Not going through with MRA for subclavian steal

[wiggles94]

OK - Penny for your thoughts -

My 2nd opinion neuro (who seems less convinced that my first neuro) that I have MS scheduled me for an MRA thinking I may have subclavian steal syndrome (blocked artery).  btw - i initiated 2nd opinion - first neuros said most likely MS and treat after consulting with MS specialsit from Phil.

I have waited for 3 weeks to be scheduled for this test, and to have the office authorize the provigil script.  This happened before when this office scheduled me for some other tests (which turned out to be neg - at the pop of 1100 a piece to my insurance com).  I had to call a few times to see where we were in the process and was told each time by the same person, that it was the docs fault it was taking so long because he is new, and doesn't understand procedure.

SO with all this time to think - waiting for the MRA - I have decided NOT to do it, and sent the neuro a very nice e mail explaining - seems like a long shot - so tired of testing, the stress of this past year  etc.  I also let him know what the scheduler had been saying about him as I thought it was so unprofessional.

So I have decided to stay with my original neuro who has me on DMD (rebif) - and am done looking for now.  AND I don't have to travel - my first neuro is in my hometown.

The 2nd opinion neuro sent me back a very nice e mail stating that the SSS was a long shot, but I should keep this in the back of my mind.  He said he would be happy to help me in the future if I change my mind.

Here are some other reasons I decided not to go back to him:

He spent more time looking at my MRI than me (I have 13 lesions on brain - none on spine ) done on 1.5 machine

He told me that it didn't really matter if I was on DMD - If I have MS, it's mild and if I have another exacerbation, he would be able to take care of it easily with steroids, and then I could go on DMD.
I asked him if he could guarantee that, and of course, he said "no"

First visit with him he said it seemed more like a cns vasculitis -(even though ruled out with first neuro)
2nd visit he didn't say anything about CNS vasculitis.

Didn't seem to really hear any of my sx

Said that since I didn't have any new lesions in follow up MRI -(It has been 6 months, and I have been of Rebif)  - seems less likely that it's MS.

No spinal lesions make it less likely.

And the one that intrigued me the most - I had increase in myelin basic protein, but he doesn't think that means anything.  No O bands and IgG make MS less likely.  Why am I demylinating?

BUT subclavian steal syndrome IS MORE likely with my symtoms/lesions, high ANA, high myelin basic protein levels???  I am not overweight, old, (well not THAT old) , don't smoke, am very fit.

Sorry - just had to vent a bit.

SO I have to say that since I made this decision, I feel great relief!  I am NOT looking any more, and being on the DMD can only help - and won't hurt if it turns out not to be MS.??? Right?  

I called my favorite PA who was with my first neuro's office (he has since left to work in a hospital setting) and he was always the one who saw me in my local neuro's office.  He felt it made more sense to have a carotoid doppler study done. (not sure I spelled that right).  And he has been saying all along that I should treat for MS.  But he felt it could wait until I see my GP again - in Feb - and then ask him to order it, and go from there.  

Sorry this is so long - but I have learned so much from all of you, and just wanted to pick brains.....do all of this make sense????

One more thing - have you heard that if you don't fit the McDonald criteria - am "possible MS) and you don't have new lesions in a 5 year period, then you probably don't have MS and are safe to go off DMD?

Thanks for reading this!

[wiggles94]

Thanks for your support!
And thanks for all you do for all of us on this site!  You guys are the best.
Carol

[wiggles94]

Thanks Pam.

I know this is such a long process - I think it's probably pretty normal and "healthy" (HAHA)
for us to need a break from testing, docs etc etc etc.  Sounds like you have been through quite a bit.  

So we take a break, feel "normal" for a while, and then when we are ready and feel stronger we can advocate for ourselves again as needed.

  I think that's what wears me out the most - telling my story to a new doc.  I find I end up leaving so much out - cause I'm just tired.

