It’s probably just fear but....

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It’s probably just fear but....

Post by scdiva81 » Thu Feb 14, 2019 11:43 pm

Hi Everyone!

Long time lurker, first time poster....

I feel like I have transitioned into the Secondary phase. I have noticed an increase in relapses, every few weeks (where previously, I would go months without much activity). Of course, it could just be a new lesion but I feel like it’s disheartening to go for another MRI, only to be told, yes, you have MS. Again.

However, my real concern (which is where the fear comes in) is the fact that I am starting to have more pain in my legs. Initially, when diagnosed, it was my worst fear-to potentially be in a wheelchair. However, as my acceptance of it has progressed, I fear it less and acknowledge that it is simply part of my path. Maybe.

So, I would like to ask the group, those of you who require ambulatory aides, how did it start? How did you know that you needed a cane, walker, wheelchair, etc?

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Re: It’s probably just fear but....

Post by 1eye » Fri Feb 15, 2019 10:59 am

I have a wheelchair but I only use it when I can't go the distance with my walker. My legs have hurt lately but I have been classified secondary progressive for many years. Once you have used a cane you can be classified SP. It does not mean anything about what your future holds. As far as I have been able to tell nobody can predict that. "attacks" are a thing of the past. You could be hospitalized, and it could be called an attack or exacerbation, but that description is meant for medical people. Not for you.

The main thing to know about being classified as "secondary" is that doctors will no longer prescribe anything but symptomatic treatments like baclofen, that all of medicine has given up on being able to "modify" your disease, and therefore they will not ask any insurance provider to pay for any "disease modifying" treatment. If you want it you'd better have the money. The only exception for SP might be biotin.

They can't give you anything that is guaranteed to get you your drivers license back (so don't give it up except under force), and nor can anything they give you make anyone give you your job back (so don't give it up either). Of course don't listen to me. Not a doctor.

I started using a cane long before my walker, long before I left my job. When I use it now, my arm wobbles, so I mostly use my walker.

The most important thing I can tell you is, don't fall. I repeat: don't fall. Many falls have taken me by surprise, leading to broken bones and bleeding. I have had concussions. That's why you might need a walker or wheelchair. Don't fall in the hospital. Everyone, even the janitor and the cafeteria lady, will know in less than 12 hours. The reason not to do that is it is a leading cause of paperwork.

In the last few years I learned something about head circulation. It is disturbed by a posture change. Sitting to lying down, but more importantly going into standing up. If you have MS, it will take 15 or 20 seconds for your head circulation to stabilize after a posture change. Do not try to walk until that 20 seconds is up. You may fall. After that you are safer. Really. I mean it. Save your head.

If you are on coumadin or blood thinners, falls mean bruising. All over. I don't fall nearly as much as I used to.
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Re: It’s probably just fear but....

Post by scdiva81 » Sat Feb 16, 2019 12:35 pm

Thank you for sharing your perspective.

I haven’t even considered the driving angle but I think that what you said was smart.

I am not quite to the falling over part but that may be in my future. I have definitely noticed being more and more unsteady.

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Re: It’s probably just fear but....

Post by Jaxson » Tue Feb 19, 2019 11:43 am

Hi I agree with everything 1eye said, from my own experience go as hard as you can ms will take most everything physically but for most it takes years and years . At first its easy to accommodate and accept the challenges that come,as you graduly progress the ways you accommodate disability becomes harder. The pain in the legs , spastisity, atrophy, dependency, hoist , chair all toys a guy wants at 53 I'm still scared 27 yrs later . Do the most you can :)

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Re: It’s probably just fear but....

Post by Scott1 » Tue Feb 19, 2019 1:23 pm


At the moment, you're still mobile. Aches and pains, tight muscles and a raft of other issues are all experiences we have.
My legs and feet were more painful 20 years ago than they are today. I still have a lot of issues associated with tightness but I'm now a long way from a wheelchair. I used a heavy regime of pilates, a lot of massage, dry needling and a powerful drug called Dantrium to be at this level.
When you say you have pain in your legs, where abouts do you mean and what position makes it most noticeable? Upper or lower, front or back of the leg? Do you have any pain in your torso? What do the soles of your feet feel like? Do you have a limp or are you twisted when you walk? Do you have a normal gait? How high do you lift your feet off the ground? Is one side worse than the other?
There's a few things to consider so a better picture helps.


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