How do I push for a DMD?

[lovemy6monkeys]

Back at the end of May I saw my neuro for an issue I was having. It was warm, I was overly warm, my temp was higher than normal. He saw what I'm like if I get warm, and said I'm showing Uhtoffs. Along with other issues I was having, he said I'm showing "Classic MS symptoms" and started me on a course of IV steroids w/ prednisone taper. He said he wanted me to come back in 2 weeks, with my husband, to discuss starting DMD's. So, we went back two weeks later, me assuming I had been diagnosed. My doctor then says that he is not sure and he does not want to treat me with the wrong medicine and do more harm than good. I can understand that...but as far as I'm concerned, I'm keeping my MS diagnosis until he comes up with something else. I asked him straight out how sure is he that I have MS and he said 70% and decided to order a lumbar puncture.

I had that done this past Friday. I'm pretty much resigned to the fact it will come back normal/ negative. That is just the way things have gone for me on this journey.

I was "diagnosed" with CIS after the bout of vertigo at the end of April. I have been reading that Copaxone is approved for use if you have had CIS and not fully diagnosed with MS.

If the LP comes back with no o-bands, I'm going to push to be allowed to start Copaxone (the DMD I was planning to say I wanted to start when I thought I was going in to decide on a med).

The problem is I'm not good at arguing and I have no clue how to push for Copaxone if my doctor is not of the mindset to start it at this time. I've had two "suspected MS attacks" a month apart, one the end of April the second the end of May. Both times I did IV steroids w/ prednisone taper and that helped.

I just want to do *something* to give me a fighting chance against having a major symptom start, one that will effect my daily life in a more drastic way than my current symptoms do.

Thanks for any advice you can give me!
~Jess

[sllowe]

Guess I'd have to ask what is left to look into. Dr. should be able to tell you what makes up the 30% of uncertainty after the LP.

If you are dx'd with CIS, the DMDs should be offered to you. ALL of them. DMDs work best in the early phases of MS. The studies prove it - it's that simple and your Dr. should know this.  

I think we have the stats in or HPs, but if not I'll have them at the ready just for good measure incase you need them for the appt.

Thinking positive, and waiting alongside you!
-Shell

[Rubyrocket]

This is the hard part.......waiting......and waiting.......and waiting. I had my LP on Friday as well so I don't have any words of wisdom and experience, but just know you are in my thoughts. I never thought I would actually hope for an ms dx, how messed up is that lol. Keep me posted.

Joani

[twopack]

I very much want to contribute here Jess.  Our experiences with our treating doctors have a lot of similarities.  But I have to get ready for work and I'm moving v-e-r-y s-l-o-w-l-y today.  I fear I've used too many of today's spoons already and might stall out before I get back home tonight.

My intention is to get back to you in the next day or two.  If you don't see me, please jog my memory with a wake-up message.

Mary

[essdipity]

Wow, did you give (and get) some good advice! Sarah, I can see your counseling training coming out in spades, and I know your methods work.

For myself, I've had good success with neuros by acting pleasantly intelligent and somewhat informed. I don't use medical terminology unless the doctor has just used the same word. I admit this amounts to dumbing down, but it's just a small amount, enough, I hope, so that I won't be silently accused of overblown web research, or even worse, hypochondria. I make sure to smile here and there. Sometimes I repeat his phrase in slightly different words, so he'll know I'm following him.

Then of course, there's the big gun in my attack, my friend on the west coast who's a doctor with MS. (Guess who?) This friend has been doing some reading for me (and herself, natch) and she tells me that CIS is well within the guidelines for MS treatment. Smile. I was wondering if 'you' have that approach too. etc etc.

And so on. This does sound phoney baloney, and I ordinarily am not a manipulative type. I'd much rather be forthright, and I am, even with most doctors. Still, ya gotta play the hand ya got, so this kind of thing might be necessary.

ess

[Sparkysarah]

Have you also had VEP tests as if these were abnormal they could add a little more weight to the dx of MS (but if normal...you can still have MS).

My advice comes from counselling teenage students who often had difficulties with confidence and assertiveness, as teachers ususally perceived them as being argumentative or the reverse that they had no conifdence.

So the first things is that therre is a difference between being "assertive" rather than being "argumentative."  It sounds as if are perhaps erring on the "passive" side however and need some help with becoming more assertive so here goes.......

The golden rule is to keep your temper, to stay calm but be persistent.

The next step is to always own what you say using "I" when you talk e.g.
I feel disappointed when you tell me xyz..... rather than "You make me feel...... which is more aggressive and blaming.

The next step is if there is a disagreement or difference of opinion make sure the person you are talking to feels acknowledged so instead of saying "I disagree..."
use "I hear you say that you do not think I have a dx of MS BUT.........." then use the evidence you have to assert yourself.

This is sometimes called "fogging" e.g. a teenager is doing their homework and Mum wants them to do the washing up NOW. So the lad asserts himself saying "I hear that you want me to do the dishes Mum, but I am in the middle of writing some course work, so would prefer to do it when I have finished." (Of course when it is my kids and I want them to do something I am sitting on the other side of the fence as MUM!!!)

If someone tries to stop you in their tracks use the "broken record" technique keeping very calm, not raising your voice and repeating what you have said several times to get your point across starting at the begiining each time until you manage to say everything that you want to.

Finally if all else fails "negotiate and compromise" so try and find some middle ground, where you both accept that there is a difference of opinion..but find something that you can agree on for the next time you meet..whether it a futher test, or still giving some hope that a DMD will be offered.

The most important thing is to feel that you have been heard and have not walked out of the appointment passively like a mouse! Find your voice and use it and see if you can practise some of the techniques above to find your assertiveness. We all have it in us Jess and you will be surprised at yourself when you feel passionately about something at the confidence that is within you.

Hope this may be of some help (even with your 6 monkeys if nothing else!!).

With love and hugs

Sarah