I mentioned that this disease is progressing so rapidly over the past 6 months or so. I see my new neuro on 26th, cannot wait. I have to have my food cut into tiny, tiny pieces, then use my left arm to lift my right arm to get the food in my mouth. More misses than hits! I cannot urinate hardly, so am expecting catheters. Foot drop has worsened, so expect braces of some sort. The car is going fast downhill, but I am not driving it!
Just venting! Love, Kelly oh and getting “ hugs” all day on and off, so fun to breath like that.
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Amore55
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It makes my heart heavy to read your increase of burden. It makes my heart break 💔 knowing of all our suffering caused by this madness. Hey that gave me a thought... MS Madness & Sadness.
I am saddened that your MS is progressing. My heart also breaks to here such news. Yes it is frightening, unsettling .... Give your neurologist a call and let them know how you are feeling. Maybe your neurologist can make some suggestions until you see him/her. Please don’t think the worse. There are other things they can do for inability to void. I did pelvic floor PT, and increase drinking water/liquids. I didn’t have to rush into self- catheterizing or have one placed in permanently. They do have medications, my inability to urinate was due to muscle spasms. Make sure you don’t have a urinary infection, which can worsen symptoms. I sometimes can even tell I have a urinary infection. Occupational therapy works for hands/arms/hands. And there is medication and new devices for foot drop.
And PT can help. I apologize if I have maybe to much. But I don’t want you to lose hope.
You are doing your best under the circumstances. With the ways you are trying to adapt. Praying for you
I am glad that you are being honest with us and you feel comfortable sharing your situation and symptoms with us. Like the rest of us, my heart aches and hurts for you and for all of us. I wish that we all lived nearer each other so that we could give physical support. Know that we are here for you Kelly, a big hug that won’t hurt, you are in my prayers, and TonyiaR7 gave you some great advice. Blessings Jimeka 🤗 💐 🍫 🤗
Jimeka, I feel it is important that I say I know there are so many suffering who are MUCH worse than I am. But guess I hoped that somehow I would never reach this point and basicallly watch my body fall apart before my eyes. Thank you for the gentle hug. Kelly
It’s hard to find words to say...breaks our hearts when one of our brothers or sisters afflicted are suffering so...sincere prayers...don’t give up trying to fight back...vhug friend! 🕊🙏🏻
Oh my. I’m so sorry for you but I understand. I too am awaiting a neurologist appointment And it is scary how fast this can progress. I am four months of numbness, weakness all over. One mri done by regular doctor, who said ms and referred me to a neurologist. No relief in sight so far, trying to hope for the best with the neurologist. Using a walker, trouble doing everything because my hands are numb also. I did inquire yesterday with my doctor about starting physical therapy and he did write an order for that. Again, I have to wait a month for that to begin along with the neurologist appointment. My prayers are with you.
My heart is with you. I'm so glad you have someone who cares for you by your side. I hope the neuro is able to stabilize your symptoms, allowing you to go forward into your new life in Kansas.
Dearest goatgal, thank you for your message. I miss our long notes to each other, but do no type very well. Please stay in touch and tell me how you are doing. Love, Kelly xxx
So sorry you're heading downhill. Been there myself many times years ago. But you need to keep telling yourself, the road will start back up, hopefully sooner than later. Till then, take what you can get from your Neuro. Remember though, it will get better. Positive thinking is the best medicine.
It will, as long as you never give up. Back in the days of 80+ hour weeks, year after year doing some incredible work, under super stressful conditions, I would look at the picture of the frog in a big bird's beak, with the frog's hands around the bird's neck, photo shopped into the Chicago skyscrapers which I pinned onto the bulletin board next to my office desk, the saying: "NEVER GIVE UP". Never did, even then it always got better. Like the time I was hanging 200+ feet by a chair on a rope inside a collapsed chimney of a downtown highrise, building without heat as a result, we fixed it! Same on this M.S. horror ride we all go through! But you can't stop trying, or believing!
Hi Amore55, All of the above comments are things I would say too. Great thoughts and encouragement. I too know how you feel, but keep persevering. You are stronger than this disease. I truly believe that if God takes you to it, He will take you through if. You are in my thoughts and prayers that you are never alone in your struggle . Know you are loved and will make it through. 🙏🙏🙏🙏❤️😇😇😇
It might be good to rule out a UTI now before you see the doc. If you have one, they can start treating it. If you don’t, they can start treating YOU. Good luck!!
Gentle love-filled hugs to you, Kelly. It's hard to add anything to what these wonderful folks have already said. Just know how many of us are with you in spirit, how many are praying, and that all of us want to support you however we can.
Decided to break out my great veggie steamer and stick to those, blended for awhile, since having trouble swallowing. Do not know why I did not think of it sooner. Also fruit smoothies. Kelly
wow it is really rearing it's head for you ...hope you get lots of help from the doctor to stop this madness...good luck and may new meds help you ...love and much happiness is on the way ...
Amore55 I am so sorry you are feeling so poorly. The advice others have given seems good to me, I have nothing of value to add except my caring. Take care of yourself and let us know how you are doing.
My dearest, if I could reach out in cyberspace pray, hug you with the warmth of caring arms and say; "your strength and journey will help one of us." Please continue to be strong, hang in there my sister. Praying always, keep me updated.
Have you been to the emergency room to get Solu-Medrol IV infusions? You need to get that done right away if you haven’t this will help slow down the progression.
I respect your openness and honesty. During my last relapse 8 or so years ago, I was in your position and condition. Eating and drinking brought on pneumonia due to aspiration. Downstairs stuff mostly worked but PT finally brought my "junk" under control. Speaking and remembering words came back slowly, cognitive issues went away slowly. You will hopefully find the best treatment and start to recover. I no longer call MS the enemy, I call it my challenge, it gives me just a bit more mental strength to fight it!
My name is Chris and I'm new to the community. I was just diagnosed 4 months ago. I want to thank you for sharing your pain because pain shared is pain lessened. You have alot of love in this community and I am glad to be apart of it. I will keep you in my prayers.
Hi Chris! Thank you for your kind, sweet words! I am so sorry you have been diagnosed with MS, but so glad you have found our “family”. Here you are safe to ask questions, share or just vent. Please stay in touch and welcome! Love, Kelly 😊
Ask your doc about Flomax and Dandelion Root (supplement) to help with urinating. NOTE TO ALL - NEVER TAKE SUPPLEMENTS WITHOUT TALKING TO YOUR DOC. Have you tried occupational therapy and/or weighted utensils to help with eating? And vent all you like!
I am so, so sorry that you are progressing so rapidly. In Dec. I was in the same situation until I started Mavenclad in January. It is a game changer, stopped my progression in its tracks and also reduced previous symptoms. You will be in my prayers 😌🧡🙏🏾
thanks for sharing your frustrations. I truly don't like the constant loss of abilities. my thoughts and prayers are with you as you figure out this new way of being
so many great ideas stay positive easier said than done but I believe our state of mind does impact this disease. Prayers and positive vibes coming your way, god bless
My whole life is completely different now. I’m so much better than I was. I can do things that I thought I would never be able to do. I go hiking, play golf, tennis, so many things that I never really dreamed of doing when I was so sick. I stopped taking my ms medication and changed my diet drastically. Thank you for asking after all that post is 4 years old. I hope you are doing well.
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The hardest day of my life so far
The thing about MS is.....
RELIEF FOR THE KNEE PAIN--AT LAST!!! BUT WILL IT MATTER?
This is it
