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335728 tn?1331414412

Well...back to the neuro on Monday!

Wow...seems like a LONG time since I last had to face a Neurologist.  Some here know the battle I have been dealing with since 2006 and here it is almost 2010!!!  Can you believe it???!!!

I have been keeping track of my symptoms since I last saw Dr. G. in the form of a time line.  I included the trouble I had after the last steroid infusion and the intermittent ice pick pain and horrible, increasing tingling that has been affecting me for the last month or so.  I don't know if it is due to the hotter weather or what but I really don't expect too much from my appointment.  I will also explain to him about the fatigue that I have been struggling with for months now.  It has been very debilitating and I have changed the way I take my meds but it hasn't made a bit of difference.  This was suggested by my gp and we all know how helpful she goes out of her way to NOT be!

Other than that...what can I say?  I am betting that he will examine me and tell me that there are no changes and I will go on my merry way.  He will not think that an MRI will be warranted and therefore will not order one and he probably won't bother to check my Tegretol level...why do it now?  I haven't had my Tegretol level checked in years and when I started on it I was told that it should be checked regularly via a blood test...shows how much the doctors stick to the rules eh?

My appointment is at noon and my hubby is going with me of course.  I will let you know the results when I get back but I don't expect that I will be getting anything like DMD's...they are for people with MS ya know?  haha  I am feeling depressed I think though...I don't want to do much of anything around the house and I have gained more weight and I know what that is from...EATING TOO MUCH JUNK!  Perhaps he will increase my Citalopram but then again he might leave that for someone else to deal with...don't want too much on any Neurologists plate at one time now do we?  (Ever the cynic eh?)  

Wish me luck and I will let you know what happens!

Lots of Hugs,
Rena
15 Responses
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649926 tn?1297657780
Just wanted to wish you good luck with your visit tomorrow. It is sooo hard to keep up the positive thoughts that this could be a good visit.

If you don't get answers and compassion you should let him know how dissappointend you are and ask if he could include a second opinion to go over your case together. That way he will feel like he is on the spot but at the same time has a chance to save is ever loving ego if he gets the right doctor.

We will be thinking of you and hope neuro-man has had his wheaties for breakfast.

Good luck and keep us posted

Hugs,
Erin :)
Helpful - 0
335728 tn?1331414412
Thanks so much for the help with my timeline...

I changed it up a bit, I put my current issues at the beginning in point form and then explained after that what symptoms I am dealing with regarding these issues.  Then I put my current meds and then I explained what is new in my life, i.e. fatigue, increase in tingling and numbness.
I followed then with my timeline from the last time I saw him including what the results were from my last steroid infusion.
Then I typed up my own questions and I will throw in a copy of that for my file as well.

I am going to ask the receptionist about my file and why I haven't received a copy of the report sent to my gp...I am not leaving without a copy of that.

Then I am going to my Mom's to check out her new bed!  She bought one of those adjustable beds and she loves it so far.  I got her old bed and it is a pillow top and I just about need a set of steps to get into the thing!  hehe  It is so high but soooo comfy and I love it!

Anyway, thanks again to all that are backing me up here and I will let you know how things go!

Lots of Hugs,
Rena
Helpful - 0
335728 tn?1331414412
Ha ha ha...I doubt that he moonlights in Ohio since I am in Alberta but seems like there are a lot of Neuro's out there that need to have a time out to get an education before they spout their doublespeak right?  This is my 4th Neuro as well and I was warned by his nurse not to try to get in with anyone else because it is a waste of the doctor's time when they come to the same conclusion...BAH!!!  If she tries to give me a lecture on that again I will be leaving her presence in a hurry and possibly finding a lawyer.  They are supposed to be providing me with a service, not the other way around right?

db1...I never did receive a copy of the report from my first visit and I don't know why.  I called about a month after my last visit and was told it would be looked into but when I called again in another month I was told the same thing.  I will talk to Melissa about it on Monday.

Rena
Helpful - 0
382218 tn?1341181487
Just curious...did this neuro include this discussion that you had with him re: DMD's and his rationale not to start you on anything, in his report of your first visit?
Helpful - 0
751951 tn?1406632863
You wrote:

"Regarding the DMDs...it depends on whether or not my disease has progressed because he already said in the past that he would not use them unless my disease progresses quite a bit...who know what that means?"

