How Fast and Far...

by Sally
(Milwaukee)

...Can You Fall?

In October 2011, I got optic neuritis. Methylprednisolone and prednisone taper was given, and did not help much. In fact, while on the steroids, I started to get "seizure" episodes. A second bought of ON in January found me on the steroids again, this time with NO improvement.

Now over the course of 3 weeks, I have completely lost my ability to walk, my one side (leg, butt, side) is completely numb, like I've had an epidural. The weakness has crept all the way up to my face, making it hard to whistle, or "clean" a spoon with my lips.

Everyday I think it will start to get better - but it's not. I've had no remission since this nonsense started. Up to this point I've been an uber-healthy 48-year-old.

My Dr. just says take more steroids and see what happens. I say that's not right. Has ANYONE experienced anything that drastic, this rapidly????

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Mar 23, 2012
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It Depends Part 1
by: Akrista

Hi Sally,
I know I've taken awhile to post an answer to your question. I was hoping someone who has experienced this would see it and give you a better answer than I could.

For one, I don't have MS - hubby, Cir does - so I'm merely a spectator, very close, mind you, but still only a spectator. I've seen MS patients who have progressed very rapidly, and I've seen those who are still walking around like nothings wrong (invisible symptoms).

MS is a condition that you learn to respond to based on what's happened in the past. When you have an exacerbation the first time, you try something - whether it's steroids or some other anti-inflammatory medication.

If it works, you may try it the next time you have an exacerbation, at which time it might not work. So, you try a different steroid medication or a different anti-inflammatory. That works.

If you're on one of the disease modifying therapies, they should lessen the number of relapses you have. If they don't, you should probably talk to your doctor about trying a different one.

The length of time the exacerbation lasts depends on a few things. What you're taking and how your body responds to it. How far into the relapse before you begin - or how much damage was done before you began a treatment.

In the relapsing forms of MS, you may or may not recover to the way you were before the exacerbation. It just depends on how your body reacts - to the MS, to the treatment, to the damage caused by the relapse.

How someone responds to MS, is an individual thing. Someone's answer to your question may be either similar to what you've experienced or totally different. MS effects everyone differently.

I know you probably don't want to hear that, but that's one of the reasons doctors hesitate to give you a prognosis. They'd rather watch and see what happens, see what helps, what hurts, what is available to try that won't harm too much.

Many, like Cir's neurologist, follow and watch the research on new and upcoming medications and treatments closely. Sometimes the doctor will say he wants to wait for more studies or research to come in before recommending something.

In answer to your question, you could fall fast and it could last long or not. The steroids could kick in and the exacerbation could be over in a month, or even weeks or days. It just depends.

(This ends part 1, see part 2)

Mar 23, 2012
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It Depends - Part 2
by: Akrista

And this exacerbation could end and you'll be back to normal for months or years. The best thing to do is to become healthy in between exacerbations as much as you can, which it seems like you are already doing. Eat foods that are good for you. Try to exercise if you can, something low-impact. Get enough rest, or at least try not to over do it.

Take care of yourself. Listen to your body. Know what triggers your symptoms to get worse and avoid those things like the plague. For the most part, MS is about managing the symptoms you have everyday.

Some days all it takes is making sure you leave yourself plenty of time to get ready before going out and stopping when you know you've had enough. Other days, no matter what you do, it's not enough.

You probably do this already, but try to become a good listener when your body talks. Look in your bag of tricks (the things that have worked in the past) and try them. That may seem like a "shoot first, ask questions" later approach, but if you can do something to ward off a severe attack, so much the better.

NOTE: Not sure if you've tried any of the CAM (Complimentary and Alternative Medicines) for MS, but do some research to see if you think something like that would help.}

Some flares or attacks, come on so suddenly, we're left scrambling to find out what caused it. Fortunately, they don't last forever. He eventually comes out of it. We've learned lessons from each exacerbation, and sometimes we can see them coming, but sometimes, not so much.

Hope this answered some of your question. If not, hopefully someone else will chime in with a better answer. Bottom line, MS sucks and I hate what it does to Cir sometimes. But we've learned to live with it and fight back when necessary or roll with the punches the next.

Take care,
Akrista

Jan 11, 2015
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so confused
by: michelle

Hi everyone.
Hope you can help. I'm Michelle and I'm 47. Seven years ago I had a very bad car accident, but I never recovered. (I'm) always in pain. Doctors took my pain medication to the limit and I still was crying with pain so I went private to a spinal surgeon.

I thought the pins and needles in my arms and legs and the headaches were all coming from spine. (I) had my spine MRI done. (They found) slight damage, but nothing to warrent the pain I was in, so I was given a steroid epidural to help me walk and they sent me for a brain scan. This scan showed up four lesions and I was told that I had MS.

I'm waiting to see the neurologist. I haven't been able to walk with out help for a full year now. My entire left side won't function properly. Can't put my chin into my chest. I get an unbelievable vibration through my body. I wake from my sleep with a stinging sensation behind my eye.

Every day for the last year has been so frightening. What happens to me now? Can any one tell me what to expect from the neurologist? I'm struggling so bad just to get through each day. I can't leave the house any more on my own and I can't stop falling asleep.

Jan 21, 2015
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Try Not to Stress Out
by: Akrista

Hi Michelle,
I know telling someone not to stress out does little for them when you are so uncertain about what is happening to you now. However, that is probably the best advice I can give you when it comes to MS. In our experience, it seems to feed off of stress. In other words, it gets worse the more stressed out you get.

It's very soon since your diagnosis to be at a point where you can accept that you have this disease and begin to manage the symptoms from day to day. That's basically what happens when someone comes to terms with the fact that they have MS.

They can begin to look at the symptoms they're having and do whatever it takes to manage them, whether that's getting more rest (which you do, even though you are stressing about it), taking supplements like vitamin d3 and B 100 Complex, eating more healthy (check out the AIP Diet), or meditating to help relieve the stress you are feeling.

One thing that may help you make sense of all that is happening until you get to your neurologist is to begin writing down every symptom you have. You should also write down every question you have -

*What can I expect?
*What is the vibration in my body when I put my head down? - (most like L'hermitte's Sign).
*What is the stinging sensation in my eye and what can I do about it? (probably optic neuritis).
*Why doesn't my left side work properly? - (my husband, Cir's, right side doesn't work very well.)

This is because the lesions in your brain have caused nerve damage on the right side of your brain that controls the left side of your body.

One of the things I did was read. If you have a Kindle or other eReader, look up books on multiple sclerosis and read them (or listen if reading is a problem). You can also work your way through this site. Read some of the stories and some of the poems.

When you see your neurologist, they can answer many of your questions and help you decide if you want to start one of the treatments available for MS. There are oral medications and injections - all that are supposed to slow the progression of the disease.

If you can remember back to when you first started feeling any of the symptoms you are experiencing, that is most likely when your MS began. Most people can remember symptoms in their late teens and early twenties. They just didn't know what it was as the time and attributed it to something else.

You may have been steadily progressing with Relapsing-Remitting MS (RRMS) over the past 20 years and then the trauma of the car accident caused a major relapse and you developed Secondary-Progressive MS (SPMS). Time will tell. The neurologist can give you a better answer after talking to you about your symptoms and examining you.

Again, it's easy to say, don't be stressed out, but just know this - many people have learned that they have MS and still lived productive lives. Traveling (in a wheelchair), blogging about their experiences, exercising, and more. They just have to learn how to do things differently. When their body says rest, they rest.

When they're having a good day, they make the most of it. All is not lost. Your life isn't over. It's pretty scary right now, but in time, hopefully things will get better.

Take care and be safe,
Akrista

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