Wonderful New Neuro - could it be???

[anon07072023]

I met with my new neuro today. She is GREAT!!!  I'm so happy to be switching over to her. Plus, she's in my city, so no more 2 hr drives each way to see my old neuro.  

She's definitely keeping my diagnosis of MS - RRMS.  She said she's starting me on IVSM for 5 days - but at a lower dose than what I had before - 500, instead of 1000, since I had a bad reaction to it last time.  She told me that I need to be on a higher dose of Baclofen, so I'm going to be slowly bumped up from 30mg/day to 60mg/day. And she's considering putting me on Amprya (if I want to try it - I don't know enough about it, yet, though). Any thoughts?

After her neuro exam, she said I have diminished vibration sensation on both lower extremities, and weakness on my left lower extemity and on my hand, too (I don't remember which hand).  She could still see the scarring from the optic neuritis that I had in my eyes and said that with corrective lenses, my best vision is about 20/40.    

She gave me all the videos/booklets on the DMDs and said if I wanted to switch from Copaxone to something else, I could. I told her, that I think that I want to stay with the Copaxone for now.

I'm also going in for another round of MRIs - this time a thoracic spine one finally. The last t-spine I had was almost 2 yrs ago, and I'm sure there's more going on there, than anywhere else.  So, they'll probably see more lesions. I hope insurance approves it.  And she gave me 3 different books on MS - for FREE.  

So....I guess there are some good ones still out there....Yay!

-Kelly :-)

[anon07072023]

Thank you everyone for joining in with me in my celebration.  :-)
And thanks for the advice, too.  I'll definitely read up on Amprya before I decide anything. And I'll wait until the IVSM is completely finished and I have a few minutes to breathe afterwards.  Right now, I'm thinking that I'm not going to take it.  

-Kelly  

[RazCarver]

Great news Kelly. just made me smile because i am so happy for you.

Raz

[grannyhotwheels]

Oh Kelly, I'm so happy for you... You do realize you have made several people jealous on here... lol... I'm just kidding... I know everyone is just as happy as I am... Isn't it wonderful to finally have someone that will actually listen to you instead of treating you like a mental patient?

I recently asked about Ampyra myself on here... The feed back I got was some people have no side effects and can tell improvement in their gait while others say it increases neuropathy pain... I have enough pain as it is so I'm a little on the leery side about weather to try it or not...

Keep on posting so we can continue with you on your journey...

I'll be praying,
Carol

[doublevision1]

You got a good one, this is great news Kelly!  Hopefully this inspires those who aren't happy with their current specialist to keep looking once they feel they've given it a fair shot.  There really are wonderful neuros out there, as you have proved today.  Very pleased for you!

[twopack]

So much good news in one little space Kelly.  I'm so very happy to hear this.  I think I even hear some hope bubbling up from inside you that believes you could actually start feeling and functioning a little better with the treatment tweaking your new backyard MSologist has initiated.

Ess has a terrific idea about pacing trials out so you can get an accurate idea of which treatments deserve credit for an improved Kell-Bell and which ones need to be labeled as expensive duds or worthless junk.

Just goes to show that great neuros don't always congregate in the teaching centers.  We can find them hiding in plane sight in nooks and crannies everywhere.

I'm going to take that little smilin' face of yours and use it to help me get a start on a good night's sleep.

Mary

[jujuminx]

You patience has paid off!!   Couldn't have happened to a nicer woman. Congrats.

Can't help you with decision on Amprya, sorry.

Enjoy the relief of having a neuro in your corner.

Julie

[Sumanadevii]

Kelly, I so remember my first visit with my "real" neuro.  As she talked, I was so angry and upset by all health professionals, I talked right over her.  She was gentle in her approach but I was loud and was GOING to be heard this time...lol...She seemed to understand the hell realm I had been living and began to dig into my history and tests.

I know that feeling.  One of total relief to have finally found someone that not only listens to  you but slowly begins helping you put your life back together.

I know good things are coming, Kelly.  Enjoy this realm!!!!

[essdipity]

Here's a recent discussion about Ampyra. It even contains links to other discussions.

http://www.medhelp.org/posts/Multiple-Sclerosis/Ampyra/show/1553614

If you decide to try it (and your insurance approves---it is very pricey), why not wait to see how the steroids work first. That way you'll have a better idea of what's going on.

It's great that you like this new doc! I know you've been under a great deal of strain, so here's one thing you can cross off your list. May you feel better soon.

ess

[kel1lost]

I am so haooy for you!!!!  Congradulations Kelly!

Kelli

[drsdonthelp]

Hoooorrrraaaaayyyyyy!!!! Can you send her my wayyyyyyyyy!!! LOL
I am so happy for you, its a God send when you get a caring doctor.

Big Hugs with a Great Big smile!! :)))))))
Pam

[rendean]

Dear Kelly,

I am so happy for you!!  I know you could use some good news. I hope the drug increase helps and I know several people on here use Amprya. You can use "Search this community"  found in the green bar at the top of the right sidebar.

Looks like you have hit the jackpot of neuros, congratulations!

Smiles and hugs,
Ren

[Lulu54]

Yay!  This is great news, Kelly,  Eveyrone should have a great neuro to work with since MS is a life time commitment.  

Congratulations on finding a keeper.

best,
Lulu