It is frightening...the progression - My MSAA Community

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It is frightening...the progression

Amore55 profile image
53 Replies

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 profile image
Amore55
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53 Replies
Allen5280 profile image
Allen5280

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.

Amore55 profile image
Amore55 in reply to Allen5280

Thank you Allen

TonyiaR7 profile image
TonyiaR7

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

Amore55 profile image
Amore55 in reply to TonyiaR7

Thank you

Timeflies5 profile image
Timeflies5 in reply to TonyiaR7

Well said, TonyiaR7! God bless you! 🕊

Amore55 profile image
Amore55 in reply to TonyiaR7

Tonyia, please do NOT apologize! You have given me such good advice! I am very grateful for your excellent input. Love, Kelly

Kenu profile image
Kenu

Prayers are with you 🙏👍😉🐾🐾 Ken

Amore55 profile image
Amore55 in reply to Kenu

Thank you

rjoneslaw profile image
rjoneslaw

I hope things start to improve for you.

Amore55 profile image
Amore55 in reply to rjoneslaw

Thank you. Kelly 🙃

jimeka profile image
jimeka

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 🤗 💐 🍫 🤗

Amore55 profile image
Amore55 in reply to 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

Timeflies5 profile image
Timeflies5

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! 🕊🙏🏻

Amore55 profile image
Amore55 in reply to Timeflies5

Thank you Timeflies5

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.

Amore55 profile image
Amore55 in reply to

Best of luck and hugs, Kelly

LadyLeo profile image
LadyLeo

💪🏽🙏🏽🧡

erash profile image
erash

Sending 🥰🤗

Amore55 profile image
Amore55 in reply to erash

Thanks, Liz! Kelly xx

goatgal profile image
goatgal

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.

Amore55 profile image
Amore55 in reply to goatgal

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

janetb1968 profile image
janetb1968

Oh bless u honey ❤️ That’s crap news and for u xxxxxx lots of hugs for u 🥰🥰🥰🥰😘😘😘😘🥰🥰🥰🥰😘😘😘😘🥰🥰

Amore55 profile image
Amore55

janetb1968 thank you for all the hugs and kisses! Back at you! Love, Kelly xxxooo

MarkUpnorth profile image
MarkUpnorth

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.

Amore55 profile image
Amore55 in reply to MarkUpnorth

MarkUpnorth thank you. I keep believing. This downhill journey has to go up. I always enjoy your comments! Love, Kelly

MarkUpnorth profile image
MarkUpnorth in reply to Amore55

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!

DIsneyQueen profile image
DIsneyQueen

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. 🙏🙏🙏🙏❤️😇😇😇

Amore55 profile image
Amore55 in reply to DIsneyQueen

DisneyQueen thank you. Your kind words help. Kellyxxx

Juleigh21 profile image
Juleigh21

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!!

Amore55 profile image
Amore55 in reply to Juleigh21

Thank you. I appreciate your advice so much! Kelly xxx

greaterexp profile image
greaterexp

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.

Amore55 profile image
Amore55 in reply to greaterexp

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

greaterexp profile image
greaterexp in reply to Amore55

Brilliant idea. We are always have to adapt and adjust, aren't we? I'm glad you shared what you're going through.

carolek572 profile image
carolek572CommunityAmbassador

My heart goes out to you Amore55 You can vent away, always. Enjoy that car ride, with the one that you love :-D

Amore55 profile image
Amore55 in reply to carolek572

carole572 thank you for your advice. Appreciate it! Love, Kelly xx

Amore55 profile image
Amore55

greaterexp thank you for the hugs. Can use all. Love you, Kelly xxx

Brindisi1 profile image
Brindisi1

Prayers for reversal and upward journey

mrsmike9 profile image
mrsmike9

How terrible. No chance of moving up the appointment?

twooldcrows profile image
twooldcrows

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 ...

bavery207 profile image
bavery207

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.

stepsforNeeC profile image
stepsforNeeC

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.

Blessings-

NeeC

stevec64 profile image
stevec64

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.

jorrell profile image
jorrell

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!

Christina49 profile image
Christina49

Hello Amore55,

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.

Amore55 profile image
Amore55 in reply to Christina49

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 😊

throughtheyears profile image
throughtheyears

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!

Amore55 profile image
Amore55

Thank you so much, good ideas! Love, Kelly

LAS3 profile image
LAS3 in reply to Amore55

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 😌🧡🙏🏾

eharoot profile image
eharoot

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

RoseySawyer profile image
RoseySawyer

Have your doctor's talked about a plasmapheresis? ♥️🤗🙏♥️🌹

NanaCC profile image
NanaCC

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

309Ygi profile image
309Ygi

Are so you doing better?

Amore55 profile image
Amore55 in reply to 309Ygi

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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