, and become a Neurologist, I will do it! I will push and make the world see medical in a new light! Using my ALS as leverage... How so? Because, what do I have to lose? What are you going to do.... Kill me? Haha! You can't kill me any faster than what my body is doing to me haha. I want others to benefit from my suffering, so they don't have to! If I am angry at the medical system for holding onto knowledge and not sharing it with the world.... Then why on Earth would I sue a company over their lack of knowledge on the subject? As much yes... Money would be awesome... But say I did that... I have already destroyed people's mental states. Have changed life for so many people. How? Because almost everyone has seen me lose everything... Slowly getting worse while suffering. Their minds already warped. My mother cried her eyes out when I told her. She still does. My friends can only speak to me in small bits... Why? Because they cry so fucking hard while holding their children. They aren't bad people at all. In fact, I love how they show their emotions, and from my story hold their partner and childern closer. They tell me how much they have learned from me.... Inspired by who I am.... And from those comments alone... I know for a fact, I will make it to Steven Hawkings age! I WILL be the BEST Neurologist in the WHOLE WORLD!
End of the day.... Giving in my current moment... Giving others the chance to live, not suffer... Help have a better quality of life than what I had.... That is all that matters to me. I will never starve again. I have people on my beck and call, if I so wanted. Even my former company... The owner telling me... I will always be part of their family... Even saying, come by and say hi and sit with us as long as you want.... We love... We have no idea how much this hurts... We only know... In your 5 months of being with us... You woke up many days paralyzed... Took your meds... And came in with a smile. Making other people smile... Helping them take care of themselves.... Making their lives easier by your ideas. Truly making sure all of us drank water. Telling us to rest... Matt, we will never be the same without you... Please don't give up.
In my latest years... I am embracing the diagnosis. In fact, I mourned about this a while back. I knew something was wrong. I knew the aggresiveness of my symptoms. Meds that were typically used for ALS and various other things... The fact I needed so much, very quickly needing to up the dose every other week. Symptoms that not just my muscles like in an arm or leg... But my heart wasn't beating the same. All arteries cleared. My breathing was raspier and harsher. I knew well before others knew. I just didn't say it until my Dr did. Which, In a way she didn't say it first? I looked her in the eyes and said. "Dr.... *insert name* You just labeled off 3 diagnosises... The only one that causes what I am going through, so quickly, at my age... That is ALS." She had to hide her face. I told her, "Dr, we aren't talking patient to Dr. We are talking person to person. It is okay, I knew long before we met. I just needed another Dr to say it before I could say it. She nodded her head and cried harder. This may seem unprofesional to many. But, I told her going in, I am bad, degrading so much. Told her I studied neurology for months. And after 2 visits... She realized in some ways, more than other Neurologists did... Even joking with me, telling me to go touch so grass! Go see a friend... You know so much about neurology, continue to study... But go outside, I believe you! I won't stop til we know!" Couple visits later.. This where we are at. She knew, I knew. I told her I knew before she knew. I am her youngest patient by double my age at least, and doing worse than her other patients.
I cannot be mad at anyone on this. I am not saying others should do things like me. I do things like me, because I am me. We are all different, we are all equal. We are all upset and process things differently. I have my passions, others have theirs. Would I implore others to sue for money due to this? I won't say yes or no. I would simply listen to them and hear them. Really more help them know they are heard, and understood. That I am there for them. But, with being who I am, I will never tell them no or yes. That is not my place.
All in all, thank you 210. I am very sorry to hear about your friend with PPMS. Both you and her are so strong. Truly, I am glad we have had various ways to sit and speak before, and help each other. Please keep me posted on how your friend feels and yourself. Neurology is a Tricky road. I love it and hate it at the same time. I love it because it has made me think so hard... Find my passions...
I hear you re not wanting to claim compensation but if you have been misdiagnosed with FND it's important to have this recorded, simply because that could help others in your situation, in the future.
It's great to know that you have good support from your old company and colleagues
Meanwhile I just saw this on Facebook and thought it might be of interest to you.
'Neurology® Video Journal Club's newest series features topics in: Myasthenia gravis, ALS, and neuromuscular disease. Start watching now: bit.ly/3kNsdgQJoin us for future episodes to learn from experts as they discuss recent Neurology journal articles and hot topics in the field of neurology.'
Thank you for asking about my wellbeing and that of my friend. My friend with PPMS is doing really well and has a great quality of life, thank heavens. I am also doing well
There are many things I don't share. About my life with my neuro.
I do in fact heavily communicate with the Dr's that did this. My reasons for doing this and not sue them are my own.
I don't speak about wanting to help people for clout, fame, or money. I eat sleep and pray for others medical needs. Quite literally willing to throw all quality of life away to live and help others.
Yes this response sounds biting. I do not like people who make assumptions about my choices. I offer help to others for free. I walk the walk I talk. My advise, before commenting. Ask more questions. Sit back and really think about whom you ate speaking to.
I'm not mad at you. I'm low key offended by it. Been a big part of this community to help those who need help. I have much more care about people than I share.
I've been part of this community for such a long time. Helped many, that now after all this time.. to be reminded that "Oh people there matter." I know this. That's my basis of hatred with the medical system.
Take this how you want. Thank you for resources to help me. And thank you for letting me know about you friend. I'm also sorry I misrwsd your first comment. I hope your friend with stiff person syndrome is okay. Please keep me posted on them and your health.
