Body Shutdown

[Diva1976]

I've had two occasions this month where my body has been none responsive! The first one was me climbing some stairs to get to the bathroom at my friend's apartment on 4/3. As I went up step by step I started to feel weird. As I walk through the apartment with a cane, I notice my balance was more off than normal! I still tried to proceed with what was next. Therefore, after using the bathroom I attempted to go back down the stairs because I had a chiropractic appointment. As I approach the top of the stairs it looked impossible for me to make it. I eventually attempted but realized my legs weren't moving! My left leg is weaker than my right and I have foot drop on the left. I'm normally able to move the right and drag the left. But in this case, the right wasn't responding either. Therefore, I held on to the banister and asked my friend to move each leg one by one accordingly down each step. Remind you, in my mind, I'm pretty sure I ain't going to be able to walk out the door to my vehicle but I'm still hoping for a miracle at this time. Because I don't know what my body is doing! Sure thing, I'm barely moving but trying! At this point, forget the appointment I just need to get home! A neighbor of hers sees my struggle and tries to help. He can see my body ain't moving. He asks where is my vehicle. I point and he states fxxx you ain't making it there! We all laughed! He said give me your keys I'm going to drive your vehicle to you. He does that and picked me up to put me in the driver's seat. I sat for a few seconds but knew I needed to get off this complex grass. I had to maneuver my right leg between brake and gas. I said if my body doesn't get it together after I sit here for about 25 minutes then I have to call family to take me home. My friend doesn't know how to drive. Miraculously legs regain enough strength for me to take my 45-minute drive home without me assisting the right leg. What type of experience was that? It's mind-boggling! I believe MS is trying to make it where I'm wheelchair/bedridden-bound! Therefore, I must keep fighting.

My second experience was on 4/18 after water therapy. My body was moving okay in the water. After the water session, my body locked up. I'm having a hard time walking back to my room to shower and get dressed. I finally get dressed with a help of a friend but struggled to get out of the building to my vehicle. I eventually made it and sat there thinking what's really going on with my body? Why am I having these episodes? Thank god I regain strength after 25 minutes! But what's going on? I tried to get an appointment after the first incident with my neurologist but nothing was available until 6/15. I said I need a call at least! Still nothing! So I decided to talk through the patient portal but that wasn't my doctor talking back. Didn't answer my questions and just noted to stay on Ocrevus and do PT. After 4/18 I called back to try to get an appointment and lucked up with an appointment on 4/28. I just wanted to get insight from my doctor in person. He stated that it could be that my MS is progressing because I'm at primary progressive stage. Or something with my back can be contributing to what I'm going through. He's having me do MRI on my back. He wanted to do a steroid infusion. No space was available until 2 hours later which would've cut into the time I needed to pick my son up from school. Anyhow, a prescription was written for steroids at home for a few days.

I realize we're all different with our MS, but has anyone experienced anything similar? What I know now is to sit for a few minutes to regain strength I call it!

[bxrmom]

Maybe it is fatigue from going up the steps to use the bathroom and doing the water therapy? Even though water is supposed to make it easier on the body? Something has to be going on somewhere. Keep us updated when you can.

[Diva1976 in reply to bxrmom]

I most definitely will!

[NorasMom]

I only get like this when I'm having a serious exacerbation. If the steroids don't help, go to the ER and see if they can do something for you.

[mrsmike9 in reply to NorasMom]

I was wondering about the ER as well. This sounds pretty scary!

[Diva1976 in reply to mrsmike9]

It was and the thought of it still has me shook but I’m learning to rest more instead of trying to steady move when the body clearly isn’t allowing me to.

[Diva1976 in reply to NorasMom]

The steroids did seem to stabilize things. I’m just learning to rest more even though it may seem as though I did nothing.

[Fancy59 CommunityAmbassador]

Yes indeed Diva1976, I've experienced something similar and it is MS related as far as I know. When you overdo your body with too much work, exercise, play, or stress the body seems to basically shut down or portions of it does. It hit my legs much like it hit yours. After I sat down for a mere 10 minutes it corrected itself and I was able to use my legs again. Becareful when you rest with your body's part that's not functioning because the 2nd time you get up it stop functioning quicker so don't overdo it. Take the rest of the day off and keep your feet up and try to let your body relax. These episodes are so scary because no one ever warns you about them. I was out riding horses with my family and we had ridden for about an hour and a 1/2 and stopped and had lunch and relaxed for 45 minutes. .Everything was fine. After we packed up our food we got back on and rode about one hour back to camp. When I got off my Horse my legs simply folded up under me.If I hadn't been hanging on to the saddle I would have fallen to the ground but I managed to pull myself up.I tried once again to stand on my legs and again they folded up. I took the horse and hanging on to the side of his neck I managed to walk toward the trailer to tie him up. It was at this point my husband looked over and said oh my God your horse stepped on you and your ankle and crushed it. That was because I was walking with my ankles twisted completely over the side and I was using my horse to hold me up by hanging on to his neck and mane. I told my husband no, my horse hadn't stepped on me but at the present momenth he was holding me up because my legs didn't seem to want to work. God. It was so scary. I thought it was never going to walk again.

