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Follow up appointment with MS doctor
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Follow up appointment with MS doctor

What is a follow up appointment with the MS doctor like when you have a diagnosis?  

I am guessing we will talk about my medications.  Are there more tests I might need?  I hope not.  

My appointment is April 9th and I am a little nervous wondering what to expect.  I had to find a neurlogist closer to home to monitor me.  

That appointment is in May.  The MS clinic will see me twice a year.  I am to see the neurologist twice a year.  

I hope life seems a little more normal after I get through these next two appointments.


LA
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413836_tn?1206468712
Hi La:

I can tell you how I use my follow up appt after Dx.

Yes we did talk about the copaxone,
And since I did so much studing up before that appt.
I was able to make alot of connections, about stuff that
had been happening to me for several years but never knew
that is was realated to MS.
That is why my symtoms (symptoms) list came in so late in the game, I
was able to go over alot of this with the neuro, and he discussed
all the issues and what could be causing them.

Then from that list, he said it was apperant that I may have TN
and ON. and want to see me asap if it starts  up.
also sent me to an opthomologist, who agrees with the ON

Then sent me to a Urologist, due to the bladder symtoms (symptoms)
and have had one test there so far, showing bladder wont empty
all the way, so have to go back for more test there.

So My neuro gets all the reports from the other specialist to keep
track of the MS related stuff above.

so as you can see that follow up appt can be put to really great use
if you have a problems left that have not been talked about or resolved.

Hope this helps.             Gollie

The previous appts with him were all a blurr with all the testing, I believe
he wanted to see what I had going on, before I could ask to many questions.lol

so it worked out pretty good that way.

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382218_tn?1341185087
Good question.  My first follow up is April 22 and I'm not sure what to expect.
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233622_tn?1279338505
I have confirmed ON and TN.  Actually, there was a question about the TN because I had never agreed to take any medications to control it before.  

It has been bad and I have used Vicoden to try and deal with the pain.  If you have TN you will know that pain meds do not do much for TN.  I started on the anti sezuire medicaiton and what a difference!  I still have some break through pain.  Maybe my medication needs to be adjusted some.

You bring up a great point. Having ONE doctor helping you pull things together and get an answer would be great!!  That is just what I need.  

So, maybe more testing for other problems. But it sounds like once the MS dx is made then you can more on to other things?

LA
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413836_tn?1206468712
La:

Yes absolutley.  had I not discussed and brought my symtoms (symptoms) list

with me, I may not have got sent to have my eyes a bladder checked.

as those are MS realated things in my case. yes I like the fact that

he will be getting reports from these specialist (lol also will I on the side)

but he will have a much better picture, of anything else that my MS is

causing. And have a much better picture as a whole of my MS progression.

So any new symptoms you might have since your last visit or worsening
and any questions

about your meds, and he or she will let you know if they want more tests.

I did not end up having to go for an LP.  and He is going to wait awhile

before doing another MRI, He wants me on the Copaxone for awhile first.

If I do get another flare up he will do another MRI pronto.

I have checked around and Some neuros, have their own little time lines and

reasons for when they order new MRIs they all seem to vary abit.

So just write down anything you want to ask.

                       Good luck Gollie
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233622_tn?1279338505
I took my time line with me the first time but did not take it into the office. I was such a wreck!

The two neuros I saw before the MS specialist didn't want to see a time line.  However, the MS doctor was actually asking me for a time line!!  I was so flustered. I didn't remember I actually had it with me until I left the office. In the end it did not matter.  I was dx'd.

When I got home I updated my time line and sent it to my MS doctor.  I explained in a note that the other doctors didn't want to see it so I didn't take it to the appointment with me.  

I realized during that appointment she was trying to establish seperate flares.  I must have given her enough information.  But my time line has dates and a lot more detail.  

Ok, about the bladder issue, do you have pain in the area of your bladder?  I am having pain in that area.  I had a hysterectomy so I know that is not the problem.  I also have some trouble with retention.  Had a bladder infection this fall. I am wondering if I have another one started.  

I do have to have my eyes checked every 3 months now.  I used to hate having my eyes dialted.  Guess now I'll just have to get used to it. They tell me I have optic nerve pallar.  :(

LA
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413836_tn?1206468712
Hi La

Yes sometimes i do have  a bit of spastic pain there especially if I
have had to hold my bladder to long. which in my case isnt long at all.
I also wake up all night having to go.
I go every couple hours durning the day.  had I not told my Nero about
this he would not have sent me to the urologist.
The urologist did a test that showes the bladder will not empty all the way,
so I have to have 2 more test done next month.
He says he sees this alot in His MS patients, and will know more after
the other 2 tests.

