Hello, how are you?

[Jesmcd2]

How is your MS doing? How did your last appt go?

For you new folks, say hi 🙂 We really are a friendly bunch and would love to get to know you !

🤗💕🌠

[mrsmike]

Last appointment was ok. Everything seems to be status quo, I'll take it!

[Jesmcd2 CommunityAmbassador in reply to mrsmike]

That's always a good thing!! 🎉🤗💕🌠

[Tazmanian]

My ms is good, my next appointment is in 2 days and I hope everything is ok

[Jesmcd2 CommunityAmbassador in reply to Tazmanian]

We will All be Hoping with You My Friend!! 🤗💕🌠

[Tazmanian in reply to Jesmcd2]

Thanks

[bxrmom]

Have had to reschedule my appointment and come to find out that was my Neuro's last day so now in Dec I will be seeing, yet another new Neuro. Can't tell you how many new Neuro's I've had since moving to MI in 2012 All the specialists seem to stay for a year, two max, then move on somewhere else.

Other than that, my MS seems to be doing ok as far as I can tell

[ahrogers in reply to bxrmom]

I just found out my second neuro since I moved to the Carolinas 5 years ago is leaving. Will meet the third in January. My neuro wanted me to see her in November but the first appointment she had was January. Waiting to get MRI appointment and also to see the orthotist about a better AFO. My foot drop has gotten worse and when he fitted me for the one I have he said it had the least support. It was all the support I needed when I got it 2-3 years ago. Hoping a new one will help me walk better!

[Jesmcd2 CommunityAmbassador in reply to ahrogers]

You have a lot going on ahrogers ! Sorry about your neuro!🙁 Hoping your new one is good! 🙂 Kenu has a good AFO, I personally think.. you should check his out, I have the trulife AFOs. Ck out the different kinds and see what might work for you, there are all kinds of AFOs! Good luck!🤗💕🌠

[ganna64 in reply to bxrmom]

Maine here. I am on my 6th neuro. Can't remember all the PCs I've had. I guess it's the same everywhere.

[bxrmom in reply to ganna64]

I think that's about the same number I'm on Seems every year or every other I end up with a new one. The one I wanted to see when one of the Neuro's was leaving doesn't take MS patients....strange. One of the Neuro's in the practice I already left as I don't care for him and how he talks to you and always has a student doing the work before he gets into the room. Once is fine, not every darn appt.

[ganna64 in reply to bxrmom]

Totally agree. You are paying to see a specialist. I know hands on is how they learn but not every time.

[Jesmcd2 CommunityAmbassador in reply to bxrmom]

I'm so sorry bxrmom 🤗🤗 I would be asking the next one how long they were staying, before I started seeing them! 🤣 No seriously, I would.😐 MSAA can't help? 🤗💕🌠

[bxrmom in reply to Jesmcd2]

I don't think they could help. I'm just glad I didn't have to go find a new Neuro somewhere else. My records are right there and its local. I don't drive and don't have anyone that could take me out of town. There is a local service here that I call and schedule a ride for when I need a ride to my appointments. Because I'm on disability, it doesn't cost much to get a ride to/from my appointments. I just call 2 weeks in advance so they don't pick me up super early for an appt.

[Jesmcd2 CommunityAmbassador in reply to bxrmom]

I totally understand!🤗💕🌠

[hairbrain4]

My last neuro visit was good, the next appt is in December. My symptoms are gradually going away & the brain fog is gone. I started taking Selenium a couple of months ago to help my thyroid. That's the only thing different except how I'm praying. instead of asking God to take it away I'm thanking him for already taking it. There's a little more to it than that but I don't want to go into it on this site. If you are interested you can send me a private message.

[Jesmcd2 CommunityAmbassador in reply to hairbrain4]

I'm so glad to hear your appointment went well!! And cog fog lifting! Woohoo!🎉 Careful with the selenium, to much isn't good for you!🤗💕🌠

[hairbrain4 in reply to Jesmcd2]

Not to worry about taking too much. I'm taking dosage under drs advise for my thyroid trying to keep my TSH in balance, it keeps teter tottering. It's helping a lot.

