The Easy Button

[addicted2harleys]

For anyone who remembers my climb up this big bad mountain, I see a neuro who specializes in strokes.  In the past three years I have seen him three times.  During my last flare (June, 2010) I was left to rely on the ER for my new symptoms and for SoluMedrol treatment.  That flare was a nightmare.

Anyways, I think I have headed into another flare so I called my neuro to get in.  Earliest I could get in was the end of April.  I told his nurse what was going on and she didn't respond...just got silence.  Then she asked if i still wanted the April appointment.  I had thought that since I am moving out of state in June-July that I should just tough it out with this neuro until I move, since I would be getting a new one anyway.  After getting off the phone with the nurse I just got more frustrated and more frustrated.  I decided I wasn't going to wait.  I have Medicare now so maybe it will be easier to get a new neuro.  

Well, press that easy button!  The second neuro I called made me feel so at ease.  And I can get in next week.  Is this how it is suppose to be?   I don't know why I waited so long to do this.

So, I am gonna go to my pcp on Monday or Tuesday and get the orders to have new MRI's done with MS Protocols on the 3T machine...brain, c-spine and t-spine, right?  And should I bite the bullet and get the LP redone since it has been six years and they never took my blood anyways?

Then I need the EP's.   Who does those?

Thanks for any help you can give me...

Addi

[addicted2harleys]

Hi, amo-

This is a flare I definitely want documented, too.  Maybe subconsciencely I knew that.  I believe this flare being documented would qualify me for a clinical diagnosis or something like that.  

So, thank you for the encouragement. :) and the advise with the LP.  

Medicare= I believe I have the advantage script plan.  Some of my scripts are free and some cost $1.10 a piece.  I also have MediCal as secondary insurance.   I don't pay anything for my doc visits or tests.  Is that what you meant?

Addi

[AMO]

dear addi,

i am happy youu decided to not wait... when you have not had your dx''d it is i mportant to   be seen   when you are not feel well to have not documented.
Then come summer when you  move,, mybe even this new neuro     may   nnknow someone in youur new area too see.

as far as an lp, a talk with this doctor about it will be good, then goo from there.
i never had e.p. test so don't know about them.

i do have a question abouut your medicare...did you get some supplement (medigap or advantage) ?
be  sureto let us know how it went.   but till thenn take care of yourself.
amo

[addicted2harleys]

Hey there, Jess-

I would be more than willing to sit and wait like you describe if I knew that my neuro was one who viewed me as a person instead of a file number.  I haven't found that yet but I am sure glad you have.  

Do you take all six monkeys when you go?  Wow, if you do! I know I couldn't do that!  I love to read so I would just take a book with me or my iPad to play with while I waited.  

Thanks for the encouragement and I hope for the same for you in the upcoming week!

Keep me posted on your end as well!
Addi

[lovemy6monkeys]

Addi,

I'll be thinking of you next week! I hope your appointment goes well, and they can stop this latest flare before it progresses!

One reason I'm willing to put up with 2-3 hour waits at appointments with my neuro is because he wants to see you if you ever have a problem, and they squeeze you into that days schedule. (and, I have to keep reminding myself of this as I'm sitting in the exam room for hours trying to keep my little ones entertained LOL)

Let us know how everything goes next week!!
~Jess

[addicted2harleys]

Samana- I know you are in a good place right now in your care.  But, I also know that you fought for it.  I am very happy for you....brag away!  :) And, yes, I may be a teensy weensy envious.  Lol.  I agree with the paperwork remark for an easy transition.  I have thought of this and maybe fear a little of not having all my ducks in a row when I move.  That is what I am trying to accomplish before I move.  I hope I am going about it in a good way.  Thanks!

Bob- yet again, thanks so much!  You always give me the answers that I need and I sincerely am grateful.  :)

Alex- I am really sorry that you have to live without the proper care from a neuro.  I in in that boat, too, just that I am in a lake where you are in the ocean.  I have to travel to get neuro care.  This new one is still 1 1/2 hours away.  I am glad you finally got some relief for your spasms.

Red- I think I resisted because I didn't want to start searching for ANOTHER neuro.  I think this makes number seven.  I don't want to be viewed as a dr. shopper or something like that.  But, I do hope this new one will look at my case objectively, as you said.  And, yes, Medicare sure did make the door easier to pass through. :)

I am really happy that you finally got the right neuro care.  I know you struggled with that back before I left the forum for a bit.  I am thankful for the MRI's finally getting done again, and with the right protocols which have never been done.  I hope they lead to some answers for me, no matter what that answer may be.  Thanks for the happy dance!!  