In your case, I would definitely write down anything about any type of
bladder problems weather it be going non stop all night long or all day long
or alittle leak here or there. ect..  
That needs to be checked.

if you have any other symtoms (symptoms) that are bothersome or ones you are
very concerned about, start with those. sometimes it is too much
all at once for a neuro to go threw. If you still have some symtoms (symptoms)
left that you want to go over, you could request to make another
follow up appointment, sooner to discuss the rest. It should be an
open option for any patient. It just depends on what you are comfortable
approching you doctor with.

I actually almost did not write the bladder problem down, on mine and
put it in there at the last minute. I had no clue It was a common MS
related thing. Its a good thing I put it in there. I was so concerend about
the pain stuff, I thought those were more important.  Thank goodness
I had been reading this site before i made that list lol.  

I was lucky my neur looked at my whole time line and symptoms list.
went over them one by one with me.          
                                                                            Gollie
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413836_tn?1206468712
http://www.mssociety.ca/en/pdf/bladder.pdf


This is a great explanation of MS related bladder problems
hope this helps.

                      Gollie
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233622_tn?1279338505
Are the bladder tests painful?  
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413836_tn?1206468712
The first bladder test was not painful. no
it was just alittle insturment they ran over top
of the abdomen bladder area. like ultra sound.
you empty bladder first. then they can see
or measure what is left in there.

the next 2 will be a cystoscopy
and  a urodynamics. I am not sure it it has
any discomfort with It.  I will have these on
april 10 and 11  I will let you know if it is
painful.
I hope not.             Gollie
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233622_tn?1279338505
Ok, I will be waiting to hear.
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195469_tn?1388326488
Bladder problems are very common with MS.  So is the simple fact that we carry children, as I was told by the Urologist.

To be blunt, I cannot tell when I am actively peeing, if I am actually going unless I "listen."  When I first started having MS attacks early in my disease, I could not empty my bladder fully and was getting recurrent infections.  Something that sent the MS into high gear.  

I was sent to a Urologist and told to empty my bladder as much as i could and come back in the examing room and be catherized.  They found that my bladder still had urine in it and pronouced that I had "Neurogenic Bladder."  The Uro, told me that this was probably due to the lesion in my spinal cord.  Especially since I could not "feel" when I was peeing.

I have full bladder and kidney exams through ultrasound every year.  For awhile when I was fist diagnosed with MS over a decade ago, I had to occasionally catherize myself, so I was sure that my bladder was totally empty.  I sometimes now get pain in my bladder area, when I hold it too long and get a spasm in my urthrea when I start to go and when I am releasing that last bit of urine.  This I was told, is very common for someone with MS. I still to this day, will think that I am finished peeing and go to stand up and urine is running down my leg.  I had to wear bladder protection pads for a long time.  I think it has to do with MS, having large babies AND having a hysterectomy when I was 27.  Now that I am 54 years old, I think some of it stems from just getting older.

Heather
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413836_tn?1206468712
Wow Girl:

You have been threw it all, I dont know how on
earth you have coped so long!! With all this stuff.

Did you have the cystoscopy and urodynamics?
If so, was it painful?

Also, Does this bladder problem, slow down at some
point, or is it on and off, during a flare. or worsen when
in a MS flare?

Did they use any type of medications (besides the
antibioted for bladder infections)?

Anything you can add would be great.

Heather, I hope you are doing well, As well as can be!!! :-)

                                Gollie
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285045_tn?1253644928
Hi :)
just to chime in...
I had both tests done for my bladder. The cystoscopy is virtually
painless. The only bad part for me was twisting my neck so I could
see the screen with my bladder insides on it!  
The urodynamics test wasn't bad either. It was just a little humiliating having
all sorts of little probes everywhere.  You just have to let the nurse know when you feel full and then when you feel really full!  Then pee in a little potty with wires connected.

I have a neurogenic bladder and hold urine almost constantly now, but
right now I am un- diagnosed.  UTIs where my first eye opener for my doctors.
So...nothing to worry about with those tests :)
Easy Breazy!  
Cyndi
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413836_tn?1206468712
Hi Cyndi:

Whew, thank you so much for that answer,
I was abit apprehensive about any pain.

I can see where the uro might get abit humiliating.
not looking forward to that as I have a male Doc
and he is pretty cute to boot. humm maybe I will
get lucky and his female assistance can do it.

lol oh well what ya gonna dooooo lol?  

Thanks Again Cyndi                          Gollie
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