Question about PPMS diagnosis and disease course

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Re: Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Wed Feb 14, 2018 4:23 am

So you’re saying you think I’ve got periformis syndrome AND MS? Well that’s just lovely. Lol. I have had massages before and massage therapists have mentioned tight glutes in the past, but I don’t have sciatica.

When I noticed the pain in Mexico was after I got out of a heated pool. A big no-no for MSers, I know. My legs hurt on and off after that. But once I got back to cold weather, my legs improved.
Last edited by ebrownkirkland on Wed Feb 14, 2018 9:54 am, edited 1 time in total.
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Re: Question about PPMS diagnosis and disease course

Postby David1949 » Wed Feb 14, 2018 9:18 am

There is a simple way to tell what type of MS you have:
If you have relapses and remissions you have relapsing remitting MS.
If you don't have relapses and remissions now but had them in the past then you might have Secondary progressive MS.
I you don't have relapses and remissions and never did have them you have primary progressive MS.
Another clue is the age of onset. RRMS usually begins in the early to mid 30s. PPMS begins in the early to mid 40s. Although either type can occur at any age. It is just most common in those age brackets.
About 10-15% of all MS cases are PPMS.
Either type of MS can progress slowly or very rapidly.
I was dxed with MS over 21 years ago. It was later determined that it was PPMS. The first 10 years weren't too bad. But the last ten were tougher. I can still walk with my cane and foot brace but not very far, maybe 100 yards.
I also have muscle spasms in my left leg. It can keep me awake all night, but I do a few things that help:
Baclofen 30mg before bed.
Avoid coffee and caffeinated beverages.
Avoid alcohol
Cut down on salt and sugar
Don't get too warm at night in bed. Kick the covers off and stay a little cooler.
I do exercises in bed for sciatic nerve problems but they also reduce the spasms. (If I can find a video of it I'll post it later)

Hope that helps
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Re: Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Wed Feb 14, 2018 9:54 am

Thanks, David. Yes, this is very helpful. From what you've said, PPMS does fit my husband. He hasn't had any remissions since he started on this ride, but I have. And he's 44--right in the sweet spot for a PPMS diagnosis, unfortunately. Hoping the tests the doctor has requested show something other than PPMS. May I ask your age, David?
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Re: Question about PPMS diagnosis and disease course

Postby Scott1 » Wed Feb 14, 2018 1:02 pm


MS is a very general term. I've got cavitation and necrosis on my cervical spine, demylination in my brain and have tight muscles. I've had fatigue, brain fog, been offered wheelchairs, stopped two chambers of my heart, had a dose of autonomic dysreflexia, spent 10 years on Avonex, tried Baclofen and Tecfidera, had botox in my leg and been given an antidepressant for spasticity (once, I hated it). I've been carted off in ambulances and spent a fair bit of time in hospitals. I'm on Dantrium for spasticity which is a very specific and heavy duty drug.

I was diagnosed in the early 1990's. When that happened, they didn't have all these names for MS. It was just two letters and no treatment but a couple of days on steroids and a wave goodbye. Despite all that, this is what I look like (apologies if you've seen it) There is no reason to assume you cannot investigate your own symptoms.

If someone can definitively tell you that they have a test that determines you have a specific type of MS and that test is unequivocal and globally accepted as defining one type from another then I have never been offered it. I've lost track of how many professors, neurologists, doctors and physiotherapists I have seen and none of them have bothered to pin a type of MS on me.

A label that defines a type of MS is more helpful for medical practioners than it is for you. The further along the progressive path they put you the easier it is to admit the drugs aren't working and there is little they think they can do. These labels are not an aid to the person with MS. They are subjective determinations with no rigorous benchmarking.

You are much better off imagining there is nothing wrong with you and dealing with each specific problem one at a time. If you have fatigue then look at how you make energy from ATP (take CoQ10, aceytl-l-carnitine, magnesium), if you think you may have an underlying viral infection then try valacyclovir for EBV or go hard core and try Rituxumab. If your muscles don't move properly and the joints are painful then think about functional movement from pilates or botox if necessary from a spasticity clinic, if your bowel goes crazy think about pre and probiotics, if your eyes give you double vision or problems with light think about the causes of inflammation (bacterial infection ,mycoplasma, EBV etc). The same applies for the bladder. If you are over or underweight then look at your diet. Some foods cause all manner of problems so get a FODMAP test if you're unsure.

Whatever you do forget about the labels of MS and focus on the symptom that presents itself. Explore yourself. The doctor isn't ever going to be as interested in you as you are. Labels are seductive for everyone but the symptom is the main game.

Above all try to be happy. I still think you should buy the house that makes you both happy.

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Re: Question about PPMS diagnosis and disease course

Postby ebrownkirkland » Thu Feb 15, 2018 8:09 am

Thanks, Scott. Agreed on the house point. That's what we're going to do. At this point we are in pretty good shape. One of us could get hit by a truck tomorrow and die. Why plan for something we aren't sure will happen?
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