Belated thank yous

[PWilli]

Thank you everyone for the birthday wishes back in August. It’s been a rough, bumpy road since I had Covid last June (fortunately it was 2 days after returning from Oberammergau to see the Passion Play.) The tour was postponed in 2020, I can’t remember the reason….oh yes, it was Covid! 😆 The illness wasn’t too bad but I’m still suffering after affects, shortness of breath, edema and overwhelming fatigue…the worst I’ve ever had. I had a nuclear med stress test on Friday which fortunately was normal! I’m thinking long Covid but I’ll see what my primary care doctor does now. My friend who is an internal medicine doc gave me some suggestions from all his work with long Covid patients.

I’m happy to report we had a granddaughter born in late April….between our other daughter’s birthday and our son and daughter-in-love’s second anniversary. And we have another grandchild expected in Sept!

I see my new MS neurologist (#4) on Wed! I’ve noticed changes which my previous neuro just said objectively things are the same. She became irate when I asked her what she meant when she charted…RRMS vs transitioning. “I hate the fact that pts have access to my clinical notes. Those are for me to remind myself of certain things!” Well, those clinical notes are MY records!! I’m excited to see the head of the MS dept and then she will decide if she continues to follow me or someone else in the department is better suited for me. I’ll update after that appt! I don’t think Aubagio is controlling my symptoms anymore and was thinking Ocrevus, but after reading experiences with hair loss I’m not sure. I suffered severe hair loss within 3 weeks of starting Aubagio and don’t want to go through that again, especially since there are still areas that don’t have hair. Is anyone familiar with the new DMT-Brim-something? I was willing to try that until I read a side effect could be hair loss. 😑

I know I just wrote a novella but this pretty much catches you up on my life. I’ve missed all of you…the love and support and the humor!

[greaterexp]

Glad you had a good birthday. Thank you for the updates.

[PWilli in reply to greaterexp]

Thanks, greaterexp.

[Xvettech]

congratulations on your grandchild and another coming :). Sorry you are fighting Covid and the neurologists! I wish you the best with everything!

[PWilli in reply to Xvettech]

Thank you for the congratulations. It’s those happy moments/times that keep me going. I will continue to self advocate, along with my husband who will step in when I just can’t due to frustration, fatigue, tired of being on hold with insurance. 😂

[carolek572 CommunityAmbassador]

Thank you for your updates,  PWilli . You certainly have been through a lot, good (your precious grand babies), and no so good (COVID). You are smart to be your own advocate. Doctors should be our health partners, and work with us. Keep Smiling, my friend.

[PWilli in reply to carolek572]

Thank you, Carole!

[RobertVail78]

I can't remember what my experience was when I was taking Ocrevus. I've been on so many treatments. About 3 months ago, my diagnosis changed to MOG disease. I can't spell or pronounce those three words. That's the official word or abrevation. It's a 6 hour infusion. I've had the first 2 mini infusion to prep for the 1st six hour infusion. That's weird trying to explain, hopefully you followed. But I can't remember almost anything 😕. This new diagnosis has been a shock to me. But it's a new treatment for a disease that the medical world has stopped and said these treatments aren't working. I pray your medical team can find a way to help you 🙏

[mrsmike9]

Oberammergau! I'm jealous! I've always wanted to see it. You are so lucky.

So glad to hear of your grandchildren. I only have one (born last October) and have discovered the joys of having her around.

Sorry about your hair loss. I've been on Aubagio for years and have not been "blessed" with that yet. Or if I am, it's not enough to notice. Good luck with new doctors and meds!

[DM0329]

Boy can I relate to your post about Aubagio and hair loss. FWIW, I just started on Aubagio in April 2022. I had been self-injecting Avonex since September 1997. It had been 25 years; I had just turned age 55 and started Menopause.

With the global pandemic, I wanted an easy tx, and my MRIs were stable and any progression was very slow. So, Aubagio is an immune-modulator and NOT immune suppressing. So, my choice was clear. But, I hate the hair loss and occasional GI issues.

Congrats on your grandchildren and best wishes with your "new" neurologist and figuring out the best treatment.

[PWilli in reply to DM0329]

I’m so sorry that you are going through the hair loss “thing “ with Aubagio. And the GI issues…yeah, that’s another thing. I hope you do well with it. The hair does come back…wish mine had come back curly and thicker! Lol

Pam

[OSU13]

I've been on Abagio since 2017. I have not experienced any side effects.

I'm glad you found a new Dr. you like. That's one of the most important things an MS patient needs. Good Luck! Have a great day!

[PWilli in reply to OSU13]

I’m glad Aubagio has worked well for you. Test results will determine if I stay on it or not.

[OSU13]

Good Luck with the results of the tests.