I called the MS nurse hotline and they had not a clue what was going on either. Gradually over time. I figured it out that if I did too much exercise or fun my muscles couldn't take it. I learned to figure out warning signs and stop before these episodes became so chronic that I collapsed. Look back and think about your warning signs and remember them. Because unfortunately these episodes probably will not go away. Message me back if you have more questions. Please take care and try not to stress your body and overdo it. Remember together we are stronger. Fancy59.

[Diva1976 in reply to Fancy59]

Thank you, I most definitely will. I’m glad you were okay after that experience and have learned what to do and not to do. Last Tuesday after water therapy I sat instead of forcing myself to move and had my friend push me in wheelchair. So things went much better.

[Humbrd]

So sorry to hear about these episodes. I have never had that happen to the degree that you have. Only to where I'll feel very overtired and my legs aren't working right and I'll need to lay down and rest but not to what you have experienced. I hope this never happens to you again.

[Diva1976 in reply to Humbrd]

I hope not but I’m afraid it may. Something is going on and I’m trying to figure it out! And me too have experience what you said which is our normal but these two episodes is something totally different!

[Sandydemop]

hi Diva, i have had situations where my mind said i could do something or do more of something but my body says no. My endurance is much less than it used to be and much less than i would like but i have to do as much as i can every day. and take my endurance level into account.

[Cwright170994]

I don't have PPMS, but I have come across this 🫂 I've had to do, what I call, "booty scooty" down the stairs at my home! My partner would sit in front of me and booty scooty down with me to act as a block in case I slipped! I've now got a stannah stairlift installed, and though I no longer often have to use it, it's there for when I do need it. I've found steroids work wonders for me, and back in April 2021 I had a really bad relapse. The only way I knew how was me having 3 generalised seizures one night, having to be ambulanced to hospital, and I was given steroid infusions. I could walk myself again! I also got a call from my MS nurse, saying that my RRMS is aggressive, so come off the copaxone because my neurologist had enough evidence to get me on ocrevus. We tried tysabri, but I was found to be JCV positive after 1 dose, so back on copaxone I went 😞 but, ocrevus and steroids are what's allowed me to be somewhat back to normal! I don't need my partner to booty scooty down the stairs with me, I rarely use the stairlift, and sometimes I know I am able to walk longer distances using my manual as a "rollator," maybe even just using my stick!

[Diva1976 in reply to Cwright170994]

That’s great! Ocrevus has kept me stable on paper but my body be doing something different. One thing I have to realize is PT/OT for life. Continue to keep moving at your pace.

[ahrogers]

I have had similar when my body temperature has gone up, either from exercise or infection. I hope the steroids help!

[Panda52]

blessings to you 🙏

[Robsmom]

I've had several incidents like this and it was because my nerves were overheatd. I feel fine temperature wise but my nerves are overheated. The first time I went shopping after an exercise class, I felt fine but my nerves were hot. As I started shopping my body wasn't responding and I had to call someone to take me home. I was in bed for a day with sever fatigue. My PT and doctor said my nervers hadn't cooled after the exercise class and that was how my body reacted. Now I know even in December I have to wear cooling equipment when I exert energy.

[Diva1976 in reply to Robsmom]

Never thought of the nerves being overheated. That’s another way of looking at it. This makes a lot of sense.

[Robsmom in reply to Diva1976]

Yes, I have found when I feel temperatures are comfortable my nerves are a little too warm, so I have to be a little cool for my nerves to be good.

[whwiechm]

My very first edxperience with MS happened in 1974. If I walked about 500 feet, one leg would completely go numb. I couldn't tell where the leg was without looking aT IT, AND i COULD NOT FEEL THE GROUND i WAS STANDING ON WITH THAT LEG. iT WENT AWAY AFTER ABOUT 3 MONTHS AND HAS NEVER HAPPENED AGAIN. dARN CAPSLOCK! MS can really do some strange things to us.

[Diva1976]

Wow what an experience you had! I’m glad it went away and hasn’t returned! And you’re right MS does some strange things!