I had a MS attack 29 month ago. Increase of 32 lesion's [ from 2 ] which has changed my life with MS tremendously. I Cant hold myself without supervision in my wheelchair anymore. My hands are contracted, left shoulder hurts constant and my arms are week without any use.
Approximal 8 month ago my right knee gave up on me. Bending my knee is torcher
Just a side note, someone sacrificed his Job and more to provide 24 hour care to me since over 3 years. He prevented Nursing home.
I need to talk to someone, i need help
My Neurologist is no help. My journey with 4 infusion Ocrevus has caused hospitalization, Pneumonia, upper raspatory infections and Sepsis. The infection started 3 to 4 weeks after the infusions. My all overall condition is worsen.
Someone send me an Angel.
37 years old and bedbound
Written by
connexa
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i'm so sorry you're struggling. it sucks to be ill for everyone, but there's a particular pain when you're young (millennial here). i was watching old 'black-ish' episodes, knowing they'd get to the pandemic at some point.
when the world shut down last year, my mum went utterly bat***t and i couldn't understand why. watching those pandemic eps helped me. i always fear the future, i never know what's going to happen to me next and i have horrible illnesses. for a while last year, people lived in my world. they were even homebound!
so if they all lost the plot over a few months, can you imagine how they'd react in our broken bodies? btw: dystonia and ataxia confirmed, possible ms (spinal lesions and inconclusive brain mri changes). when i leave the house i have to prep for it. i rest up as much as i can, have to limit my time out (with a motorised chair) and have to recover when i get home.
i'm glad you've been able to stay in your home. a few years ago, i looked for nursing homes with younger people in them, but couldn't find a thing. that would be scary.
i know words don't fix it, but i've found knowledge and great support on this site, so keep sharing. we're here.🤗
I know the feeling. Yes. Friends and other people are stepping into my world due to this pandemic. And they can't even understand how can I feel doubly isolated in the summer, where they could go out in the heat for a walk, swim at the beach,.... my husband and I missed going from one a/c place to another. I was diagnosed when I was 28 and have had MS for 34 years old. I thought I was the only one who lays around to get enough nerve to brave the world (God willing), do what needs to be done and return back to recuperate. I am praying that my latest spine and eye problem is temporary. I am grateful for my husband willing to take care of me. It is scary to think what I may have to do if he leaves this earth before me or becomes ill. (He has a miraculous, truly divine intervention, kidney transplant 25 years ago.) So I feel overwhelmed at times with my knew spinal and eye problems. Muscle spasms are worse. I didn't think that was possible. But be grateful you are in your home with someone who loves you. Someone who truly wants to take care of you just not because it's there job. So we laugh, watch movies, and if I have the nerve and feel up to it, we go out. He is retiring, I wish it was when I was "healthier", but it is still in my home with much love. No one wants to be ill or a perceived burden; but that's the expectations of our society. To be totally self-reliant. No one is totally self- reliant. If he didn't get his transplant he would have to be cared by me. I am blessed that I only waited for 7 years before he received his miraculous kidney and we had 2 children. Some of us, are just prematurely aging. Enjoy your blessings from above. It is hard. But try to do so. We do care about your circumstances. Pray for a miracle for all.
Good Morning, Connexa! I am so glad that you have been able to stay in your home. In reading your post, my first thought was that you had already found an angel- the person who quit his job to stay at home and take care of you. I was diagnosed at 31, and have now lived with MS over 40 years. It does help to talk with someone who understands what you are going through, and this site has many wonderful people who all share one thing, every one of us has MS. Please keep sharing and stay in touch. We care about you, we know what it feels like, we have experienced it, we are here for you. My thoughts and prayers are with you.
