Very frightening thing just happened.

[Sunshine]

90 minutes ago, I developed horrific pain both legs between knees and ankles. It was as painful as a Charley horse, but it was different. It would not stretch out, it felt very deep in the muscle, the leg hurt both front back and sides.

It hurt so much I could barely breathe. I called my husbanI and he came home and took me to his office as I was afraid to be alone..I was walking stiff legged. It began to ease up after half hour. Now it feels weird, like reduced sensation and like it could happen again.

I called the neuro. Nurse said if it was an attack it wouldn't go away so fast. I dunno. First of all, I had that weird bladder stuff going on since last week that is not an infection afterall.

In any case she will talk to the doc and I should still do the IVIG.

I really was thinking, "This is it, this is the attack that will put me in a wheelchair." So hoping tomorrow finds me back to baseline.

The worst part was the pain, it was horrible.

[stillstANNding]

Oh, BBS, that's sounds horrible and scary. I hope it doesn't happen again. So glad your husband could come get you.

ANN

[Sunshine]

Doc called me just now. He said if it does it again, can try gabapentin . Said it sound like sensory symptoms, not spasticity.

Looks like there will be hurricane watches put up soon for our part of Florida. Timing is everything. Or as Gilda Radner said, "it's always something"

[Howie]

If it's not a sweat ball on the end of your nose, it's a hurricane in your front yard!

[Catdancer]

That sounds really painful. I'm so sorry. I've not experienced anything like that, but MS can be so variable.

[KaTEE2160]

Hope you feel better soon! Are you on any medications?


Loving light Katee

[Howie]

Welcome Katee.

[agate]

I can't offer any help on this except to say I hope it was a one-time-only episode.

KaTEE2160, WELCOME!

[Parsi]

Katee,

[Parsi]

BSS, your pain may not have been an exacerbation, BUT I'd definitely say you were ATTACKED!

[SuzE-Q]

Darn, just lost a loooong post to you on this.

But yes, I've had the exact same pain as you experienced, exactly the same area. Also surmised to be sensory, not muscle-related. Gabapentin did nothing for me.

Will try to rewrite tomorrow, hopefully yours disappeared, or gabapentn helped.

So sorry you're suffering with this - I agree, it's excruciating!

[Sunshine]

First, welcome Katie, and if you feel like it start a Hello thread about how you're doing, and anything else you want us to know!

I haven't started Gabentin and the pain is gone now, legs feel weird, but not in pain thankfully. Today is IVIG and doc said it could help too.

I will be trying to get DH to install the hurricane shutters and evacuate to west coast of Florida by tomorrow morning for Matthew.

[Lazarus]

Sorry you had a scare. Since IVIG is a blood product and not a chemically constructed med be careful not to jump to assumptions. I am glad it has gone for now.

Usually when I experience a new symptom and it goes away, it does eventually pop in again. For example, the esophageal spasms that started a few years ago have slowed down and I go months without them. Then they show up and then they go away again. I always say that the new symptom has now rolled itself into the whole ball of symptoms that make up my MS. I never know which one will unwind itself at a given time. Surprise surprise surprise. That's life with MS.

[SalpalSally]

Oh my, hope you can all avoid Matthew.

welcome to Braintalk Katie!

[SuzE-Q]

Hi BBS,

Mine began infrequently and wouldn't last long. Exact same, both legs, knees to ankles. It would occur on and off for days or months then disappear for years. Lasted for minutes to a couple hours at a time. This happened like that for around 20 years.

Unfortunately, now it wakes me from sleep almost every day and is there almost daily, for a couple years now. It just won't go away, although I have many hours each day where I'm just fine, the pain is gone. But it's almost always the thing that wakes me up now, and periodically, I have temporary bursts during the day,

I've tried everything: morphine, oxy, Tramadol, gabapentin, etc. Nothing worked. Tylenol3 mildly dulls it, but unfortunately the med has a short half life and doesn't last overnight so I'm woken by the pain, and I'm taking the med before I even have any pain before bed. I go to bed painfree, am woken in agony in the AM or earlier sometimes. Strange, if I have a nap during the day, it never shows up though.

So onto what has helped. Massage of the lower legs helps temporarily, I think it disrupts or distracts from the pain signals that are going awry. Soaking my lower legs in very warm water also provides temporary relief. ETA: forgot to mention that since heat helps, a hot water bottle or heating pad can provide temporary relief too.

Surprisingly, Fentanyl at the lowest dose (I think it's 12.5 mcg) completely eliminates the pain. I don't get any cognitive effects from it, I think maybe if you're in pain, you don't get any fun effects from it. My doc once prescribed too high a dose and I just felt very dopey and drugged. It terrified me and it too had no entertaining value. I've no idea how people take it for fun, I don't get any enjoyment from it at all, only pain relief.

But because I'm concerned about how addictive it can be, I only take Fentanyl when I'm desperate for relief, only a couple times a year at most. Again though, you wear a patch that lasts for 3 days, so you're overmedicating for pain that isn't constant. But it is such a relief to completely remove the pain that I'll use it when I just can't take it anymore. I'm still alert, clear-headed and can function just fine while using it, so long as it's the very lowest dose. It's such a relief to not feel the pain!

Outside of that, I sometimes take Tylenol3 just to dull it a bit if it seems to be lasting for a while. That, massage, and hot water, those are my temporary fixes.

Hopefully yours will be very infrequent and will disappear for months or years too. But if it happens, try asking DH to briskly massage your lower legs, or soak them in very warm Epsom salt water for a while.

And if you come up with solutions, please let me know too!

PS - hopefully you and Jeanie will make it through Matthew without any negative effects! Am thinking of you both!