I'm stumped....advice would be helpful

[rdmc]

After all these years dealing with MS, there's not many times I don't have a plan what to do when a symptom crops up, but right now, I'm stumped, and not sure what to do next.

Quick recap: About 6 weeks ago I fell, hard. One of those standing one moment, bouncing as I hit the floor the next...but I landed full on my right side leg to shoulder. Surprisedly no residual effect felt good the next day.

Fast forward a week, and I start to have hip pain on the opposite side (my left side, my good hip/leg as far as the MS.) I let it ride for a few days, then went to see the neuro. He ordered a .hip x-ray and PT. Said see how that goes and if it doesn't improve we'll do more imaging. Hip x-ray clean, so on to PT.

My therapist is a great guy, and thought it might be bursitis, so we treated the left hip pain for 2 weeks, and I just progressively got worse. Pain now moving into thigh and lower back, with more spasm. He says, no more PT until further imaging done of hip and lumbar area. That was last Thursday.

I put a call into my neuro last Friday asking for more imaging, per PT and what the neuro had said. Heard nothing, called yesterday, and was supposed to hear back, but then this morning finally did.

So by this time, my left leg and hip has completely locked up. Absolutely no ROM in hip or knee, foot comes about 1/2 inch off the ground. While lying flat I cannot move the leg, not one inch in any direction. Hubby tried to help me stretch, and nothing moves or bends. I explain this to the neuro's nurse, and the scheduler calls me back to schedule the MRI and told me it would be the 22nd. I explain to her my situation as far as having to stay in bed with very little mobility and lots of pain and spasm...she relents, okay the 20th...still 8 days away. I've got a call back into the nurse at the neuros to try to explain the situation again, not sure what good that 'll do. They did not return it today.

I called my physiatrist just to see if the immobility of the leg might be spasticity related, or pump related, but since everything else is working fine, she believes it's probably related to the fall. My GP is booked up. So I'm stuck with the neuro.

I have meds on hand, and I've tried extra oral baclofen, pain meds which take the edge off the pain, but it's not really pain relief I'm looking for, I want spasm relief. I have benzo's and tried taking an extra one of those and still no relief. It's crazy the way I'm walking, if you can even call it that, more shuffling...and I don't know how to get someone to take the situation seriously, although it's pretty severe when observed in person.

I've never had much luck with MS symptoms and ERs. Maybe they could give me some muscle relaxer to break the spasm, I don't know. Seems when an ER doc sees MS they blame the symptom on MS and don't do much investigating As I said, I'm seldom stumped by this disease anymore, but this time, I truly don't know what to do. Any suggestions greatly appreciated

[bree2013]

rdmc,

The only advice I have is go to the ER if it gets worse or you can't take it any more (even with your past bad experiences).
they might be able to do something.

Or call your GP office every day in case there's a cancellation and they can squeeze your in.

Sorry you're dealing with this -- good thoughts going out to you

Bree

[Tia1]

I don't have any useful advice, just wanted you to know that I am praying for you. I get what you are saying about the er, but they would probably do the mri there. (hugs)

Let us know what you decide.

[Kimba22]

Hi rdmc,

Sorry to hear about your fall and now the pain, spasms, and leg and hip locking up.

My advice would be to go to the ER. I would hope there you'd get the imaging done ASAP. Hopefully you'll find out what's wrong then get set up with a treatment plan right away that will help you move forward. The faster it's addressed, the better your prognosis. Waiting those 8 extra days might end up costing you in the long run, depending on what's wrong. Plus, therapists say each day of bedrest really sets your strength back 3 days. So you'd be set back another 24 days by waiting until the 22nd. Then you'll be waiting to hear the results, then waiting to set up a treatment plan ... You don't need to add additional weakness from the waiting game on top your troubles if you can help it!

ER's not the most fun way to spend your day, but IMO, getting some answers ASAP would be worth it. (Ended up there myself the other night.)

Hope you find out what's wrong and get better soon! Best of luck and let us know how you are doing!

[rdmc]

Thanks to all for the replies.

I guess I'm going to have to go the ER route. I'll put a call in this morning to my neuro and GP letting them know that I'm heading to ER. Then try to get caught up on work and head over there mid afternoon (usually less busy then.) The car ride should be "fun"...hadn't thought about that until now.

