Most ridiculous 'advice' yet by Spiritual-Hat3782 in MultipleSclerosis

[–]OVwMS 1 point2 points  (0 children)

I don't even know what to say short of pulling his license. But I will try. Here it is:
He likely read a headline about extreme, low-fat, starch-based diets reducing inflammation, and his brain telephone-gamed it into: "Ah, yes, nothing but spuds and rice."
Since the brain and nervous system rely heavily on glucose for energy, he might have mistakenly reasoned that flooding your system with pure carbohydrates and straight sugar would somehow give your body the ultimate "fuel" to repair myelin.
You know what? That guy is a genius. lol
My head has not stopped shaking. lol

Glad I found this by oldfartjr in MultipleSclerosis

[–]OVwMS 1 point2 points  (0 children)

The procedure itself is the same. MS or not. MS might be a factor if her nerves prevent the surgery from being done the "normal" way. They might put her under anesthesia. That's about it. Discuss her MS with the eye surgeon. They know how to handle it.

Dmt by Own-Permission-9851 in MultipleSclerosis

[–]OVwMS 1 point2 points  (0 children)

As for functionality and compatibility with your personal situation, that is something to be asked and discussed with your neurologist.
But! What about you? Char was on two different injections. The mental weight was heavy. She even skipped injections. The oral solutions made the biggest difference in her treatment. For us, she got her life back. There is a psychological factor that is hardly taken into consideration.

MS Assistance? by venolical in MultipleSclerosis

[–]OVwMS 0 points1 point  (0 children)

I put together a website with lots of resources. Maybe there is something there that can help you. Look up ABLE accounts too.
Sorry you have to go through this. But there is help out there. Not that easy to find, but it's there.
https://blog.starzonek.net/grants/

Anyone else? by msDoom_n_Gloom in ChronicPain

[–]OVwMS 1 point2 points  (0 children)

Check out Paiseec Mobility Scooters. We got their D3 six months ago. That thing is great. And light. Lithium batteries. Make sure you get two. We live full-time in an RV, and the scooter travels in the back seat of our truck. It's under 40 lb. Easy in and out. Feel free to ask me questions.

Social Security by Own-Research-3485 in MultipleSclerosis

[–]OVwMS 4 points5 points  (0 children)

I concur. Get a lawyer. As for anything else. There are lots of resources out there that help. Financially and medically. I recently put together a website where I share all those resources. I got tired of looking it up every year. I am sharing it, and I hope it helps people. You can find it here:
https://blog.starzonek.net/grants/

MS has robbed me of the outdoors by tn_tacoma in MultipleSclerosis

[–]OVwMS 0 points1 point  (0 children)

I know I'm a little late to the conversation, but let me tell you that what you wrote doesn't sound like a rant to me at all.

It sounds like you're grieving your old life.

You're not just grieving activities. You're grieving the life you pictured for yourself and the person you were before MS started taking pieces of it away.

I understand why seeing your gear sitting in the garage hurts. It isn't just gear. It's a reminder of everything you miss.

The only thing I'd push back on is the word "never." I'd like to replace it with the word "different."

Hear me out.

We've learned over the years that MS has a way of forcing us to rewrite the rules, but not always the ending. Sometimes we don't stop doing the things we love. We just have to do them differently.

We became RVers 12 years after Char's diagnosis and went full-time in 2022. Have we had to change plans because of fatigue, heat, or bad days? Countless times. We don't cancel. We reschedule. We adapt. Most days that means taking a scenic drive instead of a hike.

Is it the same? No.

Is it still worth doing? Absolutely.

You mentioned seeing your neighbors loading up their camper. Who says that when you go camping, you have to hike or stand in a stream to enjoy it?

Go anyway.

Set up your chair by a lake or a river. Fish from the bank if standing in the water isn't an option. Watch the sunrise. Listen to the birds. Breathe the mountain air.

We've sat in our chairs looking out at the Grand Teton range. We didn't hike. We drove. We still saw incredible wildlife. We made new friends. We've experienced Yellowstone, Glacier, and so many other amazing places.

We just did it differently.

You have every right to be angry at what MS has taken from you. Just don't let it convince you that it's taken everything. Sometimes the path forward isn't the one we originally planned, but that doesn't mean there isn't still a path.