[Jesmcd2 CommunityAmbassador in reply to hairbrain4]

What I always want to hear! 🙂🤗🤗💕🌠

[kdali]

Hi! MS is behaving itself right now 🎉 There's nothing new with me, and it's been over a year since a negative change 🎉 My last appointment, second with a specialist, was much more fun than expected. My gps sent me to a dumpster, which was foreshadowing for how the visit would go. Silver lining is my deductible was met beforehand 🎉 so I'm not out any cash for that waste of time (an impression I believe to be mutual). I'm leaving out the details because it will just upset me again, and I'm enjoying my peace and play doh today. Speaking of, play doh is awesome for fine motor skills. Anyone with tricky hands may want to invest in a box, I think $7 at target or Amazon. There's also recipes online if you prefer to make some for cheap, which also won't have a weird odor.

Wishing everyone peace and play doh 🙏🥰🤗

[NorasMom in reply to kdali]

"Weird odor"? A pox on you! The Demeter cologne line came out with a Play-Doh version some years back, and my kids got it for me. I got to smell like Play-Doh aaaaall the livelong day. I also used to keep some of the real stuff in my desk drawer at work, and I'd pull it out and play with it when I was having a bad day.

[kdali in reply to NorasMom]

No way!! 🤣 Weird like strange, but not gross. They have scented versions now and I have not braved those, mostly because the kids mix them together immediately. The desk stress trick is perfect!! I wish I had thought to pack some in my work bag years ago. Portable therapy, I love it! I could brand some essential oil chill out doh and make millions 🤣

[NorasMom in reply to kdali]

Do NOT get the one called something like "yardwork for men". It's dark green, and it's about the nastiest stuff I've ever smelled. I paid at least a whole dollar for it at the discount store, and I was sooooo disappointed.

[kdali in reply to NorasMom]

Eew 🤣🤣🤣

[Jesmcd2 CommunityAmbassador in reply to NorasMom]

Ewww 🤢🤣😂🤗💕🌠

[Jesmcd2 CommunityAmbassador in reply to kdali]

Maybe you should have just had the appointment at the dumpster like the gps said!😐🙂 1yr!🎉🎉 kdali And the smell of play doh is a rit of passage!🤣😂 You never forget it! And don't ever get on the rug!😢 🤣🤗💕🌠

[kdali in reply to Jesmcd2]

Bahahaha, I almost spit my drink! 🤣🤣🤣🤣 True, there's no mistaking it!

[Jesmcd2 CommunityAmbassador in reply to kdali]

🤣😂🤣

[NorasMom]

I jumped the gun a few weeks ago, thinking I was having another exacerbation, but it was just the summer heat and an unusual amount of stress. Routine follow-up next month, but my neuro had to go away and I'll be meeting with a new PA. I've bounced back and am doing great!

[Jesmcd2 CommunityAmbassador in reply to NorasMom]

I think we all do that! As in over do it and then think we have a relapse!😦 I'm so happy it wasn't! 🤗💕🌠

[Sandydemop]

my MS is noisy. the summer heat does not help for sure but i'm still getting worse. My doc wants me to switch to Mavenclad. I have to fill out forms because the insurance company denied it. ugh. Not my favorite thing to do. Otherwise good. I started drinking kale/spinach smoothies and i think i have a little more energy than usual. thanks for asking Jesmcd2 How about you?

[Elizt3 in reply to Sandydemop]

Just curious what you mean by “noisy”? I assume there are persistent symptoms that you have? I would say mine is also noisy -, I have constant pain and tightness and sensitivity in my feet, shins, and around my middle. It’s distracting at the least and can be distressing at times. Especially in this hot humid weather.

[Sandydemop in reply to Elizt3]

Hi Elizt3 yes i mean symptomatic. I'm sorry you are struggling too. some days are better than others. I have the tightness in my psoas/quads. very unsteady walking. Humidity is not my friend. But physical therapy helps. I really look forward to going.

[Elizt3 in reply to Sandydemop]

I’m thinking a round of pt might be useful for me. My Balance is tentative.

[Sandydemop in reply to Elizt3]

My PT works on balance issues too. Just today she noticed i put all my weight standing on my stronger side. that is probably why that ankle is inflamed and painful! It's something i wasn't aware of and of course it affects my balance. Wishing you the best.

