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11079760 tn?1483386130

Update: 1st follow up post Dx

I just wanted to give a quick update following my first post Dx appointment with the MS neuro. I think the only reason I had the appointment was because I called the office a few times with questions and concerns. It was a little strange as I had to go alone this time (hi by is traveling for work). All in all, it was fine.

Bottom line is that I have enough questionable new symptoms since last fall that there is a question of new lesions. However, since the Sx aren't terribly severe and I have only taken 2 full doses of Plegridy, it really doesn't make sense to do scans now. The drugs need more time to make a difference.

Next steps are:
1. Another low dose of steroids to try ton help with a couple of issues - mostly significant pain in my right foot/ankle
2. Brain, c-spine, and t-spine MRIs scheduled for late August with a follow up the next week.

That's about it. Blood work was done to check D and liver function. That is always so difficult as I have very uncooperative veins (30 minutes or more to get 2 vials!). My fingers are crossed for some relief from the steroids, and I'm trying not to think about August. Early September 2014 and 2015 mark the dates of my most severe attacks. This will be very close to year #3 and I am certain I will be holding my breath.
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11079760 tn?1483386130
I just thought I would let you know that the steroids are really helping my foot/leg. I started a run/jog program to train for a 5k. Monday on the treadmill (pre-doc appointment) was awful. I questioned if I would be able to continue. The pain in my foot/ankle, my legs turning into cement, and my inability to pick up my right foot (stubbing it on the treadmill belt at regular intervals) + awful balance left me feeling very uncomfortable.

Day 2 was today (supposed to be yesterday...but sometimes life doesn't work that way). I'm 2 days into my 6-day regimen, and what a difference. Sure, I'm crazy out of shape & overweight so I would be lying if I said I felt good. BUT, the challenges were "normal". Stuff I could push through. Nowhere near my Monday experience. Plus (bonus) I have been able to walk around the house without shoes & without hobbling.

Maybe it will be short-term, but I'm riding the wave now. The last time I took this pack, I got the most benefit in days 1 and 2, then stalled. So I don't expect more (I'm tapering down), but the improvement in 2 days has been remarkable. Fingers are crossed.

Cheryl
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1 Comments
Hi Cheryl,  
so glad you are getting there, and day by day it's getting better.  Take care.  T
Avatar universal
Hey Cheryl, I agree with ess on the low dose steroids, I think maybe a good route to take would be to try to figure out the cause of the pain if you haven't already (nerve, spasticity) with a physiotherapist or someone in that field of expertise.

I am currently doing physio for ankle/foot issues and it turns out that even though I have calf spasticity, the cause of my issue is not MS related even though most of my medical team assumed it was.

I am glad your neuro is waiting a bit for new scans. It does take a while for meds to kick in.

It might be helpful to see if there is a pattern to your symptoms (are they daily/sporadic, temperature/weather when they appear, that sort of thing). Sometimes if there is a pattern you can avoid it in the future or find a way to have it affect you less.

Good luck!

Corrie
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1 Comments
Thanks, Corrie. My husband has been encouraging me to write more things down, too. I think it goes along with my hissy fit over taking the DMDs (and still questioning if this has all really happened or if there has been a big mistake), but I am fighting that process. I am my own worst enemey, I know!! Will try to put my pragmatic side back into action & start tracking more. Finding a pattern would indeed be useful.

Cheryl
Avatar universal
Hey there. Yes, a new drug treatment needs time to prove itself, and most neuros will allow up to a year before deciding it isn't being effective for you. So of course there's no choice but to just wait. That doesn't mean it's likely you'll have a relapse in late summer. MS is much too unpredictable for that.

Also, do feel free to call your neuro with questions and concerns. They get paid the big bucks for that, among other things. And you might get in touch with your local NMSS chapter. They often have programs for the newly diagnosed and can offer other kinds of support.

Finally, low doses of steroids very seldom abort MS symptoms, and in my opinion are worse than useless, as the potential side effects of steroids warrant their use only when the payoff is big too. I doubt you'll find many here who would go this route. If neuropathic pain is an issue, you'd be much better off to take something like Neurontin (Gabapentin). If you're having problems with movement, then IV steroids would be indicated, all depending on how serious the problems are. Just my opinion, of course.

Hang in there and let us know how you are.
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1 Comments
Thanks, ess. I appreciate your advice & perspective. The low dose steroids gave me a lot of relief last autumn, so I think I was hopeful that they may take the edge off this time, too. I feel so stretched trying to manage career & home with all these doctor appointments! The idea of making yet another appointment with another doctor is less than appealing. I guess I took the easy way out this time & am hoping for the best. Probably not the most informed or useful decision....

Cheryl
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