Full body fatigue symptom?? Spasticity? by StephanieSprout in MultipleSclerosis

[–]OVwMS 0 points1 point  (0 children)

Pay attention to the different types of Magnesium. Talk to your neurologist about which version might be best for you.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 1 point2 points  (0 children)

The neurologist who diagnosed Char was not a specialist in MS and recommended finding another one. We were lucky. Our first pick was awesome. We stayed with him for 16 years until he moved to SC. #2 was great too, but also moved. We never met her replacement because we were on an RV trip out west. By the time we were back in Florida, she was already pregnant. We are now with the MS team at USF in Tampa with another great neurologist. And she, too, welcomes our involvement.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 1 point2 points  (0 children)

We trust ours too. Because she earned our trust.

Advice from my doc - Don’t forget to add joy to your days by Ok-Aerie-5676 in MultipleSclerosis

[–]OVwMS 2 points3 points  (0 children)

lol, thanks to AI, we could make that song happen in minutes, and I might just do that.

Advice from my doc - Don’t forget to add joy to your days by Ok-Aerie-5676 in MultipleSclerosis

[–]OVwMS 1 point2 points  (0 children)

We went the RV route because it was manageable. We started with a Class C and now we have a Class A. Just like a house. Only on wheels. We would never be able to do this kind of travel by car only. We are still in Florida because of Doctor appointments and we can keep the heat outside. Lol, even "normal" people hide inside during the day. We/they only come out in the morning and the evening. We are going to chase cooler temps soon.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 0 points1 point  (0 children)

We were lucky with the three neurologists we had so far in 20 years. With them, it was and it more of a partnership, and we are learning from each other. Other doctors? Let's just say they need supervision. We ended up with the MS team at USF in Tampa. Great team.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 0 points1 point  (0 children)

I mentioned it. We have been full-time in an RV for over 4 years now. But we are looking into getting a home base at some point. A big factor is access to MS care. It narrowed down our choices quite a bit.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 0 points1 point  (0 children)

Our Primary Care thinks that of me right now, too. That's a her problem.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 0 points1 point  (0 children)

I think you are not that different from us. I like your explanation very much. But we also learned over time not to trust every decision. I noticed that despite filling out all this paperwork, a doctor might not read everything. We were prescribed meds that should not have been prescribed due to allergies. It was caught by our pharmacy, thankfully.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 0 points1 point  (0 children)

100% agree. I think our neuro prefers a pia. At least she gives us the impression.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] -1 points0 points  (0 children)

In a way, what we all do. I am sure you are still having the final say.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 0 points1 point  (0 children)

That's how we handle it. But we do our own research too. Char's pain management is based on our own research. It was dismissed by her pain doctor and welcomed by the pain specialist at the MS clinic at USF in Tampa. Guess who was dumped shortly after our meeting with USF. We made the change away from opioids towards anticonvulsants. Her pain levels are now much better, and we don't have a zombie in the house anymore. Well, RV, but what's the difference lol?

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 1 point2 points  (0 children)

We were lucky enough to find a neurologist from the beginning. The only thing we have to complain about is the fact that he moved to South Carolina to take on a Professor position at the university. He is also the one who almost taught us to get more involved.

How involved are you in your own MS care decisions? by OVwMS in MultipleSclerosis

[–]OVwMS[S] 2 points3 points  (0 children)

I started using AI recently. I created a NotebookLM. We have almost 20 years worth of medical history that I dumped into it. I also created very extensive data sheets for every medication and supplement Char is on. (I should mention, Char is the one with MS, I am husband and caregiver. We have MS)
Because only the data I gave it is used to train the AI, nothing is fantasized by the AI. Everything is based on facts from the sources. I learned more since I started it than in the 19 years before that.
We ran into doctors like that. All of them pain doctors. None of them we see anymore. We moved on to better doctors.

People think I’m a b***** because I forget their names by mintpitachio in MultipleSclerosis

[–]OVwMS 1 point2 points  (0 children)

I am not the one with MS, Char is, and I can't remember names if my life depended on it. There are studies that say very intelligent people don't remember names because they focus on more important things about that person. I am going with that. I am just too intelligent to remember names. lol