Multiple Sclerosis

[pooh4evr]

MIZ-ZOU!! We are a Tiger family in STL-
My DH has MS, he was diagnosed in 2008, when he was 35. He began his journey with the diagnosis, followed by a week long hospital stay, and like you high doses of IV steroids for 2 weeks. His first big episode was at that time. He couldn't walk, sight was blurry, sideways, jumpy and out of focus; which lead to headaches, dizziness and so on. He was out of work for about a month. We had the eye Dr make him a sort of patch to wear on his glasses which put things into focus when he had them on.
Since then he has NOT had ANY major relapses. He began his treatments right away, His first med was Avonex, which is a weekly shot. All of the interferon bases meds make the patient feel like they have the flu for about 24 hours after the dose. (aches, chills, ..). He stayed on that until last spring when he started rebif, which is similar to avonex but is a 3 times a week shot. He also has yearly MRIs. His lesions are still there, there are a couple of new ones too. Overall he has been VERY VERY lucky. To look and talk to him you would not know he is "sick" at all. His biggest problem is extreme fatigue. I can usually tell when he is feeling bad, but I tell him he has to tell me because i don't know if I can be mad at him because he is being "man lazy" or MS tired.. . As of today, he has NO outward signs of anything (maybe all his gray hair, but that could be from our 3 girls too) He leads a very happy and full life (he has me afterall) Heat does effect him a little at times. He is an MD, works A lot, exercises (runs and lifts weights), his diet isnt as good as it should be..
Anyway. my advice as a "caregiver" is to keep fighting, keep going, never give up. DH's mom couldn't believe that he didn't just curl up and give up. Well, that is NOT an option. We joke about stuff a lot, HAVE A SENSE OF HUMOR. There is a lot of info out there, books upon books, theories and treatments galore. There is also A LOT of new and VERY promising research with possible treatment /cures on the horizon. The main things to help NOW, are exercise, and diet, and attitude! You will be OK, it is scary, overwhelming and shocking. Please let me know if I can help in anyway! One thing that helped Dh a lot at the beginning, was going to national MS society meetings! Find a meeting close to you for newly diagnosed people, it will help to see and talk to other people going through the same things as you. You are NOT alone!

 

[minneylovesmicky]

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.

My main reason for poo pooing the diet aspect is - I have seen the hope and desperation in the eyes of a MS suffer, I have seen them push and push themselves to eat foods they hated because "this will make me better" to make it work, only to have it all fall apart and not work.

I have literally picked them up off the ground after trying new diets or medications, I have sat with them all night, with them in tears after realising it wasn't working for them.

I have done this for years, I wish it was simply as easy as "change your diet" but it isn't, it just simply isn't.

Everyone is different, I accept that, but when offering a "you beaut" diet that you think may help, you must add that it will not work for every one and that it very rarely works at all, yes try it, but just don't get your hopes up.

I was being supportive with my comments, I just am not one to build false hope, I have seen enough hope drain from ones eyes to know that it is wrong to build it up in the first place. If that makes me a horrible person, then so be it, I would rather be a realistic person, that a person who builds false hope in others.

 

[Mizzoufan]

I enjoy reading each and everyone stories. It helps me so much. Thanks again

 

[wilkeliza]

Hi Mizzoufan just wanted to send you well wishes.

I have a complicated connection to MS. Years ago now my cousin was diagnosed with MS and our family went all in on support including walks, runs, stair climbs, research studies everything. She had many many ups and downs. Now she claims to be misdiagnosed with MS because a new set of doctors didn't agree with the previous findings and said it was something else. I'm not 100% what is going on any more because it is hard to keep up. The only think I can say form the experience I've had with it is to be your own advocate but don't go out expecting a magical cure or for things to always be amazing. I unfortunately think my cousin couldn't sit with the idea of no cure and maintenance and still having rough days so she went down the rabbit hole of looking for anything and everything that her issues may be caused by. Even with a difference diagnosis her life is the same I think she was just scared of the words MS since she has 4 children ranging in ages.

