Multiple Sclerosis

[Mizzoufan]

No update Dr. didn't come in yesterday. So no news is good news

 

[anniemae]

Ok Mizzoufan, here is my daily annoying check-in! I see you just updated, so I am happy you are up and hanging in. Please keep us updated. Hugs. Hope you get some relief and rest today.

 

[gwynne]

I have very little knowledge of MS, it is not my area of expertise. I do know a lot about complementary therapies and mind/body medicine, though.


Responding not just to this post, but to the previous conversation over the last couple of pages in re to diet.

I think there is a lot of room between, "Diet cures this" and "diet doesn't cure this", if you know what I mean. I think if someone is diagnosed with a devastating illness, that one of the things a person can control (in a situation where much isn't within their control), is their diet. So many people do find that improving their diet helps them, in general, because it makes them feel better to eat a certain way, in part because they're taking charge of at least how they respond to their disease. So not only is there nothing wrong with that, it's a good thing! Benefits could potentially come from feeling better overall and who's to say that doesn't help the disease state. So just speaking very, very generally about diet as one aspect of a therapeutic plan for someone's illness. There are certainly lots of other complementary therapies that can help, as well. (And note I am not talking about alternative therapies, there is a difference.)

I also have a lot of experience on these types of threads, being one of the originators of the long running breast cancer thread here, and I have to say, there has to be room for all opinions, really. All of us may not agree with all of the opinions offerered, but we have to be respectful that they are their opinions. If someone has a different idea, that's fine, offer it up, too, along with links that may be helpful, etc. But you'd hate to see a supportive thread like this one fall apart because people are fighting about opinions.


I really think you should reconsider if you have 38 years of intimate knowledge about this subject matter. You could potentially be very helpful here.

Sorry, don't mean to step on any toes or anything. Just wanted to offer up my thoughts in catching up in the thread. Mizzoufan, I hope things are going ok.

Good points.
My dh has serious neurological disease. When you are dealing with something that is not likely to be cured it's different than a condition or disease that might be cured or in remission for a significant length of time.
Diet/complimentary therapies can help make one feel better. Another benefit is being a little mindful about one's diet can sometimes help with keeping other possible health issue in better check.

At the end of the day, though, many neurological conditions are treated with medications. Some are easier to take than others. It's not easy keeping up with them, adjusting as needed or adding new ones. Infusions can sometimes wear you out and it may take a bit of time to get back to having more energy or feeling fewer side effects. Not saying it's the case for everyone, of course.

My opinion, being supportive in a general kind of way is so helpful. Everyone's path is pretty individual and some suggestions will work, some won't. It's kind of up to the person in the ring to decide what is best for them in addition to conventional therapy.

I hope this thread continues to be a gentle, kind circle of support to our DIS friend @Mizzoufan

 

[mom2rtk]

Thanks for the update Mizzoufan, even if you didn't have anything to update.

I thought about you all weekend.

 

[kimblebee]

Good points.
My dh has serious neurological disease. When you are dealing with something that is not likely to be cured it's different than a condition or disease that might be cured or in remission for a significant length of time.
Diet/complimentary therapies can help make one feel better. Another benefit is being a little mindful about one's diet can sometimes help with keeping other possible health issue in better check.

At the end of the day, though, many neurological conditions are treated with medications. Some are easier to take than others. It's not easy keeping up with them, adjusting as needed or adding new ones. Infusions can sometimes wear you out and it may take a bit of time to get back to having more energy or feeling fewer side effects. Not saying it's the case for everyone, of course.

My opinion, being supportive in a general kind of way is so helpful. Everyone's path is pretty individual and some suggestions will work, some won't. It's kind of up to the person in the ring to decide what is best for them in addition to conventional therapy.

I hope this thread continues to be a gentle, kind circle of support to our DIS friend @Mizzoufan

This is a GREAT response and it shows you really understand what people are going through.

I am two weeks away from doing a new treatment. I am only the second person in my province who is going to be doing it. It's an infusion once a day (8-5!) that is going to kill my immune system and hopefully have a healthy one regenerate. I am scared to do it but I have no other options.

