What to expect out of first Nuero appt

[angiew0722]

Hi all,
I am a newly diagnosed MS'er.  I had an MRI little over a month ago, ordered by my PM&R that I see for my lumbar spine (degnerative disk).  He showed me the images and said I have multiple MS lesions (it looked like a lot to me too).  My MRI report says "findings highly suggestive of moderately severe demyelinating disease, probably due to multiple sclerosis, involving multiple supratentorial and infratentorial white matter compartments..."  While my PM&R has a neuro back ground he is sending me to a neurologist.

For 2+ months I have been dealing with: horrible 24/7 headaches, fatigue like nothing i've ever experienced, buring pins and needles, optic neuritis, disconnected, grumpy, clumsy...

My question is, what do I expect out of this appointment?  More tests? Start treatment?  What advise do you all have for me?  

I really value any and all input.  THANK YOU in advance.

[angiew0722]

Actually bday was june17... Must need to review my info. Lol

[angiew0722]

The clinical trial drugs are Gilenya 50mg vs 25mg(trial dose) and copaxone as the control. I'm not too down w/ being a guinea pig but since they're established drugs I'm game. :) the infusions are going good, being done at home by a nurse. The i.v. Line being in for 5 days will be annoying but worth it. Yesterday was the 1st infusion, & the first time in months I didn't have a headache. Now to ween me off pain med... ;)  I feel like the fog is slowly lifting, it is promising and a good feeling. I feel like I have missed months of my life feeling sick and being tired.

Can't thank you all enough for your input and friendship. It's nice to talk to people who understand. XOXOXO

[Guitar_grrrl]

I'm like Kyle - 20+ years of stuff before diagnosis.  Sorry you've been hit with all this.  You've gotten some sound advise, here.  

I'm on Tysabri.  I'm luckily JC negative, and there are no side effects.  I get a once a month infusion, which leaves me free from worrying about forgetting a dose.  

[cubbiesfan918]

I did the steroid infusions my 2nd day of Dx. It was very surreal. I think it gave me the opportunity to realize I was surrounded by people who had real reasons to be sad. I hope that your trial works well and that treatment goes smoothly. Good luck Angie.

PS Is your bday the 22nd of July? Mine is the 24th :)

[kwarendorf]

They are looking at something similar for Avonex. I think in that case, it's the same dose but with fewer injections, i.e. more time between shots.

[angiew0722]

Gilenya and copaxone. Seeing if lower dose of gilenya will work just as well.

[kwarendorf]

"I had one a year ago but didn't realize what was happening."

I think that happens to a lot of us :-) For me my first relapse was 20 years before I was diagnosed.

Is the trial you are participating in for Biogen-Idec's long acting version of Avonex?

Kyle

[angiew0722]

My neurology appointment ended up taking nearly 3 hours, evoked visual, lots of blood work, I will be started on steroid infusion as soon as ins approves. Then onto a clinical trial in 30 days or so.  Not new meds, playing with dose of 1. Neurologist says its RRMS. This was not my first flare up - I had one a year ago but didn't realize what was happening.  Thanks everyone.

[HVAC]

My Primary Care Doctor first found my MS. The Neurologist did a MRI and said I had MS. I was not officially diagnosed for two more years. Neurologists often want to follow you themselves overtime. I found this very confusing.

Alex

[immisceo]

Ha! Cart before the horse, obviously.

[immisceo]

I'd say perhaps just focus on the appointment for now. Official diagnosis can be more than a little protracted, so thinking about drugs may be putting the horse before the cart a tad.

There will be time for all of that after you know where you sit in the MacDonald criteria and if this neurologist is aggressive with treatment (prescribing disease modifying drugs for CIS versus waiting for a full MacDonald-based MS diagnosis, as an example).

As stated above, the health pages are invaluable for info and tips. Welcome to the forum!

[cubbiesfan918]

Hi Angie -

I began Copaxone after 3 days of steroid infusions as I was having a postpartum flare up. I didn't research the drugs as previously stated; so my neuro told me all of the drugs one by one, listing pros and cons.

I chose my DMD because it has very little side effects. Granted, I inject myself with a small needle daily. However, I will accept this over feeling like I have the flu often. I noticed that the first month of injections my sites would feel a little sting about 5 min after injecting; however, they have all subsided.

So the pros are no side effects, no flu like symptoms. Con is daily injection. I use the Autoject so it does it for me and it's virtually thoughtless. I am 32 with a 3 month old so I needed the one that best suit my lifestyle.

I applaud you for researching and being prepared! Good luck to you and keep us posted!

Xoxox's
Cubbiesfan

[angiew0722]

Thanks everyone for your wealth of knowledge. I did go and read about the medications and have a list of questions. I have the same time line of events to give to my neuro that I took to my PMR doc with some additions from the past few weeks. Along with a list of questions.  I work in the medical field and have heard nothing but good things about the neuro I am to see from docs and other staff.  I think I'm prepared...???...

DMD - is this something you all recommend? Use? What are they like? Pros? Cons? (I'm nervous!!)

[rendean]

Hi and welcome to the forum!

The Health Pages have a lot of information regarding Neuro visits, one of these being this page:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Doctor-Visit-PREP---Be-Prepared/show/156?cid=36

There are also Health Pages on making a timeline, the doctor checking spasicity, MRI's etc. These pages are located top the right of this main posting column.

There is an index once you click on a page that will lead you  to the pages that interest you the most.

Please return with any specific questions you may have and we will do our best o answer them for you!

Glad you found us, sorry you had to go looking :(

Rendean

[Lulu54]

Hi and I wish I could say I am sorry you got this news, but it is so much better to know and get onto treatment.

What to expect?  I am guessing the neurologist will begin from scratch with the clinical exam, take your history, look at your MRI results and come up with an independent decision from what your PM&R doc  said.  

.It is very rare for anyone outside of being a neurologist to actually state that someone has MS, even when the evidence is overwhelmingly positive. The thought that you want to learn a bit about the different drugs is a good one - so you can join in the conversation as a partner for your health and not just listen to the doc.

Good luck with this next step - I hope we see you around here with your questions.  best, Laura

[Corriel]

Hi there, it might be a good idea to start researching MS disease modifying drugs. I am not sure where you live but the 4 standard ones are Avonex, Rebif, Betaseron and Copaxone. The newest one, Tecfidera may be available to you. If they have dx you, then you will need to decide if you wish to take the treatment and a lot of docs seem to leave the choice of which med to take up to the patient.

I'm glad you found us.There is a wealth of knowledge and info here. :-)

I was dx April 4, 2013 and will be starting Rebif on June 22.