As far as imaging at the ER that will be interesting. In years past, I've never had an ER visit that resulted in anything more than plain x-rays (and the occasional cat scan) never had an MRI ordered in the ER, although an ER visit has hastened appt. for an MRI. But who knows, maybe an x-ray will show something now that it didn't three weeks ago.

Kimba, sorry about your ER visit. Did everything get resolved? I've spent my fair share of time in ERs but most times, in recent years, it has been for the crazy MS BP/cardiac issues , or pump problems. Good point though about the days "down" because at this point I'm probably 90 percent in the bed, propped up on my wedge system.

We do have a great ER now at one of the hospitals. Private rooms for each patient. Flat screen TV's, and a couch for anyone you might bring with you. (I'm more of a "help me get checked into the ER...then go back to work and I'll call you" type of person) because so much waiting involved and I'd rather spend the time resting than talking..

On a lighter note, I know I can't post links to youtube videos on these forums, but go to youtube and search Brian Regan Emergency Room. Every time I watch it, it makes me laugh...he's a comedian and he describes his
ER visit. It's hysterical.

Thanks again for the advice.

[laurasari]

Rdmc
How did it go at the ER. I have never known them to do MR.is in the ER only like someone else said. CT scans and X-RAYS .
good luck hope they were able to help. Unfortunately I don't find ER doctors particularly helpful with MS issues. Unless you are lucky and they call in a Neuro

[rdmc]

Rdmc
How did it go at the ER. I have never known them to do MR.is in the ER only like someone else said. CT scans and X-RAYS .
good luck hope they were able to help. Unfortunately I don't find ER doctors particularly helpful with MS issues. Unless you are lucky and they call in a Neuro

Well, here's my update.

I did go to the ER yesterday. I waited till 3 in the afternoon because I work from home and wanted to get the majority of my work for the day out of the way.

Just had my dad drop me off because no use for other folks to waste their time waiting. Took me about an hour to make it back to the "cubby"...I had changed my plans at the last moment and decided to use the larger hospital because I remember the pump doctors telling me always use that hospital if there could be any pump issues. Plus it's fairly close to our home, so my husband can check in every couple of hours, then head back home.

I had called my neuro and my GP in the AM yesterday and let them both know I was planning on making a trip to the ER. My neuro said it was a good idea because the imaging could be done sooner.

The ER doc examined my stiff leg, and said it sure felt like spasticity to her...which is what I'd be saying all along, due to it's inability to move or bend at joints and no ROM. But I hadn't remember spasticity hurting as much as this hurt...maybe it's like childbirth...after it's over you forget the pain

They put a call into my neuro and he ordered the MRI of pelvis and lumbar spine. So I spent a couple hours in the tube, it was probably about 7:30 by the time that came around. I have never had a lumbar/pelvic MRI, and it was a bit uncomfortable, they taped my feet together, and down to the "slab" so as to maintain a steady pelvis. That was a new experience, and so "comfortable" for someone with severe spasticity issues.

MRI came back clean as a whistle. No back problems, disc problems, no arthritis, no hip or pelvis issues. So ER dismissed me at around 10:30 PM with the diagnosis of MS spasticity. So it really was just the MS acting up. It's been going on for almost a month, and the things I was doing to help were just aggravating the spasticity, so that's why it kept escalating, I'd imagine.

This morning called my neuro per ER instructions, then called my pump doc (nobody at the hospital to check the pump to make sure it restarted, so I was supposed to head to the pump doc anyway.) Pump doc examined the leg and again said spasticity, so we upped the dose as high as they're comfortable with (which is a 10 percent increase)....I may be looking like Ray Bolger tomorrow, but within 1/2 an hour, I started feeling relief from the spasticity and the movement is returning. I'm supposed to
take it easy for the next few days. Prescription to lay around with my feet up in order to give muscles a chance to calm down...that's my kind of Rx.

So I'm on the mend...if we're too high on the dosage, I'll just go back in and have dosage turned down, but for now, I'm a happy camper.

Thanks for asking.

[MSLazarus]

Hello

I use 5 mg Valium for spasm relief. It is a muscle relaxer and works for me when muscle relaxers don't.
One emergency room visit years ago taught me this. A shot of liquid Valium unclench back muscles that had been locked up for a week.

[bluegiraffe]

Hi rdmc,
Just seeing your post now.
Sorry to hear all you are going through and glad to hear you are on the mend.

I had similar issue a few years ago and went though many tests and doc visits as I was sure (PT too) that something was injured beyond MS. All results came back fine - nothing wrong. Pain, spasms and spasticity were bad.

