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My MS has been mainly progressive (for 22 years)

As I posted a few days ago, I’ve been doing 15 minutes of balance exercises (standing in a corner with feet close together) for the past week. For the first few days, I saw consistent improvement but today I was worse at doing it. This took me back to learning yoga 23 years ago. I remember noticing, about a year after I started, that my balance was worsening rather than improving. It was very competitive, strenuous yoga (Ashtanga Vinyasa) and we all always expected to improve.

In fact, although I have had improvements in my conditions occasionally, in general I have seen downhill progress of my disease, for many years, before and after diagnosis. Have I had progressive MS for the last 23 years? Is there any way of knowing? Should I get off the Tysabri? I’ve not seen many signs that it is helping - I’m in a much worse state than when I started it three years ago.

Any views welcome - I think these are very hard questions.

Hi Sewing Chick,

I can’t comment on your MS as I’m very new to it myself.

My Physio however is awesome she believes strongly that whatever the type of MS with regular balance, core training and fitness work we can improve and keep function. We all have off days (I have struggled with the heat) the last couple of weeks. Stay positive write off the bad day and try again tomorrow. Sorry if this doesn’t help the over all questions you have.

Snowqueen

I don’t know is the answer, does you neuro regularly mri you, and is this reflected in how you are. If the current dmd is not helping have you discussed lemetra if you feel that you are still progressing.its horrible when you do everything possible and you are powerless in slowing things down. Maybe the dmd is not suitable for you or maybe this is just how it is but without trying something else you wont know. Why some people progress from the beginning and some see improvents and declines is beyond me, it just doesn’t help saying we are all different. Keep trying xxxx

I am certainly still progressing on Tysabri. When I started on it, (Sept 2011) I was walking with one stick and driving myself to the hospital. I stopped being able to drive more than a year ago - these days I am struggling to get into a car at all on a bad day. I use two sticks now and can only walk for very short distances - struggling to walk round the house really.

I sort of see two neuros (too complicated to say why). Neither of them MRIs me regularly.

If you have been told you have progressive MS, how did the neuro decide that this is what you have?

Howdy folks!

Sorry to be a harbinger of a negative viewpoint, but my comments are based purely on my personal experiences.

I have found that (…all through my life, not just MS-related) introducing anything new (exercises, medication etc.) catches your system off guard initially and is potentially effective at the outset.

After a few days, it’s almost like your system says “…ahh …I see what you’re trying to do. Well, I’ve already settled on a timetable, so I’ll make adjustments as necessary to stop this new aspect spoiling my plans!!” …and then - after the initial effect - it’s almost as if the body says "…I’ve now figured out how to stop this working - so on with the plan!!)

Does that make any sense at all ?

I often wonder if I have already subconsciously decided that nothing is ever going to work in relieving issues …coz so far nothing has !!!

Dom

It had long been the assumption that damage from RRMS accrued wholly or mainly during relapses, which would mean no relapses=no progression.

However, in recent years, I believe research evidence has increasingly been challenging that assumption, and pointing to a more subtle disease process, that is ongoing quite independently of relapses.

Thus no relapses is NOT tantamount to no progression (probably!). But I don’t think that means everyone with RRMS should be redesignated as progressive. It just means there is a change to our understanding of what RRMS is actually doing, and that it’s not driven wholly by relapses.

Tina

Yes I agree with Tina. Damage done in the past - which may “seem” to get better may come back to haunt us at a later date as we age.

For example severe sunburn as a child may lead to skin cancer in ones 50s.

I had radiation treatment 25 years ago and at the time suffered from inflammation of my spinal cord. My symptoms at the time was l’hermittes. I have developed problems in the last 5 years - progressive right leg spasticity/foot drop. One neuro thinks that the damage that was done 25 years ago has caused me to get early degeneration in that area. Another neuro disagrees so I am not sure although my problems are like MS I just dont tick enough boxes for that DX.

The neuro said to me that SPMS is when there is this age related degeneration under old lesions (ie area that were damaged in the past and that the way forward for this is treatment with neuroprotectives. This degeneration is not caused by the immune system so DMDs wont work. However by continuing with the DMDs will surely stop you getting new attacks and lesions.

The neuros are now thinking that by attacking MS early and reducing the lesion build up then progressive disease will be less likely as the damage has not been done in the first place.

To me this makes sense.

Moyna x