Better Nuroligist Different Diagnose kee... - My MSAA Community

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Better Nuroligist Different Diagnose keeping my fingers crossed...

Msbeauty01 profile image
Msbeauty01
β€’16 Replies

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.

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Msbeauty01
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16 Replies
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greaterexp profile image
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 profile image
Kenu

That’s great to have a wonderful neurologist that listens and willing to prescribe medication that helps and you need πŸ‘. I hope this works out for you and you become stable and no further progression πŸ™πŸ˜‰ Ken 🐾🐾

falalalala profile image
falalalala

I hope it helps you!

JTZES profile image
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 profile image
Msbeauty01β€’ in reply toJTZES

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

GrowthMotivator profile image
GrowthMotivatorβ€’ in reply toMsbeauty01

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!πŸ˜‡

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 profile image
IFwczsβ€’ in reply toJTZES

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 profile image
GrowthMotivatorβ€’ in reply toIFwczs

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!πŸ˜‡

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 profile image
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 profile image
Msbeauty01β€’ in reply toLilith08

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 profile image
Lilith08β€’ in reply toMsbeauty01

Oh, good!

rjoneslaw profile image
rjoneslaw

that is great news

mayestas profile image
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 profile image
Msbeauty01β€’ in reply tomayestas

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 πŸ™

cjsmith79 profile image
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 profile image
Msbeauty01

Thanks, I've only been on it for a few days. So far NoπŸ€” it has not worked. Maybe if my first Nuroligist had cared I wouldn't be in such bad shape. I'm hopeful and Pray πŸ™ that it helps.

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