Candy- thank you for the support. :) I think I will wait for the LP.  I think the only reason I was looking at getting it done was because on my last neuro visit my neuro had written that we need to do a full round of testing, which included the LP.  So it was logged into my head that it was something I needed to proceed with.  Thanks again...I will wait on the LP.

Thanks everyone for the support, experiences and advise/opinion.  It helps me keep on the right path!

Addi

[candy158]

Hi Addi, I too am happy that you made the call and got in easily.  I agree too about the \mri's, but I had the LP and they said that the result was inconclusive.  Then I was told by 2 other neuro's that they don't really need the LP........... so, my suggestion would be, wait until it is your last resort then do it if they still want to.  

Keep us posted on your appt. and good luck to you,

You are a special lady,

*HUGS*
Candy

[RedFlame]

Hi Addi!!  I am just thrilled for you that you already have an appoinment.  The nurse at your old neurologist office was cruel when she failed to give you a response.  Seriously, it was as if you didn't exist.  That is not how a doctors office is run.

About this new appoinment:  yes, it can be that easy as far as getting an appoinment.  Perhaps you waited that long to try because you were already demoralized and exhausted by all of this.  The important thing is that you did it.  This will be someone who can look at your case objectively---I hope.  

Medicare opens allot of doors for you.  You don't need a referral to specialists anymore.  

As far as comparison:  my current 'general neuro' sees me every 6 weeks.  She handles all my MS drugs, neurontin, baclofen pain meds etc.  She also calls me back herself when i have called.  I really like her.  I saw the MS specialist in September and will see her again next month.

My EEP's I think were done by techs that had some education of some kind, maybe the kind Bob talked about.

I am soooooooooooo happy that you will have the 3T with MS protocol etc.  This is wonderful Addi.  

doin the happy dance
Red

[HVAC]

I have called mine's secretary twice since November and she said she would call me back and it never happened. My other MS Specialist was worse. You did not even talk to a person just a machine. We have as many MS Specialists in this area as you can count on one hand with Duke, UNC and one of the largest private Neurology Practices in the country. The patient ratio per Doctor is about 2,000 to 1. I have never had an appointment lasting more than 15 minutes with any Neurologist. Last time he did not even do any Neurological exam and I only go in every six months. I pay $200 out of pocket on top of my insurance. I have thought of dropping the Neurologists all together but I know that would be a bad idea because if I needed one and I am not established it is 8 months to a year to get in.

My PCP did finally give me pills for the Spasms. She wants the Neurologist to deal with it. She does not understand when I keep coming back to her. She just does not believe me when I say I can't get in.

Alex

[COBOB]

EPs are done by neurologists and electrophysiologists.

Bob

[Sumanadevii]

Now before I brag, remember that it was nine years of hell before finding this specialist.  I can call my ms specialist and she will either call me within a few hours or have an appointment made for me to come in....Those fit in appointments are usually at the crack of dawn the next day but she NEVER says no.  I know I am so lucky to have her in my life and feel secure in her care.  I wish everyone on this board had one like her.

I wish you the best with your new neuro.  Too bad after finding him/her you will be moving.  But maybe she will get the paperwork together making for an easier transition.

[addicted2harleys]

Lol, D!  We have one here, too.  We press it quite a bit around here but it never seems to help.  That must be how it works...your button works for me so who's button is mine working for??  :). Makes sense on the LP.  I knew that!  Lol. I tink I am just trying to maybe get this all in order before the move.  One step at a time.  Wishing for a positive MRI...isn't that sad?  But, yeah...

Alex-wow, I thought mine was so far booked out.  Yours has mine beat for sure.  Mine doesn't have a PA.  He does have interns but I don't think they see anyone unless he is there cause he sees them after the intern for like 2.2 seconds.  I can't even reach the janitor at mine. :(

Can't your pcp help you with your spasms?  No wonder you are feeling the depression right now, girl!

Addi

[HVAC]

Glad you got in so quickly. My MS Specialist is so booked I will not even see him in 2011. I get the PA. I made an appointment in August for February and he had to cancel. I have been going through the diaphragm spasms since November and have had to stick it out.

Alex

[Zacksmomi]

Sweet...I knew my son pressing that darn easy button would finally help someone.  
I am so glad to hear you decided to make that call. I don't know if I would go for the LP until after the MRI results r in.  
I personally would not put myself through that unless the MRIs don't come up singing. So is it right to say...I hope u have a positive MRI?

I've never had an EP so I can't help u there.
Best wishes...I will try to write u back tomorrow

D