I just need a “there, there” and a few pats on the shoulder.
At the start of the weekend, my left foot felt like I’d stepped on a rock. Most of you have been there, I’m sure. By Sunday, my left leg was falling asleep repeatedly. I just assumed it was the way I was sitting and made a point to move around a lot and massage the leg.
On Monday, the left leg was numb and I was stumbling and tripping around the house. I did my best to just rest a lot, but by mid-morning today the numbness had spread to both legs, both arms, and my face. The arms aren’t interfering with anything yet, the face just makes me want to slap at it, but the legs are really bothering me. I was very close to dragging my rollator out of the closet, but I’m not quite to that point yet.
Anyway, I sent a note off to my neuro, and he’s managed to fit me in at 8:30 on Friday. He’s concerned enough that he’s urged me to go to the ER if things worsen.
You’d think after all these years I’d be used to whatever MS throws at me, but I’ve never had an attack hit me this quickly for no reason. Always before, it’s been because I was intentionally active and just pushed myself too hard. I have to admit that I’m scared.
Hi sweetheart.
Oh love, you are entitled to be scared. You are a trooper who supports us all here. So now we are giving you that ‘there, there’ that you ask for and many more besides.
I am glad you are seeing your neuro tomorrow…hope he puts your mind at rest.
Oh blimey, you don’t need that. I know how scary it can be when random stuff happens, it kicks off all my anxieties and I completely forget my “positive outlook”
Fingers (and toes) crossed that this new stuff goes away as quickly as it arrived.
Thinking of you.
Mick
Sounds like a relapse alright. Actually I have had a relapse start like that (a couple tbh). The first was actually on a day when I had a routine MRI scheduled. Which was quite lucky. It meant the inflammation in my brain showed up super bright. I’d been aware that the relapse had begun because I without warning had my legs give way (in retrospect in was probably just one leg which completely unbalanced me). I fell very hard on my driveway and bashed my face quite badly. The symptoms increased over the next few days.
But, as I was aware it was new symptoms that had struck quickly, the following morning I took a urine sample to my GP (to check I was clear of infection). Then I took a 5 day course of steroids. We call them Prednisolone, but in the US they’re called Prednisone. They worked like a dream, I don’t think I’ve ever had such a speedy response to steroids.
Maybe you could discuss steroids with your neuro? (Get a urine sample checked first - very important as steroids on top of an infection would make the infection many times worse!)
Obviously, some people hate steroids, or have had especially bad responses to them.
Meanwhile, treat yourself kindly, have yourself a good rest today and an early night. Try not to focus on the relapse too much (I know, easy said, hard to do!) But follow your neurologists advice. If it gets worse, get yourself to the ER. I did once have a terrible relapse where my entire body below the waist stopped working. I was in hospital for 3 weeks then a rehab unit for 2 months. Even with IV steroids walking was never possible without an orthotic and a walker.
If your legs get worse, then swallow pride, get the rollator out. Better than falling!! (Having fallen once too often and even broken my femur because of a fall, I know what I’m talking about!!)
Hi ,
I’m so sorry you’re feeling crappy right now. It doesn’t matter how long you’ve had MS , you’ll still have times where you’re completely scared and stressed out with weird symptoms that you might be experiencing.
If it’s any comfort to you I frequently get the feeling that I’m walking on a small stone , this happens on my right foot mainly between my 4th and 5th toe , just in the area before the heel area, so 3/4 of the way down. It’s so annoying and horrible to walk on so I can completely relate with you on this one.
Hope your neuro is able to help you with these symptoms, in the meantime be kind to yourself and try to rest as much as you can.
I’ll try to keep this brief, because I’m tired. i do appreciate all the thoughts. It’s been a very long, very wild, whirlwind day.
I really thought the neuro would just hand me some steroid pills and schedule an MRI in a couple weeks. Instead, he said he wanted to do everything right now, and he really meant RIGHT NOW.
They parked us (Mum was with me) in a private room while the entire staff was running around like mad trying to find someone to do the bloodwork and an MRI of my brain, neck, and spine, both with and without contrast. The only place was the nearby hospital that I don’t use, so we raced there, couldn’t find a parking spot and walked a block using 2 canes, dealt with mixed-up paperwork, jumped all the lines, and had the bloodwork done.