Oh Matt - I'm sorry I low key offended you and I appreciate your commentary on this.
My friend with SPS is doing well, thank you, as am I
I hope you enjoyed the Neurology Video Journal Club's stuff
You might also enjoy the Unfixed Media info about Dylan (a person with ALS) and the book being written about/with him. The curator has the same rare neurological condition as I do but we have way more in common than that in that we are both interested in Narrative Medicine.
All best wishes and I'll look forward to reading your book.
Just to give you some insight into my last 24 hours.
1 Friend, today said... She has been so mad for so long the past 6 months. Simply watching my medical decline. So due to this and now that she is happier. She doesn't want to speak to me anymore. Saying how bad she feels and understands if I wish anything for her.
What did Isay? I said to her I am happy you are taking your mental health for your the best. It is okay, I am not mad at you. I know you will be alive much longer than myself. When you times comes and your time in life has passed. I will be there to welcome you and tell you how proud I am of you.
I have lost the complete ability to speak. Meds are taking longer to help me. I have messaged my Dr this. Telling her I am quite literally prepared to lose all motor function in exchange to be a Dr and help people. Give all of my life up for others. To live for many decades, unable to eat, drink, breathe, clean myself, do anything myself. For decades, to help people. What have I gotten back? 3 days of my Dr reading my message.
How do I react? I sit back and think.. what I am asking for is alot. It takes a ton of resources and money to do so. I will need access to so many things. My undying care for helping others will cost people millions of dollars. I know this could mean two things. 1 Gathering people, companies, and everything to invest in me so I can help. Or and this is just as true. Trying to find a way to tell me, that since I have gone so far down the tube without treatment of ALS. There is nothing that can be done. Which, would I be mad? No. I get it. I understand. As hard as this all is... I get it.
I am in the process, just started a few days ago, of writing my book. Pulling all my information together. I know right now, my medical information is compiled all together very nicely so it can be processed off chance I pass.
This is just one aspect. I am not trying to tell you all this to prove to you. In any sense, take this as... This 1 day. Imagine every other day. Everytime I have opened my mouth I told people to rest and take care of themselves. Study medicine for them.
I appreciate you really trying to convince me to do things to better the community. I don't mean to react so negatively to what you said. It just hit a part of me, the only part of me that I have emotion still. Thinking of dying so I can't be here to help others, that is what makes me cry. I mean cry HARD.
So please, 210. In your time of your life and learning, ask do not assume. Ask. You will find more people care about others and health than we all say. I am right there with you. I get treated like crap daily. My voice and speech started going away the last 2 weeks. I have been laughed at. Hung up on. Told how stupid I sound. Pick up very important phone calls and people told me to quit acting. I'm having to think outside the box constantly to these things. What I am saying is, I am right there with you. People suck. People judge. People do not understand. I get it. I live it. I am here. I Promise. I am here for people. Not to defend Doctors. I am here for the suffering people. I am here for people. Not those that are just suffering. I want to live for everyone else. Not me.
Sending my absolute love to you. Bless you for being such a strong and super human being. May you be given everything that this universe has to offer to heal you as it is without doubt your right.
Birdr, thank you so much. If it brings you any internal help that I am, I am. I am learning what it is like to be in your mid 20's from speaking to people again. Hearing the music they like. Hear the things they enjoy! Sitting back and realizing.. They are doing them. What mid 20's people should do with their current struggles. Learning about themselves. Having laughs. Smiling. And... I love it! I am so proud of the world. I am coming out of my little world I created to study, so refresh and liberated, not in a sense of physical and medical whole different thing there. Just Emotionally and morals. Just proud of the people my age. But I am also proud of every person of any age, I use my age as an example I what my current thought process is. I am proud and happy to see smiles on everyone. They all loving life. May not be happy at the time. But they are still working through it all. I wouldn't trade this thought process for anything. I love it.
I also want to let you know that, I almost never look at this site and I don’t remember ever replying before , but this morning I noticed your request for prayer.
I just got off the phone with a good friend, former RN, and my best prayer partner, we both prayed for you and your family.
Thank you. It means a lot. I'm not sure if you need to hop on. If you or anybody need help hop on and let me know. I'm imagine your RN friend can get you help. I'm just letting you know!
Thank you very much to you and your friend! On the front lines in medicine saving people everyday. Thank you both
I don't share every aspect of my neuro. Reasons of this are for me myself and I.
But for thus, when you have a 26 year old who less than 2 years ago.. Went from working outside carrying 50lbs up mountains.
To without meds, I can't hold my head up. I can't speak at all. I can barely breathe. I can move my body, due to absolute weakness. Something stressed my body out so badly that it activated a gene that doesn't activate outside of the ages of 5 and 7. What was going on for my life at those times? Organ failure among a lot of other issues. If j made it past organ failure and everything else at those ages and didn't activate the gene. Could imagine how much stress I would need to activate that?
So yes symptoms alone that is why they are thinking ALS. Because outside of that, it's sit and wait til something happens. The track down that, is potentially without treatment I will die man. Like gone, see ya mates. Not coming back. As Dr what the hell do you do to somebody? I had to literally starve lesrn neurology to even have a Dr look at me. Over a year when I lied to a Dr to see if somebody will take a look at me and help. End of now I can barely function.
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True hope for FND and Chronic Pain
Vision problems
FND Conference - First Report.