Walking became worse and harder, I stopped exercise since it seemed due to an injury prior to test results. My neurosurgeon sent me to a physiatrist at the time who examined me and said it was spasticity and wanted to do Botox at that time.

I'm not certain if my leg contractures were the result of this but it is good to keep moving best you and your doctor feel you can

Take care and keep us posted.

[bree2013]

rdmc - Glad to hear the higher dose has helped. Hope your ROM returns to your normal.

Bree

[rdmc]

Hi MSLazarus, I, too, have found benzodiazepenes effective for stubborn spasms and spasticity. I have an as needed prescription for them, but it didn't seem to help this time. I'm sure a shot of a benzo would have calmed things down (Once when I was in the hospital and having clonus so bad, they gave me a shot of Valium or Ativan...can't remember, but it eased the spasms almost immediately.0 We didn't get that far with this, probably because they knew I had the pump and once it was determined to be spasticity, they knew I could get it upped. They did give me a different kind of oral muscle relaxer, I can't remember it's name, but something I've never had before, it seemed to take the edge off.

BG, that's interesting that you had similar situation where everyone, including you, were sure it was an injury. That's what was going on with me. I was convinced it was an injury as well, as were the docs (neuro and physiatrist, and the PT.) The MRI proved us all wrong. Never had spasticity hit so hard in only one leg and leave the other near normal. I think I've mentioned that when I had the pump implanted I regained most of the movement in my right foot , but I never regained normal positioning of my foot from the ankle to the toe...it turns inward about 45% (doesn't hurt) just looks a little wonky. Funny thing about this incidence, it was in the left leg, my so called "good leg" and my foot was turning out. Well at least they would have both been facing in the same direction if I we hadn't figured it out.

Thanks Bree, my ROM has returned to near normal (well my normal), which is very good news

[Kimba22]

Hi rdmc,

Good to hear you're doing better and the ER visit was worthwhile!! Glad you got the MRI (but sounds soo very uncomfortable ), was no injury, and you had an ER doc that figured out what was wrong.

(And to think wasn't that long ago pain wasn't "officially" recognized as a symptom in MS ... Still run across a few old timers who say, "At least there's no pain with MS.")

Hope all is well and you are still a happy camper with the 10 % increase. Was wondering how your other leg doing?

[rdmc]

Hi rdmc,

Good to hear you're doing better and the ER visit was worthwhile!! Glad you got the MRI (but sounds soo very uncomfortable ), was no injury, and you had an ER doc that figured out what was wrong.

(And to think wasn't that long ago pain wasn't "officially" recognized as a symptom in MS ... Still run across a few old timers who say, "At least there's no pain with MS.")

Hope all is well and you are still a happy camper with the 10 % increase. Was wondering how your other leg doing?

Funny thing, the leg that was so spastic (left leg) was my "good" leg, and I thought I was having absolutely no spasticity issues with my usually bad leg (right leg.)

But once that baclofen started to relax some of that spasticity in my left leg, I realized I was also having spasticity in my right leg. I guess my mind was so occupied with the pain from the left leg, it didn't realize there was also right leg spasticity and pain until the left one settled down a bit.

I'm going to wait a bit, but I might try a little more increase in a couple weeks. Trying to walk the ledge between walking with as little spasticity as possible, and "noodle" legs.

Seems the new dosage really eased things up for about 4 days and now spasticity is edging back in. This was how it was when I first got the pump, kept having to adjust up, then I went for a couple years without an increase in baclofen. We'll see, I might hold out for cooler weather and see what happens...only thing, in Florida, cooler weather shows up around November

[bluegiraffe]

Rdmc,
I was thinking about when you said it was just a few hours after the pump was increased that you felt relief.

I have always found ( and my physiatrist has said), results of a change in the pump dose takes a 1-2 days to take affect.

It's interesting you could feel the change quickly.

Hope you find the right balance (the beauty of the pump )

[rdmc]

Hey BG,

My physiatrist always says give the higher dose a few days to really see the effect, and that is true. Sometimes I'll think it didn't do anything, and within a couple days it does make a difference

However, with the larger increase in dosage, I've found that within a couple hous I usually notice some decrease in symptoms, I also think that those times happen when my I've let the spasticity progress to the extreme. When I had the test before I had the pump, I was amazed at how quickly I noticed some movement in my leg.

Hope all is well with you.