It means he's an idiot.  It means he's trying to have it both ways, IMHO.  He says it won't help because you are SPMS rather than RRMS, then he says that he won't consider it without more progression?  Maybe it's me, but that sounds like doublespeak to me.  Are you sure he doesn't moonlight in Central Ohio?

You, like the rest of this family, will remain in our prayers.  I'll pray for the neuros, too, but I'll need to really ask for grace to have the right attitude toward them.  I go to see my latest (#4) for the second time on Monday, too.

Peace.
Helpful - 0
233622 tn?1279334905
I go back to mine on Monday also and will have another MRI.  Have not had one for over a year.

LA
Helpful - 0
335728 tn?1331414412
Well...where to begin???  I guess I will have to wait and see if he thinks that there has been any progression of my disease since the last time I saw him.  I don't think that I have lost my fight...I think depression is a problem right now.  I will ask him about increasing my Citalopram for that.

Regarding the DMDs...it depends on whether or not my disease has progressed because he already said in the past that he would not use them unless my disease progresses quite a bit...who know what that means?  I explained to him that I would be covered under hubby's health insurance for the DMD's but he didn't feel that I needed them.  I don't know if the increased tingling that is driving me nuts or the sudden onset of the excrutiating nerve pain in my feet and now my shin will make much difference. The fatigue I have been having every few days is something that this dr. knows nothing about so maybe he will have some insight and it started before I gained this recent weight.

I will try to keep my chin up with this doc since we really don't know each other very well yet...just feel like I have been kicked when I was down too many times and can't help but feel a little bruised.

I don't know about those studies at the U of A...don't know much about what is involved but will ask him about it...who knows?

I appreciate the support you have all shown and it is good to know that I have you all on my side!  DV...are the Northern Lights putting on a good show up there lately?  We haven't seen them at all this year yet!  I will however wrap the ones you see around me and know that you are thinking on me on Monday ok?

Lots of Hugs,
Rena
Helpful - 0
667078 tn?1316000935
Rena,
  I would feel really frustrated if I were you. Sorry you have to go through this.

Alex
Helpful - 0
382218 tn?1341181487
ps:  there are a number of MS studies underway at the U of A clinic at any given time.  Ask him if they are doing any for SPMS, either drug trials or anything else.  If so, would you qualify and where do you sign up?!  
Helpful - 0
382218 tn?1341181487
I really honestly think you can have more of an influence over the outcome of this visit than you think you can.

Be prepared: bring Lulu's list with you.  If he is still reluctant about DMDs, ask him for the literature to support his view, in a nice way, an inquisitive way, not an "I'm going to take this info and sue your a** way (never mind that, we Canadians don't sue our docs, do we?  haha).  

Try to negotiate: ask him if he will try you on one of those DMD's for a year...then re-assess (which is what they do anyway really).  Ask him if it's a cost issue; maybe you don't qualify for the provincial MS drug program; I"m not positive, but I think it may only cover drugs for RRMS.  If so, and if you have drug coverage through your spouse's work or you're on the Blue Cross non-group plan, let him know.  You'll have to pay more than me, but only as much as your co-pay, not the full amount.  I've never ever heard of an exclusion due to pre-existing condition.  I know for sure this is not a factor in the non-group plan, in fact, I had to go on it in order to facilitate my coverage through the govt program.  Premiums are low and all they need is your name, address, and AHC #.  Perhaps if he knows this, he'll be more likely to 'experiment' with you.  He may not want to financially burden you when he is not overly optimistic about the effectiveness of these meds at your stage of MS.  

Re: tegretol levels, don't ask him if he thinks you should be tested.  Tell him you want to be tested for this as you've been on it some time and would feel more comfortable having it checked.  What is it, a blood test?  It's nothing for him to write up a requisition for that.

Same thing re: the fatigue: if he doesn't think meds for this symptom are a good idea, ask him to explain why.  He might be right about that.  As you are on several meds that all probably have fatigue as a side effect, he may need to be more confidant that it is truly MS fatigue/lassitude.  If it's because of the other meds, or mostly because of the other meds, then adding another med into the mix may not be a good idea.  If you need to come off them in order to find this out...well, this may not be tolerable to you given your level of pain.  This is a complicated issue with no easy answers.  If he has noticed you have gained weight, he may comment that this may be contributing to your fatigue, and he could be right.