Anyway, this isn't about me. I hope you have a good day @Mizzoufan. We're still all right beside you

 

[Kitty 34]

This is a GREAT response and it shows you really understand what people are going through.

I am two weeks away from doing a new treatment. I am only the second person in my province who is going to be doing it. It's an infusion once a day (8-5!) that is going to kill my immune system and hopefully have a healthy one regenerate. I am scared to do it but I have no other options.

Anyway, this isn't about me. I hope you have a good day @Mizzoufan. We're still all right beside you

Good luck to you, Kimblebee.

 

[Pea-n-Me]

Good points.

Thank you.

My dh has serious neurological disease. When you are dealing with something that is not likely to be cured it's different than a condition or disease that might be cured or in remission for a significant length of time.
Diet/complimentary therapies can help make one feel better. Another benefit is being a little mindful about one's diet can sometimes help with keeping other possible health issue in better check.

At the end of the day, though, many neurological conditions are treated with medications. Some are easier to take than others. It's not easy keeping up with them, adjusting as needed or adding new ones. Infusions can sometimes wear you out and it may take a bit of time to get back to having more energy or feeling fewer side effects. Not saying it's the case for everyone, of course.

Although I've had breast cancer myself, I've worked with patients who have the types of illnesses you describe for the past thirty years, so I get that, too.

My opinion, being supportive in a general kind of way is so helpful. Everyone's path is pretty individual and some suggestions will work, some won't. It's kind of up to the person in the ring to decide what is best for them in addition to conventional therapy.

I hope this thread continues to be a gentle, kind circle of support to our DIS friend @Mizzoufan

I hope so too.

 

[cabanafrau]

I can only offer prayers and send good thoughts for healthy mind and body your way.

 

[Mizzoufan]

I think today is my last day of my steroid treatment. Then we will do a MRI tomorrow to see if the lesions have shrunk any. Then go from there. Super tired today. Thank for your support <3 and prayers.

 

[BrianL]

Best wishes to you, Mizzoufan! The Dis community is here for you.

 

[Mizzoufan]

I think Physical therapy is going to kill me SO hard not to be able to do the smallest things anymore

 

[anniemae]

I think Physical therapy is going to kill me SO hard not to be able to do the smallest things anymore

I know things are hard, but you have to accept your new normal. It will take time, but you will get there. I know what it is like when your body betrays you. It is beyond frustrating. You are doing great and you will get through this. Do you have a good support system?

 

[Mizzoufan]

I know things are hard, but you have to accept your new normal. It will take time, but you will get there. I know what it is like when your body betrays you. It is beyond frustrating. You are doing great and you will get through this. Do you have a good support system?

Yes, my family is here with me. Just so frustrating. Things that my 2 year old neice can do I can't do yet.

 

[kimblebee]

Yes, my family is here with me. Just so frustrating. Things that my 2 year old neice can do I can't do yet.

Totally relateable. You will find things you can't do the way you used to. You just have to find a new way to do them that works for you. It will be a long period of adjustment..don't think you have to adjust all at once.

There will be days where your biggest goal for the day is to do a load of laundry (my goal for today) and that's ok. Some days you won't be able to get up to have a shower and that's ok too. Every day is different and you will adjust to it.

You mentioned lesions..are they confirmed lesions or just a guess at this point?

If you get the words MS as the diagnosis take time to be mad, sad, scared..all of it. Rely on your family and friends for support too. We're all here for you.

 

[Mizzoufan]

I decided aganist sharing with everyone.

 

[Mizzoufan]

Now we know you're Jenny.

Hi Jenny, nice to meet you

Could you please delete the link I had second thoughts

 

[TLSnell1981]

Could you please delete the link I had second thoughts

I don't blame you. There are lots of creepy folks out there and too many do not have good intentions.

 

[Mizzoufan]

My neuro dr is nice enough but he doesn't listen to me. HE trying to hard to be a cheerleader instead of hearing me out.

 

[KathyTX]

REMINDER: Fundraising or any kind of requests for monetary support are not allowed here.

Thank you.

 

[kimblebee]

REMINDER: Fundraising or any kind of requests for monetary support are not allowed here.

Thank you.

SOrry..thanks for editing my post.