My disease is progressing at an incredibly rapid pace suddenly over the past six months or so. Mind you, I have not seen a neuro since my divorce, I just could not get in to one in Missouri. Here in Kansas everything is wonderful. I have an appt. at the end of Feb. But I made the mistake of reading about end stage MS and I come close to fitting the bill. I have PPMS and thought I could not have relapses, but boy I am having a wicked one now. Thankfully my pain doctor in MO gave me a bout of steroids just in case. I am going to star them tomorrow. I am having to use a wheelchair, which I have avoided for years (full time). I am struggling to breath, do not want food, cannot urinate easily. Someone cure this stinking rotten disease we all suffer so much from! Please! Love to all of my family where I can vent and be afraid, Kelly xx
I am kind of irritated: My disease is... - My MSAA Community
I am kind of irritated
Hugs you know the door to heaven is narrow Rocky and the toughest road you will endure so don’t think it’s over yet
Sorry to hear that you are feeling so poorly! I hope that you doctor can help with your symptoms!🤭
My thoughts are with you.❤️
Kelly, this is surely the best place to vent. I’m so sorry about these changes. I pray the steroids do a great job of getting your symptoms under control very quickly. I’ll also pray your new neurologist there is a smart, compassionate one.
I hope you will let us know how you are. Many gentle hugs.
Be strong sis, u r loved know that in your heart
Hang in there dear friend. Consider yourself a prototype for the rest of us with Permanently Privileged ms, if you were a new car, you would be taken out for a test drive, to see how you could handle the road ahead. There would be lots of bends, some sharper than others, but you are in he driving seat, so do your best, and handle it as well as you can. Thinking of you, Blessings Jimeka 🤗 🙏
Thank you Jimeka. I like the analogy of the car. But believe me, no one wants to be following me right now! 😂🤣 I am not even driving at the moment. But it will get better, I know. I just fell a bit ago and got a good crack on my head on the corner of my nightstand. I need your bubble suit with helmet! Thanks again. Much love, Kelly
sorry to hear that I hope u and ur dr figure it out
Sending you warm and healing thoughts. Hugs🤗
Prayers are with you Kelly 🙏. Hang in there 👍😉 Ken 🐾🐾
Praying that your doctor can assist you so that you can get over this 'bump', Amore55 18 months is a long time to go without your health care team.
Hello Amore55...so sorry you’re going through this...praying the steroids will help soon and your new doc can stabilize you asap...never give up friend🕊💕
I am so sorry to hear you are doing poorly, Kelly. I hope you have someone checking in on you. Stay strong. ❤️
I have a wonderful “Marine” fiancé with me every roll of the way. He has a similar disability, it is his wheelchair I am borrowing. He is a disabled vet who got the bad fortune to get transverse myelitis, please look it up, kissing cousin to ms.
I think you should be in the hospital.
Oh bless u honey xxxxx I am so sorry it’s getting worse, I so hate MS! It’s unforgivably cruel and awful at times! 😟😟😟😟😮😮😮😮 xxxxx
My love and my prayers are with you. May the angels watch over you, and keep you safe and well. Linda
Thank you for your kindness, always so sweet! Love, Kelly xx
Oh no Kelly, I am so sorry you think that. I hope you are wrong and I am afraid with you. It’s possible that you would need to go into the hospital for additional treatment if that is true. The breathing, I imagine, is the most terrifying and exhausting.
I’m glad you don’t have to wait long to see someone and have some meds on hand. Vent away dear, we will all be here to listen and love you.
Also, stop googling. 🤗😘
Hi sweet one! I know, they say a little knowledge is a dangerous thing. You are right about the breathing, it has been quite fearful at times. But life goes on. I believe those steroids will be a lifesaver, I loved that doctor. She did not need to give me any, she was my pain doctor, but said “ just in case” and she was so right! But how are you, V, hubby and baby? I know how exhausting it is. I think of you so often, and apologize for not staying in touch better. Just think, I had 8 of those darling, noisy creatures! What was I thinking? But as adults they and my grandchildren are my joys. I love you and want you to take care of yourself. Love, Kelly xxx
Have the steroids made the breathing any better?
She’s a blessing then!! I feel that my OB was one too, she gave me steroids in recovery, and I’m thankful every hour that I’m not having to do this without them. I’m also hitting the caffeine pretty hard 😬
We are surviving pretty well, I think! He’s working through the loss of a parent , V is better now since I’m able to do more with her, and Val is slowly working towards sleeping at night. Painfully slow 🤣🥱
No sorry! I know you were and I was thinking of you also. Ever had a friend that you could have silent conversations with? 🤣😘 We got that beat!
I would have loved to have more...but 8 is probably double what I could imagine 😵 We are getting the names mixed up and only have 2 🤣🤷♀️
I love you too and want you to rest! And avoid things with sharp corners 😵🤗😘
Sorry to hear this! Prayers to you
Amore55 Know we are all here, willing to listen and support you in any way we can. Any chance your new neuro could see you any sooner? If you have insurance, perhaps a trip to the ER would help you get in. Keep in touch with us and let us know how you're doing.
Just seen your message today Amore55 I'm so sorry you are going through this. I hope things have been getting better for you. I hope that you new Neuro is a great one. Keep us updated when you can. Gentle hugs your way.
Jessie
I'm having same issues. Your not alone...
I am sad to hear that you are in a rough patch.Sometimes reading ahead is difficult yet having to stay in one place ive gone thru dresser drawers and sadly....tears of joy and sadness....One thing for sure we go "thru " it and cant just jump over it.May your day be blessed....hope your doc can help side effects of MS.You, the real you are still there.
Update us please