[Elizt3 in reply to Sandydemop]

Wishing you the best as well 🌸

[Sandydemop in reply to Elizt3]

thanks. You can also probably find balance practice on you tube. I have noticed you can find any thing on Youtube. I found yoga for inflammation!

[cindyrn68]

My next appointment is in November with a new doc. I loved my previous doc but it was time for him to move on. So, Dr. Singh it is. I've got some new stuff going on but it is not life altering. MRI was unchanged.

[Jesmcd2 CommunityAmbassador in reply to cindyrn68]

I'm so very glad to hear MRI was unchanged!!🎉 That's always good news!

Keep track of "new stuff" 🤔 🤗💕🌠

[JSSimp]

I’m doing ok. Started Vumerity about 3wks and getting use to the changes. Experiencing Sleepiness and Fatigue a lil more. Plus weather is really hot in AZ around 107. Last doctor appt went well with next visit in Jan 2023. Thanks for asking🙏🏾

[Sandydemop in reply to JSSimp]

How do you take that new drug? Orally or infusion?

[JSSimp in reply to Sandydemop]

I take Vumerity orally.

[Sandydemop in reply to JSSimp]

Is it every day or a few times a year? how are you reacting to it?

[JSSimp in reply to Sandydemop]

I take Vumerity daily 2tabs twice a day. I was on Dimethyl Fumarate for 2yrs and after loss of coverage my doctor move me to this med.

[Sandydemop in reply to JSSimp]

Tecfidera. how did that work for you? I wonder if that has a PML risk because my doc didn't offer it to me.

[JSSimp in reply to Sandydemop]

It worked well. Tecfidera does have a PML risk in the event my doctor thought it was a good choice for me during this time🙏🏾

What are you taking? We can private message as well if that would work better

[Sandydemop in reply to JSSimp]

no this is fine. not too personal. I am taking Aubagio but still declining and i am at risk for PML so certain drugs including tec fidera and tysabri were out.

[JSSimp in reply to Sandydemop]

Ok. Many blessing with the med🙏🏾

[lcms1]

My last appt in June went very well! 😁 I got MRI scans done in early June and my neuro said that the new lesions that appeared in my November MRI scans after I had a relapse when I miscarried were not extensient on the new scans today. I had no changes on MRI since 2017 and no relapses until this past fall. Was previously on Gilenya and got off to try for a baby. Wooo doggie, coming off Gilenya is no joke!! 50% chance (probably higher) of relapse when you stop taking it. No hate on Gilenya, it took care of me for 4 years. She said we caught it early and put me on Ocrevus in December. I've had two O infusions, technically 3 since the 1st dose is split in two. I feel great, no complaints, and I've been having those good days when you don't even think about MS. We'll be trying for a baby again soon! Thanks for asking! How's your MS treating you?

[Jesmcd2 CommunityAmbassador in reply to lcms1]

Awesome to hear! Wishing you luck!🤗💕🌠

[falalalala]

All's well, thanks.

How are you?

[Jesmcd2 CommunityAmbassador in reply to falalalala]

All's good, thanks. 🤗💕🌠

[falalalala in reply to Jesmcd2]

I'm glad to hear it

[Jesmcd2 CommunityAmbassador in reply to falalalala]

I'm pretty sure it's ok? I had a panic attack as soon as my neuro walked in, shaking his head and laughing... At that point I had to get out! 🙁 So I had noo questions, when I had a few🤣 did my walk and got out!! Fastest appointment I ever had!! 😂🤣🤗💕🌠

[Sandydemop in reply to Jesmcd2]

Hooray!

[twooldcrows]

my apt .went great she said i looked great...

[Sandydemop in reply to twooldcrows]

so glad you have good news!

[twooldcrows in reply to Sandydemop]

you give it to us all the time with your great jokes and funnies...have a wonderful day ...

[Sandydemop in reply to twooldcrows]

thanks!😍

[Cutefreckles72]

My PPMS is doing okay. My next appointment is in October. Will start another round of PT tommorrow. The foot drop and balancing are big problems for me.

[Jesmcd2 CommunityAmbassador in reply to Cutefreckles72]

Wish you luck 🤗💕🌠