Is it a relapse?

[AZgal]

I think I might be in the midst of a relapse, but having only been diagnosed just under a year ago I'm not sure. Let me start at the beginning:

About a month ago, I noticed my drop foot getting considerably worse followed by my knee starting to give out in the same leg (this being the leg my first flare up targeted), to the point that people who don't know I have MS started asking if I hurt my leg. Went to see my neuro for a pre-scheduled appointment. He didn't think I was relapsing and sent me to PT.

About a two weeks later, my vision started rapidly getting worse. I've worn glasses most of my life and currently have a pair of transitional bifocals that I wear all the time. Now, though, I can't read shit with my glasses -- but I can't see where I'm going or drive without them. I've scheduled an appointment to get my eyes rechecked but really don't want to spend $400 for a new pair of glasses if it's not going to help.

Then today at work my leg started with it's going numb bullshit and feeling really heavy. On the way home from work, on the freeway nonetheless, it really kicked in making it hard for me to feel the pedals and tell exactly how much pressure I was using. Thank goodness it was during rush hour so we weren't moving too fast. My arm (the one my first flare up targeted) started acting up as well, but to a much lesser extent.

I have a follow up with my neuro in a couple weeks. Do I just hold out until then or should I try and get in sooner? I really am at a loss here and your input would be greatly appreciated.

be well,
AZgal

[Sparky10]

By all means, try to see the neuro sooner! From what I know, trying to halt a relapse shouldn't wait. Keep calling and pestering the office! Hope you get it nipped in the bud and feel better soon.

[AZgal]

Get cool? I live in Arizona where I can remember the last day it was less than 100+ degrees, maybe April. That actually reminds me of when my neuro said "Yeah, MS and heat don't play well together." and I said "You do realize we live in the desert, right?" -.-

Thanks to both of you for the input though, I am trying to get in touch with my neuro's medical assistants. The scheduling people won't reschedule my appointment unless I speak with them first.

be well,
Lisa

[ActiveMSers]

Lisa, if it is a relapse, a course of steroids may help (typically the sooner the better). But if you don't get said steroids, the trajectory of your disease over the years won't change one iota if you don't get them. So even though I collapsed in a ball and cried with my first big relapse post diagnosis, I recommend you don't do the same. Your doctors should be able to steer you in the right direction.

[AMFADVENTURES]

Hope you get in sooner rather than later Lisa, it does seem to be the best approach.

Larry

[AZgal]

Thanks AMF. I'm doing ok. It's still acting up off and on, but I am able to go to work. I even managed to go to PT the other day, though we didn't do as much as we normally would since I was having a hard time staying cool (even with an ice pack on my neck).

I think I'm just gonna monitor it in a journal and report to my doctor when I see him. It's not like they can really do anything and I still haven't finished paying for my last MRI which was done when my RLS decided to play havoc with my entire body. The MA wasn't much help, just asked me what I want to do. I'm like, "really?" Not helpful.

Dave, no worries. I didn't collapse into a ball and cry. I did, however, make myself a double Bacardi and Coke, limp out to my backyard, look up at the Universe and ask "Seriously? You didn't even give me a year."

be well everyone,
Lisa

[LivWell]

I had my first ever course of steroids the beginning of August. I'm still trying to emerge from a flare up that started mid-July. One of our doctors reminded me that steroids won't alter the course of the disease progression. So, I am really trying to stay in tune with what my body is going through and get a handle on what is disease progression and what might be remedied by steroids. Perhaps it's time to consider switching to another DMD. I've been taking Copaxone for almost 2 years, but having flare ups a couple of times a year (which were all manageable until this one.)

I believe the steroids course released me from the fatigue that I was having, but interestingly my walking is a bit worse this past week. My primary neurologist has scheduled me for another round of steroids and I'm thinking I will decline unless my energy tanks again. I don't want my body to become accustomed to them and the treatment become ineffective should I really need it in the future.

It's such a tricky thing MS; sometimes I wish it was a bit more predictable. Symptoms seem to pop up out of nowhere like Kato from The Pink Panther movies. I'm supposed to put on the moves to counter the ambush and continue about my day!

I'd be interested in hearing about others' experiences with steroids. Did they help shorten a flare up?

[ActiveMSers]

Sorry for the delayed response, LivWell. I wanted to address your steroid question in more detail. I've personally discovered that steroids are most effective if taken in the first two weeks of a relapse. And they often shorten the duration and severity of the relapse. How much? It all depends, but here are specifics on how I recovered on my last relapse in January 2010 after a course of steroids. This is what I reported (pretty anal, but what else would you expect)....

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Symptoms from early January relapse included severe leg weakness especially on right side, mild upper body weakness, significant fatigue, poor hand coordination, severe numbness in arms and hands, moderate facial numbness. EDSS on 1/7/10 a 6.5 (could not walk even a few meters without walker). Started 5-day prednisone course on 1/9 and conducted an informal strength baseline (exercising to failure). Retested strength two days later (1/11) and the gains were significant, especially in the right leg. Retested strength again on Jan 19 (upper body) and Jan 20 (lower body) and the gains are holding (in many cases getting even better) and dramatic. Average gains in the six lower body strength tests: 142% right, 31% left. Average gains in the six upper body strength tests: 23% right, 8% left.

Tibialis anterior: 300% R, 33% L
Calf: 213% R, 25% L
Quadricep: 163% R, 45% L
Outer Thigh: 39% R, 8% L
Inner Thigh: 64% R, 29% L
Hamstring: 72% R, 43% L

Biceps: 0% R, 0% L
Triceps: 33% R, 8% L
Shoulders: 33% R, 18% L
Forearm: 22% R, 19% L
Back: 33%, 0% L
Chest: 14% R, 0% L

Current symptoms related to relapse: lower body strength significantly improved, upper body strength improved, hand coordination improved, fatigue is gone, facial numbness mostly gone, arm and hand numbness down from severe to moderate.

Walking: Tested walking with physical therapist using unilateral support (single arm crutch). Achieved 100+ meters, rested 5 minutes, and then walked another 100+ meters, which would put EDSS at 6.0.

[LivWell]

That's pretty interesting - responses people with MS have to treatment can really vary. I don't think I got much benefit from the course of steroids I had. The doctor who worked with me this summer said I wouldn't see the effect of the steroids until a week after getting them.

I think I remember my neuro telling me the same thing about using steroids within the first two weeks. Thanks for the perspective in your post Dave.

[AZgal]

Thanks to everyone for your replies and insight. I didn't go for any steroid treatments deciding to just ride it out. Did get another MRI recently that showed no new or worsening lesions. Yea!

My leg hasn't gotten any better and am now forced to use trekking poles when I'm gonna be on my feet awhile. Not stopping me though - did the 2.5 mile MS Walk last week and just got back from a one week vacation in Maui.

I asked my neuro about my leg. He's reluctant to give me a brace as he says while it would help it would do more damage by causing muscle deterioration because it does the lifting work for me. When I asked why it had gotten worse when there was no "new" damage, he said sometimes it takes awhile for the extent of the original damage to manifest. Anyone ever hear of that?

be well,
AZgal