1st Neuro Appt after DX'd last week ???????

[green924]

Been trying to figure out how to word this question for way to long, so here goes...

What/how should I expect my first appointment to be tomorrow. I found out late Thurs afternoon (6 pm) that my LP did show definant MS and the Dr wanted to see me asap (but they were really closed) so the reception.>>> desk would call me Fri morning. They did and I see him @ 11 am tomorrow. Can anyone give me advise on what to ask, what he should tell me, etc. etc. Thanks in advance for any input and hope this all makes some sense :) :(

Live, Laugh, Love
Mel

[Lulu54]

Wow! Another midwesterner - the numbers of KY members are quickly catching up with us Buckeyes - the hoosiers aren't far behind.  We do seem to have a serious cluster of MS here in the midwest.

You should be prepared with the questions that are undoubtedly floating through your head right now -

what type MS (odds are its RRMS),
what;s the prognosis  (no one can answer that),
what Disease modifying drug is recommended?  (expect lots of literature and dvd's to take home and watch to make your decision)

I'm assuming you have already had a full neurological exam and this will be a talking appt.  The neuro should not be rushed and should be willing to take all the time you need to talk through your questions.

Get a good feeling too when the neuro expects you to call - new symptoms, exacerbations, etc.  

Be sure to ask for copies of every test for your own records.

Take someone with you to pay attention because your head will be swimming with all the info being tossed your way.  

Ask the doctor to write down any and all instructions for meds and followup in case you have confusion and have quesitons later.

I hope some of this helps.

Now let me back up and tell you how sorry I am that you have MS  , but  now you at least know the name of the enemy you have been battling and you have a very good chance to keep it quiet.  Life goes on, with or without this MiSerable disease.

Be prepared for lots of different emotions as you process this information over the next day,s weeks and months.  

Stay in touch, ok?

lots of love to you, and welcome to the club!
Lulu/Laura

RRMS, DX'd 9/08

[green924]

Thank u so much... In the past I only really checked out rheumatic diseases b/c thats what ever Dr pointed to! Now when I really need to be able to research stuff it seems harder to read, see, understand etc... Anyways, Sorry to keep bothering you on the weekend, but do you have any suggestions on how to help my 9 yr old (and my hubby, he was crying when he had to leave for work, OMG, we've been together for 15 years and are about to have our 12th anniversary on the 24th) and I think I've only seen him shed 1 tear a handful of times! Feel like nothing I type makes sense so sorry in advance! Thank you again for welcoming me!

Live, Laugh, Love
Melanie - 28

[rendean]

Hi,

We haven't met before so I'd like to welcome you to forum as well. I was diagnosed this past April after years of symptoms. I'm sorry you have MS but you truly did land in the right place for information and support.

Have you discovered the Health Pages in the upper right corner of the page , by the yellow icon. There you will find lots of easy to understand information about all kinds of things relevant to MS.

As for support for your family, there may be something in the pages to help but I know you can also contact the National MS Society and they will be more than happy to send you information on MS , including some that are age appropiate for your son.

My best advice is to take one day at a time and sometimes it may be one hour at a time, but you've got support here whenever you need it. Laura's suggestions for the new neuro are exactly what you should experience. Don't be afraid to ask this neuro about what ever is on your mind. You need to have a good working relationship with your neuro. The best advice she gave is to take someone with you who can help you take down information and perhaps ask questions to help clarify things.

Your neuro should also have information packets for you and your family as well. You may have to ask for them.

Let us know how things go tomorrow. Wishing you peace as you begin this new journey in your life.

Ren

[green924]

Thank you both! My hasband is going with me tomorrow, snd he's normally pretty level headed so maybe between the 2 of us we can figure it all out. Guess I'm going to try to make a list of what I do from here.... Just pretty unexpected and we don't have the greatest Dr's around here and I'm uninsurable b/c of other pre-existing conditions. Its all just kinda scary not knowing much right now... Thanks again and talk to you all soon :)

Live, Laugh, Love (all the time)
Melanie

[HVAC]

I am glad your husband is going with you. My husband needed to hear what the MS Specialist said to.

I contacted my local chapter of the MS Society. They talked to me and sent me lots of information including the book Multiple Sclerosis A Guide for the Newly Diagnosed.

My DR. has a social worker and MS Nurse you can see as well to talk about issues.

Good luck,

Alex

[Lulu54]

Melanie,
You and your husband and family have a lot to digest ... take it slowly, one piece at a time.  You have plenty of time to learn and keep learning.  I just met a man yesterday that has lived with MS for 44 years.  he now walks with a cane, but other than that is getting on pretty close to fine.  

Treatments for MS have changed so much - when we think of MS patients, we think of those images of people in wheelchairs, dependent on others.  That is the image that raises money but is not the whole picture.  Almost 85% of us will live our entire lives without the need for a wheelchair.  

MS does not shorten life spans, unless a person has the very rare MS that progresses almost immediately.  It is a disease that will be your constant compannion, but you will learn to live with it and find a way to cope with the daily nuisances.

Your husband will also need some time to understand what this disease is and how it will and won't change your lives.  

good luck with the appt. this week and be sure to ask your questions.  Alex is right about the NMSS having great resources too.  Use all of the tools available to you .

my best,
L

[Wobbly]

let us know how it goes...

wobbly
dx

[Ufrustrated2]

>>Take someone with you to pay attention because your head will be swimming with all the info being tossed your way.  

i will most certainly do this my next neuro visit or take a recorder. so tired of them saying something in person or on the phone, yet paper med records do not reflect that. is it [my] mind or faulty record keeping?

Paducah huh? not too far from the lakes where i used to swim and ski a few hundred years ago. Go Kaintuck!!

[green924]

Thanks to everybody for the info and support! The appt. was horrible, the Dr's here are very basic and can't seem to answer Q's at all. Only thing he could tell me was he wanted me to start Copaxone, but I'm waiting on the assistance forms from Shared Solutions (NO INS DUE TO OTHER PRE-EXIST COND). Besides the prescription, all he could tell me was that my arthritic flare-ups, pain, swelling is not part of my MS. My rheumatigist is also very basic, if he can't fix you with anti-inflam drugs and steriods he has no idea what else to do. Both Dr's seem to just pull out a list of drugs and go down the list.
I'm overwhelmed trying to find/contact/look into all the other info out there...

Thanks to everyone again and sorry it took so long to update... I have felt horrible ever since my LP and EEG plus all the other STRESS! YUCK, YUCK, YUCK!

Oh well, LIVE, LAUGH, LOVE

Melanie

[Lulu54]

Melanie,
I'm wondering ... have you applied for Social Security Disability Income and the medical coverage that goes with it?  You might want to consider that process.  If you need guidance, start a new post with that question so those who have been through the qualification stuff can be of help to you.

L

[green924]

I have filed, but only in the end of July... I was able (sort of) to work up until January this year. I have also had to file for assistance for the recent testing I had done thru our hospital. I have this joke of a short/long term disability insurance thru my previous employer but they have been reviewing my file since June. Up until just a few days ago when they received my MS dx they were being really mean/rude but they have changed their attitude pretty abruptly. Thanks for the advise and support. Hope you have a good day! (I used to always say GREAT, but I don't know what that is anymore! HA!)

Live, Laugh, Love
Melanie