I forget who I have told what!  We should just make a recording so we can play it for any new docs - then we don't have to keep repeating ourselves!
Have a great weekend!
Carol

[Lulu54]

Carol,
Everyone has covered the basics with you and I agree that your decision is a good one for you.  CIS.MS should be treated.

I get so aggravated when I read of people going to their neuro and being told that since there are no new lesions, it isn't MS.  The whole point of jabbing ourselves with a DMD is to halt the progression.  A stable MRI doesn't mean you don't have MS.

Anyway, feel good about making your decision and not being distracted.

be well, Lulu

[drsdonthelp]

I don't have much to offer here, but I wanted to let you know that i support your decision as far as taking a break from tests..
I was at that point when I went through, TEE, Carotid doppler, wearing a heart monitor for two days and then one week later had to repeat it. I have been through MRI's, CT's EMGS, EEG's, 6 hr. glucose test , bloodwork every three months, cognitive tests at my physcologist's.
I feel I have been bounced around to so many different drs. that i finally said to my GP, please I can't take it anymore, I dont care whats wrong with me I will deal with it, I do not want to see another dr, especially another neuro , so he could tell me I have anxiety.
I totally can relate!

I guess the only reason why I am finally going to get back on the neuro search, is because of my endocrinologist. He suggested it.
Good luck to you,
pam

[wiggles94]

Thanks for your comment.  I wondered if the doppler would show the SSS.

Good luck with your tysabri vacation!
Carol

[Guitar_grrrl]

The carotid doppler will show subclavian steal, and is WAY cheaper than MRA.

Like you, my 2nd MS neuro says no, while my local neuro says yes.  I'm on Tysabri, but will be taking a vacation from it in January for a few months.  I, too, am sticking with my old guy, though the MS neuro does want to follow up with me.

Best of luck!

[wiggles94]

Thanks Shell and I agree with all you say.

I appreciated what the new neuro was doing for me - but I just got tired of this whole process, and the thought of having to travel if I stayed with him.

So to me it makes sense to keep the SSS in mind and I will discuss this idea with my local neuro or GP when I see them again. I think the carotid doppler study makes more sense to me.  But for now I am feeling pretty good.  And need a break from all of this.

Thanks for wading through my post!
Carol

[sllowe]

wiggles,

Hey Wiggles. I'm glad you are at peace w/this decision. Relief definitely rolls through your words here.  If your treating neuro is def. sure then I'm sure he'll be relieved too.

Point I want to elaborate on a little is that you can have lesions suspicious of MS,  and an attack of symptoms similiar to MS and then a  2nd attack of symptoms and in the end MS may not be the cause.

I say this because there are many, many mimics to be ruled out thoroughly one of them being the long shot this 2nd doc was looking into. Sounds like his gut is leaning away from it too - or he may not have let you off the hook so easily, lol But. that being said, had this doc not exhausted all possible mimics he/she would not be doing a thorough job on your behalf.  

Good for you Wiggles, hoping the Rebif serves your MS well - seems to be doing mine well.

-Shell

[wiggles94]

Thanks for your response Bob.  Once I posted it I realized it was WAY TOO LONG!  So I appreciate you reading it!
Glad to see you back on.
Carol

[COBOB]

If you have two periventricular lesions and one attack you need nothing else.  That is enough to call CIS.  If you have a second attack, That is MS.  You need nothing else,  At least that is how I read it,  The whole idea of DMDs is to prevent lesions and attacks.  In about 30%, it is said that DMD reduce or stabilize lesion load.  Why then would you stop doing something that is working?

I have like 5 visible lesions, ON and then TN 4 months later.  That meets the criteria for RRMS.  My Neuro agreed that given the damage to my visual system, better to treat and try and prevent ON on the left side,  We can't pick what demyelinates, so the best course is to try and prevent it and use IVSM quickly if something starts.

Sounds like whoever told you that has their own ideas.  Then again, I'm not a doctor and may have missed something.

Bob