SPMS - Do I ask?

[Guitar_grrrl]

I read Quix's post on RRMS to SPMS with interest.  I'm wondering if I'm making the transition.  This last year I had three exacerbations, and each left me with more weakness, more dizziness, more stiffness, spasticity and fatigue each time.  These symptoms have never resolved, and I feel like I'm progressing.  It's not fun!

So...do I ask my neurologist if this transition is indeed taking place, or do I wait until he volunteers this info?  I'm not sure what difference it would make.  

TIA,
Guitar_grrrl

[Quixotic1]

I'm not a believer in passivity when it comes to our health care.  I would take pains to describe to your neurologist what you said here.  Tell him what you told us.  Ask him when the "Remitting" part comes in?  You can ask point blank if you are "progressing to another level".

But, also be frank with him that your insurer is stingy.  If there is ANY way that he feels you could still have benefit from a DMD, then stay there.  But, if it looks like Tysabri is your best bet at slowing this, I don't see how your insurance could say no - on appeal.

You could also ask if there would be any benefit to moving up to a higher dose of the Interferon - that would be Betaseron.  I forget why you stopped the Rebif.

Quix

You are clearly having exacerbations and it sounds like you might be moving into a relapsing phase of SPMS

[tonyad]

  My personal opinion on this is that if you feel like things are changing than "Yes"!
You should talk to your Neuro about it.  If you do not discuss this with him you
will constantly be wondering.
   Besides, you know your body better than anyone and what is normal for you
and what is not!  After all, he works for you! You pay him for his services so he should
give answers to your questions and if he does not know, then he should investigate!
    No difference than if you took your car to a mechanic, had a tune up (check-up),
then after a couple months noticed a noise coming from the engine. You would not
hesitate to take it back and question him to find out what was going on with it.
Hope all that makes some kind of sense  :)

    Hope you get some answers. One's doctor should "Never" intimidate the patient!
EVER!  Have a Great week.
~Tonya
    

[Guitar_grrrl]

Ren and Lulu,

I stopped Rebif this last November (two months ago).  My neuro wants to start me on Tysabri this month, as he feels my MS is very active these days.  I see him again this Thurs.

Good point on the insurance angle, however, my insurance won't pay for ANYTHING that isn't generic.  I can't change anything until open enrollment in November.

I'll sit tight...
Guitar_grrrl

[Lulu54]

Hi GG,
This is the elephant in the corner of the room for so many of us.  I suspect I was already SPMS when I was dx'd because I don't have relapses at all, just a slow increase in noticeable problems.  

Whether I am RRMS or SPMS doesn't really change anything, except perhaps my insurance's willingness to pay for my DMD. So I am happy to go along with being dx'd with RRMS.  

Ren is right about talking to your doctor about the dmd you are on and having the talk about changes.  

be well,
Lulu

ps -welcome back from paradise!

[rendean]

I have asked my neuro this question since my last relapse lasted at least 9 months  and I was getting frustrated. My neuro is a very patient man and I feel comfortable asking him ANYTHING.

His response is he  was not ready to make that dx yet.  After that response, I didn't probe any farther because I decided I didn't want to know anymore.

What DMD are you on? If you think he might want to change it to another DMD, perhaps you do want to bring up this subject to see what treatment plan he would use if he did indeed want to change your DMD.

My two cents,
Ren