thought i'd ask you guys

[insomniac]

Does anyone have any insight into this?

I’m going to ask my neuro some questions but it always takes ages to get an appointment so thought I’d ask you guys’ opinions.

When RRMS gets to the SP phase, does the progression mean a very slight increase in, say, numbness until your whole foot is paralysed?

Does it ‘come and go’ so some days you won’t feel any numbness, some days you will?

And does it mean the progression will eventually paralyse that foot, or can it just make it half paralysed before moving onto another area of the CNS?

Just some thoughts I’ve been having that are driving me nuts sometimes.

[toot2818]

Sorry to hear you can't get an appointment fast. Maybe you need to say it is an emergency.

I have RRMS now for 26 years. Things have changed for me over time. Only way to know if what's happening is with an MRI.

Are you doing any treatment? I think that is important to be on something.

Good luck,

toot

[jreagan70]

When RRMS gets to the SP phase, does the progression mean a very slight increase in, say, numbness until your whole foot is paralysed?

Numbness and paralysis are separate issues, and one does not lead to the other. It depends on where the lesions are.

Numbness is an issue of sensory nerves and paralysis is an issue of motor nerves. If a lesion affects only sensory nerves, there can/will be numbness without a motor issue. If a lesion affects only motor nerves, there can/will be paralysis without loss of sensory function.

If a lesion occurs in a place where it affects both sensory and motor nerves, there can be problems with both functions. If a lesion that affects sensory nerves occurs along with a separate lesion that affects motor nerves, then both functions will be affected at the same time, but they are still separate lesions and separate issues.

Which function is affected is determined by where the lesions are, and that's unpredictable.

I'm paraphrasing here, but you'll get the idea. Tony Robbins, the motivational speaker, has said that the quality of a person's life is determined by how comfortable they are with uncertainty.

MS is unpredictable. There is no way to know what parts of the nervous system are going to be affected and how it will play out. Nobody can tell you what's going to happen with your MS over time. As Tony Robbins said, the quality of your life will be determined by how comfortable you become with that uncertainty.

[palmtree]

I'm not a fan of motivational speakers but there is definite uncertainty with MS. I create my comfort by being fatalistic.

[pennstater]

Hi Insomniac,

My under standing of secondary progressive means you no longer relapse. With a relapse, you nay or may not recover fully.

Sometimes, when sensory symptoms like numbness and to gluing come and go, it can be from fatigue, heat, or even a body temp that changes as little as 0.5 degrees.

I try not to focus on the what if and the unknown with MS. All life is really an unknown. So I try to keep that in mind and take it day by day.

Make sure to talk to your doc about your concerns.

[insomniac]

ty for the replies guys

[Mamabug]

...

Does it ‘come and go’ so some days you won’t feel any numbness, some days you will?

And does it mean the progression will eventually paralyse that foot, or can it just make it half paralysed before moving onto another area of the CNS?

Just some thoughts I’ve been having that are driving me nuts sometimes.

I think, just like RRMS varies incredibly from person to person, probably SPMS does too. Progression could involve feet, or numbness, or could be something totally different, such as increased fatigue, more mobility problems, mental health issues, cognitive problems, vision issues, etc.

[22cyclist]

Generally you know you have SPMS when you have had MS for over 10 years, and you don't really get exacerbations anymore, its more of a long steady decline. People with SPMS can get exacerbations because they can still get and do get lesions, you just don't get that clear bounce back of the remitting phase anymore.

You can always call and ask to speak to you neurologists nurse to ask her that question. That way you will either get a call back from the doctor or the nurse can tell you what is in the chart.

Take care
Lisa