Better Nuroligist Different Diagnose keeping my fingers crossed...

[Msbeauty01]

Hi Everyone

My new Nuroligist really helped me. He ran more test and let me know that I have Progressive MS which he said it's rare. I'm getting weaker and sicker but Thanking God I'm still here. He changed all my medicine including my MS medicine. I'm now taking Ocrevus infusion treatments and only have to have them every 6 months.. He also have me some Duloxetine for my headaches and Ampyra to help with my walking also Baclofen for my muscle spasms... I'll keep you guys posted on how the medicine makes me feel.

[greaterexp]

A good neurologist who is willing to work at treating your symptoms is a treasure. He/she can't cure us, but we are always so grateful for one who listens and tries to make us more comfortable. Thanks for keeping us in the loop about what's going on with you!

[Kenu]

That’s great to have a wonderful neurologist that listens and willing to prescribe medication that helps and you need 👍. I hope this works out for you and you become stable and no further progression 🙏😉 Ken 🐾🐾

[falalalala]

I hope it helps you!

[JTZES]

How ironic. I went to my Neurologist on Tuesday that it appears not to be working for me and to make sure I'm not suffering from anything else she is sending me to my PCP. If he doesn't find anything then she is saying I'm in the middle of an exacerbation. She then she said she would consider me as having Primary Progressive. She is unsure what DMT to put me on. Both of the remaining DMT'S are very hazardous. I'm keeping my fingers crossed as well that my PCP finds something else wrong.

[Msbeauty01 in reply to JTZES]

Please keep us posted. I'll be praying. I have not taken my first infusion yet.

[GrowthMotivator in reply to Msbeauty01]

HELLO. I'm new to the community board. Just read your posts. My sister was dx 1997. She's now 65 and she stays VERY positive and turned the letters MS into VERY affirming statements (as her medication): i shared this with another community member and thought maybe I should share it with you 😊

My Savior

My Supplier

My Strength

My Salvation

My Success

My Source

And so on!😇

As her sibling it's not always something I expected to be our reality; I'm all she's got (never married, no kids).

Faith + family + fun can be a HUGE HELP.

I send you these 3 F's and pray your quality of life improves.

Tamara

The Growth Motivator

[IFwczs in reply to JTZES]

This was the case with me. Except my former PCP told me I couldn't walk all of a sudden because I have MS. Two years later, I finally figured out that I probably have candida overgrowth (I kept saying I couldn't walk om steroid eye drops), and my new Integrative Medicine doctor confirmed it, Read the book by Ann Boroch "Healing Multiple Sclerosis" if you haven't already. Unfortunately, we have to be our own doctors first because no one else knows our bodies better than we do.

[GrowthMotivator in reply to IFwczs]

HELLO. I'm new to the community board. Just read your comments; I too have her book. I really wanted to have my sister meet her but it wasn't meant to be unfortunately. My sister was dx 1997. She's now 65 and she stays VERY positive and turned the letters MS into VERY affirming statements (as her medication):

My Savior

My Supplier

My Strength

My Salvation

My Success

My Source

And so on!😇

As her sibling it's not always something I expected to be our reality; I'm all she's got (never married, no kids).

Faith + family + fun can be a HUGE HELP.

I send you these 3 F's and pray your quality of life improves.

Tamara

The Growth Motivator

[Lilith08]

I'm glad to hear of the positive new direction. It's unfortunate that you've been recategorized to PPMS, but I've been reading lots of good reviews here about Ocrevus. Have you had your first infusion yet?

[Msbeauty01 in reply to Lilith08]

Hi, Thank you. No I haven't had it yet had to wait in my insurance to approve it and they called today and said it was approved.

[Lilith08 in reply to Msbeauty01]

Oh, good!

[rjoneslaw]

that is great news

[mayestas]

Yes I am on Ampyra, have been on it for a while. Seems to be working. I have foot drop in the right leg and I'm now not wearing an a f o. Has helped my gait and relieved much of my back pain.

[Msbeauty01 in reply to mayestas]

I have severe back pain, unsteady gait and have to use a walker. If my first Nuroligist had of cared I wouldn't be in such bad shape. I'm praying 🙏

[cjsmith79]

I've been on Ampyra for a while now. For me it sure made a difference. I hope it works as well for you as it did me!!!

[Msbeauty01]

Thanks, I've only been on it for a few days. So far No🤔 it has not worked. Maybe if my first Nuroligist had cared I wouldn't be in such bad shape. I'm hopeful and Pray 🙏 that it helps.