Not trying to be unsupportive to you, in fact, just the opposite.  Don't look at the appt as a battle to fight, or worse, a battle you've already lost.  Not all neuros are the same, and you are just getting to know this one.  Try to look at this as a fresh start, for him and for you, meaning, just as you hope he approaches you differently, try as well yourself to adopt a different approach and see if this might bring about a different outcome.

All you can do is try, and in the end, whatever leads to the best possible care for you is worth at least trying for. (sorry, awkward sentence, does that make sense?)

I will be sending you good vibes from the land of the northern lights!

Helpful - 0
231441 tn?1333892766
Hi,

Hope things go better than you're expecting.
It has been a long hard and ongoing battle.

Sally
Helpful - 0
572651 tn?1530999357
Rena dear, I sure hope when you awake Monday morning you will have some fire left in you.  If he wants to call it SPMS, then make him put it on your record so you can get some assistance at least, if they won't give you DMD's.

But I really feel strongly that you should ask for a DMD, like Shell says.

FROM THE NMSS website - notice they SPMS is listed for treatment with these drugs....

"The following agents can reduce disease activity and disease progression for many individuals with relapsing forms of MS, including those with secondary progressive disease who continue to have relapses.

FDA-Approved Disease-Modifying Agents
Avonex (interferon beta-1a)
Betaseron (interferon beta-1b)
Copaxone (glatiramer acetate)
Novantrone (mitoxantrone)
Rebif (interferon beta-1a)
Tysabri (natalizumab) "


You recognize all those drugs - pick one and tell this neuro you want to start now to slow your disease progression.  Enough is enough with leaving you hanging out there.

I'll be waiting with everyone else to hear your followup from your appt.

lots of love
Lulu


Helpful - 0
335728 tn?1331414412
Hey ladies...well this is the dr. that is in the same office and doublevision's doc and I have only seen him once.  I don't know what to expect but I don't really expect anything much different than last time.  

Wobbly honey...I am a fighter but I think we all get to the point of not bothering because it doesn't get us anywhere does it.  Persistence is about all we have and while I haven't lost that I don't see that bucking the system really got me anywhere in the end so I am not going to waste my little bit of energy that I have.

Shell...I don't think I am even going to bring up the DMD's this time...he told me last time that he feels I have Secondary Progressive MS and he doesn't think I need the DMD's.  Since the only thing that has changed is the increase in fatigue and the tingling I can't see him even letting DMD's cross his mind.  I am soooo tired of arguing the facts that I have gleaned in the last few years against the Neurologists that think they are Gods and think they know how I feel that I don't see myself getting my back up this time.  The answer machine has run out of gas this time and until I get a tuneup...well time will tell.

Thank you both for your support and I know you are there if I need you and that is about all I need right now...it means the world to me that you took the time to write a response to me and I will be thinking of you both while in my appointment.  Maybe I will blurt out, "Wobbly got answers, Why can't I?"  hehe

Lots of hugs,
Rena
Helpful - 0
198419 tn?1360242356
Oh, you've just got this down pat don't you? ha/ha...

You know I'm with you all the way honey -- sure just wish you were close enough to join you on that visit. I'd tell him a thing or two!

Look em' dead in the eye after you explain the fatigue. You then ask him straight up, "Why is it I've not been given medicine for MS yet?" Don't you think it's time? Tell him you've had enough of this.

Wishing you a smooth visit honey.  I'll say prayers,
xoxox
Shell

Helpful - 0
293157 tn?1285873439
well, it's about time you get to see a Neurologist, is this the same one as last time though?  I can't remember?  We can hope you get some answers, you deserve some answers.  It's been so long and if I can get answers, you can too.... so that's how it has to be...hehehe

If only it worked that way.... I hate to see you depressed, you seem like the type of person that would fight anything...but depression as I know and many of us know here...can be debilitating??  So hang in there honey...your not alone here.  I'm glad you let us know this is happening now and please take your timeline with you...

I wish I could be there with you...so many times you have said that too me... :)

glad your hubby is going, let us know how it goes and remember we are there for you...and with you..

take care
wobbly
dx
Helpful - 0
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