New neuro vs old neuro

[nosrepmodnar]

I moved out west to a dry warm climate from the humid frigid northeast.
went to the neuro here so that I could get a script and continue the meds when my insurance changes.

So here is the deal. the neuro i used to go to and have been going to since 2001 was not a MS specialist, the only real specialist in the area was not taking patients at the time and the one i ended up with was an opthoneurologist so it fit with the optic neuritis and well he worked with her, so maybe he would consult.
This is not to say he didnt know about MS, we discussed therapies and medications and all that good stuff, but we just seemed to do the same squeeze, hold, push, walk ever time and nothing else was really ever said. New drugs were suggested when avonex did nothing and i had a lot of brain activity that year, but then we just coasted on rebif, even when i would comment that my right side was getting weaker,, or that my walking worstened, or that i just all of a sudden had tinnitus.
I finally went in and said, im going onto tecfidera, he said okay. We were going to wait until it had been on the market a year, but i decided i didnt want to wait because i thought rebif was failing me.

Anywhoo, i get out here and they have a center for brain research and they take my insurance. You bet your bottom that I called for an appointment. Next year... okay i guess... SO i fill out the new patient info with her, and then they go back in to mark me in for the appointment, hey a cancellation on friday. Yes, i will be there.

New doctor is nice, goes over my MRIs for the last 4 years which i have on dvd and comments on the incredible inaccuracy of them and that there is no way to compare from MRI to MRI since they were so far off on the brain slices that you werent looking at the same pieces of brain. GREAT!
She asked why the doctor didn't fdo this or that or why i didnt ask for the other thing.
I never really thought to question him, i mention bladde issues and he poopoo'd it, must be nothing to worry about.
I mentioned the weakness, and yah okay, guess it is nothing too.


My biggest grief is the tinnitus and she says it is not a normal MS symptom and there is no proof rebif causes it (that is what i figured caused it)
But then she points out a legion right in the ocular region that probably is causing it... dagnabbit.
Could steroids have stopped it or helped? maybe, but now we will never know.

Can't walk well? Did I ever have a thoraxic spine MRI. a whaaaaaa? I guess that would be a no. apparently she is expecting to find legions there since i am getting that done now.

Well by the end of the appointment the neuro was pretty mad, feels i was mistreated and am way worse off than i needed to be (I do not think i am that bad really, but what do i know)

I mean I know there is nothing I can do to change the past, but now I am ticked at myself, I should have drove the 3 hours to the specialists in the neighboring city. I should have pushed when the MS specialist (she left to go work in that city) came back to get into her schedule.

Just needed to rant and get that off my chest, i do not have people to talk to here as my family is still back east.
Really stinks that my quality of life is worse than it could be
I was perfectly happy with my station in life until being made aware of how it should be, guess that is how it all works out in the end.

if you made it this far thanks for lending your ear, if not :P

[zilphia01]

makes me wonder

I wonder if I am not being enough of an advocate? I have a neuro, not an MS specialist..... and I get the push pull squeeze hold every time... I get the blank stare at the new concerns I have, and he usually prescribes a new pill (or not)..... asks me what dmd I want to try.. seriously how the H*** should I know??????

hmmm

[msgijo]

Sorry to say this, but I know the feeling .

Optic neuritis was my presenting symptom. Ophthalmologist told me that I had MS and referred me to a neuro. I assumed that he was a MS specialist, and even tho the 'fit' was never there I just thought that was that okay because he knew his stuff (found out years later that he was a general neuro who treated MS )... I DID attempt to change neuros, but either they were not taking new patients or needed referral.
BTW this neuro had the same office visit routine your old one did .

Finally last year I had had enough, and checked into a MS clinic about 40 miles away - original neuro was only 20 miles away. They would see me, but I needed my dr.'s notes and copy of latest MRI. I had the disc but how to get the notes dating back to dx? Well I went in to see original neuro last December asking about Lemtrada - it had just been approved by FDA - and he didn't know what I was talking about. BUT he suggested that maybe I would like a referral to the MS clinic to discuss that with them. YES! I was in . First available appointment was in January of this year.

Whatever notes he sent must have been fairly skimpy, and I don't remember things well any more, but I LOVE the MS Clinic. They have done more for me there this year than original neuro did for me in the 20 years that I saw him .

Just had a visit last week - had first ever JCV test ordered (which was one of my goals for the visit) and got a rx for the headaches I have been having (she said migraines). She even paid attention to my complaint about hair loss (it is coming out in clumps lately) and suggested that I start on some supplements while she checked some things out. And I had held off on going there for several years because of the drive and for over a year because the specialist is "only a PA" .

If I had made the effort to go to the clinic in the beginning what would have been different? Would my eyesight have been better today? Would the spacity(sp) have been treated earlier (original neuro finally wrote rx for me in the Dec visit after I had complained about it for over a dozen years)? Would I have gotten a cognitive function baseline when it would have been useful instead of waiting until I was impaired to have one done?

Like you, I am mad with myself for not pushing harder earlier but I just didn't know - not until I saw here on MSWorld people talking about the things that their neuros did. Even then I thought that it was just because of where they lived that they had better care, and that I was just screwed because of where I live.
Yes it is water under the bridge at this point and nothing can be done about it except to encourage others to make the extra effort to see the specialist.

[nosrepmodnar]

Glad I am not alone in this.

zilphia01 , take control, please.
If you have any concerns that this doctor is not giving you 100% find another.

Msgjio, The new neuro said I shouldnt waste too much effort on the notes since they are probably useless, yikes. I will cal and see about getting them transferred anyways.

She sent me to a urologist, which I guess I could have done at any time on my own, but all I could think of was a self catheterization and it was enough to keep me away.

I have a script to go get the jc+ test done, "just cause she likes to know"

Guess we cannot upload pictures....I will put a link which probably won't be allowed, but it is a magnificent place, a brain center that is in itself a work of art.

**URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**

[msgijo]

nosrepmodnar, I am glad that we both found out that there is something better .

Msgjio, The new neuro said I shouldnt waste too much effort on the notes since they are probably useless, yikes.

Hmm, hadn't thought about the lack of info that the clinic received in that light ...

She sent me to a urologist, which I guess I could have done at any time on my own, but all I could think of was a self catheterization and it was enough to keep me away.

Well after complaining about bladder problems for several years it got bad enough that I did make an appointment (on my own) and see a urologist. Like you all I could see was self cath - which I did not want to do - but desperate times ... Anyhow, while the procedures performed where not pleasant the urologist DID take care of the problems. No self cathing !

I have a script to go get the jc+ test done, "just cause she likes to know"

I wanted to know, but she was quick to jump one further and commented that it was something good to know to help determine which treatments were available for me. Which was my 'hidden agenda' for just wanting to know .

Oh, I haven't mentioned, at the MS Clinic, for the first time ever, my MRI's were pulled up and discussed. Questions were answered that I had wondered about for years. (Oh so those are the dawson(?) fingers I have heard about? Do I have any black holes? Answer was 'here is an area we will be watching'.)

Actually the only fault I can find with the clinic is that they just don't quite get the frustration that I feel knowing that there is really nothing that can be done to stop the progression which seems to be speeding up . But that is not really their fault. At least they are trying to do all that they can.

[Teekybird]

MS Specialist!

MS Specialist (Neurologist) makes a huge difference.

Seek out the best care that you can get. Be pushy when you need to. It is your health and no one else is going to have the same value for it as you.