I sent Mum away at that point, because she was having flashbacks to my stepfather’s last days, and they erroneously told me it would take several more hours. instead, they took me for the MRI right away. I called my son to take me back to the neuro’s for the first of five steroid infusions. I have to go back every day next week – 4 more infusions and 1 visit with the neuro.
I’ve lost track, but I think I have 14 holes in my arms from 3 procedures today. My veins kept collapsing, and 8 of the attempts were just for the dye.
The bottom line is that he thinks this is an acute attack that was caught early and might be treatable, but he wants me to start thinking about DMT’s and is also sending me to an Ear, Nose, and Throat specialist for a couple other issues that they found.
I’m disappointed that I didn’t get high from the steroids. I’m just really tired right now.
I should also add that there’s only one new small white spot on my brain that the neuro thinks might be a lesion that hasn’t fully formed or isn’t old enough to show up as a lesion. The spinal column is still clear, in spite of the fact that most of my symptoms have always been related to spinal lesions in other people.
I’m so glad your neuro took the relapse so seriously. Starting steroids this fast is exactly what’s needed. And IV (for me anyway) has always worked well.
Better get prepared for some sleepless nights and teeth grinding. Plus horrible metallic taste in your mouth!! (Try strong mints for that!)
Hopefully the relapse will respond fast. And if you can, follow neuros advice and start a DMD (I know it’s a matter of insurance paying for expensive drugs so that’ll be ok’!)
Thank you, Bouds! Yes, Mum’s okay. It was all complicated by the fact that she has some hearing issues at the best of times, and she couldn’t understand what people were saying from behind their masks, so she was flying blind all morning and getting stressed from that alone. Then being rushed around new places and sent to a cardiac unit for the MRI had her in a panic.
Add in the fact that she worries too much about me anyway. She felt that she let me down. I felt guilty. We wound up going to her house at the end of the day and had a pizza party while sitting on her front porch in the unseasonably-warm evening. I never would have had her drive me if I’d realized it was going to turn so crazy, but we both slept well and are fine today.
That’s good. When my mum was with us she used to look at me and say ‘You alright?’ I’d say yeh and she would use her xray vision and reply ‘You’re not, are you?’ Cant fib to mums!
Boudsx
The steroids have worked their magic, although today I have a bit of the shakes.
Had a follow-up visit with the neuro yesterday, and he wants me to think about trying Copaxone in a couple months. I told him I’d consider it, but I’m really not. For one, the cost won’t be affordable, which is another subject entirely.
I’m just happy that I shouldn’t be sick for Christmas!
I’m really pleased the steroids have done their job. Being I’ll for the holidays is just not nice.
I’m unsurprised that the cost of Copaxone puts it out of reach unless you have insurance who’ll pick up the bill. But I’ve just had a look at the cost of disease modifying drugs in the US and am frankly horrified. Especially by the cost of old less effective drugs like Copaxone. Tysabri (more effective and newer) costs less. But then you’d probably have to pay for the administration of Tysabri - generally in hospital, requiring infusions, nurses, expensive regular blood tests …
I’m astonished that anyone in the US can afford to take DMDs apart from the expensively insured or the rich.
We (sometimes, although it’s a bit unfashionable nowadays) complain about our NHS in the UK. It can take a long time to get appointments, diagnosis can take forever, red tape and form filling is rife; but at least we have free access to disease modifying drugs.
I’m so sorry you don’t NM. Taking a good drug to prevent and reduce the severity of relapses should be a right, not a privilege reserved for the wealthier members of a society.
But still happy you feel better. The benefit of the steroids will continue for weeks to come, so while you still feel jittery, that will soon wear off and you’ll feel better and better over time.
I feel bad for the people who need actual life-sustaining drugs. Going bankrupt over medical bills is a very real thing here. There’s a local little boy with a heart transplant whose family holds spaghetti dinner fundraisers to help cover the costs.
For the last couple years, the gov’t has covered all my medical expenses, but that’s coming to an end in 3 months. WITH my mandatory medical insurance, the DMT’s all cost more than I earn.
I’m just really tired right now.
that’ll be ok’!)