🧵 Update and Thank you!! I appreciate your support. I appreciate you all so much!!! I knew something was wrong but I didn’t know how bad. I am going through a major relapse and rapid decline. I read my Neurologists report today and cried. I may not have another remission. That is scary.
my heart is so sad to hear this. sending positive vibes.
Much research: Try Contacting BioNtech, the german company that developed the 1st MRna vaccine. They are doing many trials.. www.biontech.com/int/en/home/...
This may sound like nonsense/you probably have already heard it before For 2 weeks no gluten/no breads etc. no cheeses. No coffee, pops, or chocolate. If poss wear lighter "strength" compression stockings. I know someone who handled MS this way when feeling a "flare" now at 66, no active MS/scans.
I am stressed and that causes more issues bc my immune system starts over reacting and attacks itself/my body when I’m stressed and sick. We still haven’t figured out why I have enlarged lymph nodes. They said it could be from Kesimpta.
It could also be an infection or another autoimmune disease. I may need my lymph nodes biopsied. They are so swollen and sensitive that they can be visibly seen and cause issues swallowing. Kesimpta has also caused major issues with upper respiratory problems.
When I switch sites each month for my injections I lose control, coordination, and strength of the arm/leg that I injected. I have also fallen several times from a new symptom of foot drop. Neurologist said we are probably in secondary progressive phase.
Secondary progression MS is where there are no longer remission periods of disease and it’s a steady decline. SPMS is a stage of multiple sclerosis (MS) where a person experiences a gradual worsening of neurological function over time, following an
initial period of relapsing-remitting MS (RRMS), meaning their symptoms steadily decline without significant periods of remission or improvement; it is essentially the progression of MS after the relapsing-remitting phase where disability accumulates over time.
Thank you everyone for your support and your kindness as I am trying my best to keep going. I’m researching and reading about this new phase and learning my new normal. I have always said it may be a struggle but everything is figure outable as long as I keep going.
I have 3 people who are my strength right now. Who are my light and carrying me. All of you have also been my light, my strength, my support, and my safe place. I will forever be thankful for each of you!!
www.sciencedirect.com/science/arti... "Neurotoxic properties of chemicals found in fragrances have caused testicular atrophy in lab animals as well as myelin disease." ourlittleplace.com/health-risks...
Music is so important in times of stress. It can lower the cortisol levels and calm the heart. Nature calms too.
You are a warrior. You will survive this. We've got your back. 💙
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You can do get through this. It is scary as all get out every time we get neuro reports. And you want answers to outcomes asap. But you have to let it play out a bit. So many times I’ve had a weird latent infection somewhere that makes it look like a relapse and then poof - all better! Godspeed!
Will send you a little joy everyday. You make Bluesky a wonderful place to visit. With all of your courage, empathy and strength.
sending you hugs. MS is not fun. I use Ocrevus but I’m looking for an alternative to it.
Tysabri would be the opposite of Ocrevus. I was on it for 8 years. If you are still RRMs and you are negative for JV then that would be the option I would consider. There are a few others but Tysabri worked for me until it didn’t. There are risks with other meds that I can’t take due to my health.
I’m hoping to find one in pill format that I can use.
There are several options. I have always had to have infusions so I don’t have experience with MS pills. I do know that Mark Cuban does carry some MS meds on his website. Not many but they are cheaper if you have to pay for them yourself. I looked into it they didn’t carry any of my meds yet.
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I will be sending all my positive Karma to you.💜💔💜🖖🙏📿🕍🕌
I wish you God's strength during this trying period. 🙏🏽❤️
Come over to my house. I have loads of good comfort food to warm your belly and friendship to warm your heart. I’m also a cancer survivor with a compromised immune system.❤️
Ugh the tears 😭!! Dang that was so sweet!! I’m bawling. Your kindness is priceless. Just the offer, your friendship and support is everything to me right now!!! That is beautiful and shows me how beautiful you are. My sister is a cancer survivor of 4 years. I have seen the the battle up close and
Personal. The strength to handle the treatments and procedures along with the mental strength you have to have to overcome. It’s a true strength that you show kindness to others when you’re a survivor yourself and you also battle immune issues too. I’m always here for you and forever grateful 💙🤗💙
How are you feeling?
I meant that truly. You are always welcome in my home. Whether you need silence, someone to listen as you pour your heart out, or someone to shake things up to help you take your mind off everything and to just laugh out loud and have fun. Just let me know.❤️
I am so very sorry. Don't give up. 💝
I am so sorry. I too have MS. It’s a terrible disease. Hope you get some answers soon about why your lymph nodes are swollen. I’m sending positive and healing thoughts to you.
I appreciate your kindness. I hate that you understand this. I have to see an ENT. I’ve already seen my primary, endocrinologist, my GI, and Neurologist. All of them with no direct answers on lymph nodes. Onwards to another specialist. I’m so tired of doctor appointments every other week.
I truly understand. Please keep us posted. ❤️
Hang in there
Trying my best! Having my up and down moments which is expected with this news. sending a hug!! 🤗 thank you for the support and kindness 💙💙
Kinda been there in a similar situation and I am still here
As a warrior sister and warrior daughter, sending so much love your way. ❤️🙏
So sorry my prayers go to you.
I truly appreciate it. Thank you💙🤗
*gentlest hugs & holding space* Can't fix it, but we can make sure you don't face it alone.
That right there is all I could ever ask for! 🤗💙 that is kindness!!
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Sending vibes of love and light to you.
It is so appreciated! Thank you from my heart to yours! It’s more than I could ask for 💙💙💙
🙏🏽🙏🏽🙏🏽❤️❤️❤️ I wish there was something else than thoughts and virtual hugs! 🤗
I'm sorry to hear about your bad news! I hope things turn around!
Yes, you will. I’ve had it forever and believe me, you can get back. I have and know many that have been so bad and it just turns around. Hang in girl. I worked for MS Society for years and have seen lots.
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Nothing but love to send you. Hugs and hugs and even more tissues. Wish I could sit with you and serve you tea & cookies. You do so much for us on here, wish we could do more for you.
Sending you prayers and positive vibes. Keep your head up!!
I truly appreciate you and your kindness! Thank you sending a big hug 🤗 💙💙
Of course and sending hugs 🤗 right back.
it means a lot!! 🥹
I am sending you so much love and so many healing thoughts from afar. I can’t imagine this struggle but please know that you are in my thoughts!!
That touched my soul! From my heart to yours thank you! 💙🤗
I’m here if you just want to vent or have me tell you something funny or to just cry with you. I’m good for it.
Sending all the healing vibes ❤️❤️❤️❤️
Sending love and prayers!
Sending hugs 🤗 💙 your truly appreciated thank you
Sending you prayers. 🙏💙
Thank you From my heart to yours 💙🤗 sending a big hug!
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As a stranger from far away…giving up is not an option. Reduce your stress right now. Eat well, whatever you want. Watch either the sunrise or sunset every day. Write down all your thoughts, good or bad and take them to appointments. Laugh hard. Be the life you want. Thinking of you ❤️
What do you need? I would like to help you.