Prayers are with you and fortunate to be able to stay in your home 🏡. That’s always a fear 😧 for most of us and not a fun place to be. With my bout with cancer ♋️ it set of my ms and I had to go to a assisted living for a couple months. There was several people there with ms both male and female and in there 40’s and 50’s and one 67. All were in wheelchairs 🦼 but had great minds 👍🏼. I was very fortunate that I improved well enough to go home after a couple months. Hang in there and prayers are with you 🙏🙏🙏👍🏼😉🐾🐾
Sending you lots of good thoughts. You can always share whatever you need or want to share here. People understand because we all walk with the same disease. Keep writing to us! 🤗🤗🤗
Hello Connexa, I'm so sorry to hear your story. I have MS and am always so scared of what may vcome of me in future days. But please, I would urge you to reach out to Dr Terry Wahls. She's on Facebook, and is an incredible woman. She's overcome ms...from being a total cripple in a wheelchair to being back to her old life of her physician duties, helping people as she always used to. It's just a miraculous story, if you haven't heard it by now. Her books are extremely helpful also, but I would definitely get advice from her on what you can do to try to help yourself. Alternative medicine doctors are the way to go! Please try this suggestion. There's definitely hope! I'm praying for you!!!
So sorry you're where you are now healthwise. Sounds horrible. It is. I remember all too well what it was like. I spent years in a horrible state of lots of m.s. ailments, essentially bed bound, unable to reader even watch TV. Life seamed like a horrible blur back then. The key is to never give up. I always pushed as hard as I could. For along time (years) I simply existed. But always kept pushing myself. My neuros had me stop my DMT's after a year and a half of non-stop flu like symptoms, fevers, shakes.... All in cycles with each injection 3 times a week. Did 3 different types over the years, some better, some worse. Just lived with the side effects without much complaining because if it was the price to fight progression, so be it. When I stopped the DMT's, the next year or so the need for other drugs also stopped. But I got much worse. I drifted into the fog. But always fighting, I stumbled upon not eating kept me from drifting into the fog. So I held off eating till dinner every day, when I would quickly go back into it. I found juicing fruits and veggies kept me out of the cog fog. I juiced using a cheap juicer. Played with different combinations. But always just fruit and veggies. Eventually over years to where I am today, eating healthy, still mostly fruits and veggies, back on solid food, with small portions of lean meat, fish, and seafood. The important one, stay away from processed foods. Do you know what all those things in your processed foods are?
For years I could barely make it a few houses worth walking with a cane. Kept pushing myself. 5+ years later no cane, and I strive for 10K steps every day.
I strongly believe what you eat and determination to never give up is what's needed to overcome m.s. Am I symptom free, hardly. I've got a long list like everyone else. But haven't had a relapse in over 6 years now? I'm told I'm probably over them for good. Still have much work to do, and still getting better. Not worse. Slowly.
You can too! It isn't easy. Try living off of juiced fruits and veggies till dinner for a while. I saw almost immediate results keeping me from drifting into cog fog. Did that for over a year.... Again diet and determination. Never give up.
Connexa,I take it you live in the US. I don't have anything that is going to help you physically but someone who may be able to help you mentally.
I see a psychologist that only deals with MS. She is hard to get an appointment with her but I will email her about you. Respond back to me at jeepjeff99@yahoo.com and I will provide contact information.
Hopefully she can help you get things off your chest.
Thank you, i want to share with you that since 8 month my Knee hurts to a point of torcher. MRIs showed a small tear in my Meniscus. Running(wheelchair Joke) around from one Orthopedic and Neurologist and primary Health provider, trying to get an appointment with Pain Management; NOTHING.....
We had a Tenant from England, his last name is Eccles.
I acknowledged through my Boyfriend who is very Spiritual. Not a Bible thumper, more very observant and full of - getting things of a magical way together.
He believes that all of us have a purpose. Even having a name like Eccles. Nothing is without result; like 1+1=2.
Take a look at your encounters. If there is a result of acknowledging a result then magic happen.
I have through many years untreated injury and getting Steroids infusion a condition called Sonk
Spontaneous osteonecrosis of the knee (SONK) is a painful knee condition of idiopathic or unknown cause that occurs spontaneously. It is a distinct clinical entity with no consensus regarding the etiology of the condition. SONK is the most common form of osteonecrosis of the knee.
Here is where the magic is. Eccles is the Doctors last name.
And this is what my Angle does. He looks for connections in Names, events, Songs, Numbers etc. NOT in any way noticeable what he does or how.
He just shared with me what he saw.
Nothing in our lives is without purpose, even my MS has his purpose.....
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This is Fabulous! Congratulations MSAA!
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New to MS and learning.
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Here is a letter to the people in my life who I call the normals. I hope it all fits. I can be a little mouthy from time to time.