 

[Mizzoufan]

I like the idea of finding a support group. Maybe an online one and actual one

 

[kimblebee]

Hi Mizzoufan just wanted to send you well wishes.

I have a complicated connection to MS. Years ago now my cousin was diagnosed with MS and our family went all in on support including walks, runs, stair climbs, research studies everything. She had many many ups and downs. Now she claims to be misdiagnosed with MS because a new set of doctors didn't agree with the previous findings and said it was something else. I'm not 100% what is going on any more because it is hard to keep up. The only think I can say form the experience I've had with it is to be your own advocate but don't go out expecting a magical cure or for things to always be amazing. I unfortunately think my cousin couldn't sit with the idea of no cure and maintenance and still having rough days so she went down the rabbit hole of looking for anything and everything that her issues may be caused by. Even with a difference diagnosis her life is the same I think she was just scared of the words MS since she has 4 children ranging in ages.

It is very difficult living with something that affects you daily and knowing there's no cure.

 

[TLSnell1981]

It is very difficult living with something that affects you daily and knowing there's no cure.

It's sucks, but the upside...it's not terminal. I prefer to stay positive and count my blessings.

 

[anniemae]

How is today? Any news?

 

[kimblebee]

It's sucks, but the up side...it's not terminal. I prefer to stay positive and count my blessings.

True. Like my dad says..at least you're on the right side of the grass.

 

[gwynne]

It is very difficult living with something that affects you daily and knowing there's no cure.

I think it takes time to gradually adjust. One thing that has helped dh and me is to remember that we are learning new ways to do things, seeking advice when needed, it's a new process. Another is we've learned to really appreciate the medical folks who are there to help him along the way. The physicians, pharmacists, PA's, nurses and physical therapists committed to challenging years of study that brought them to this day. This day when they can offer some suggestions, adjustments and advice to him. We are so appreciative of that!

It's sucks, but the up side...it's not terminal. I prefer to stay positive and count my blessings.

Well, I don't think it's either you're "positive" or you are not. You can count your blessings and still be adjusting and learning.
It's not something that most folks can get their head around quickly. And that's OK.

 

[Simba's Mom]

It is very difficult living with something that affects you daily and knowing there's no cure.

Boy, don't I know that! And I really appreciate your saying that because I've so often gotten mad at myself -"Why are you having a touch time when it isn't terminal?"

 

[Liberty Belle]

They did a Lumbar puncture that was fun not. Headache big time. I'm a extreme high dosage of steroids.

I had a headache from a spinal. It's not fun. Especially on top of everything else.

You must be very scared. I don't know much about MS, but I do know several people who have it and they've had it for many many years. They are at varying degrees of mobility, but all seem to be functioning well and living full lives.

Did you legs go numb quickly? Any tingling, etc? Have they ruled out things like Guillain-Barre?

 

[kimblebee]

I had a headache from a spinal. It's not fun. Especially on top of everything else.

You must be very scared. I don't know much about MS, but I do know several people who have it and they've had it for many many years. They are at varying degrees of mobility, but all seem to be functioning well and living full lives.

Did you legs go numb quickly? Any tingling, etc? Have they ruled out things like Guillain-Barre?

I'm not the OP but I can try and explain the numbness.

You know when you sit on your foot or leg too long and it falls asleep? Not just tingly but dead dead? It's so asleep that you can't control it and it just flops around until the feeling comes back? That's what the numbness in the legs/arms feel like, except the feeling may not come back for a week, a month, never.

I'm not trying to be a drama queen..we learn to deal with it. But, that's what it feels like. You see your hand closed around a fork but you have no sensation of it being in your hand.

 

[wishesuponastar]

Said a prayer for you OP. Hugs

 

[Liberty Belle]

I'm not the OP but I can try and explain the numbness.

You know when you sit on your foot or leg too long and it falls asleep? Not just tingly but dead dead? It's so asleep that you can't control it and it just flops around until the feeling comes back? That's what the numbness in the legs/arms feel like, except the feeling may not come back for a week, a month, never.

I'm not trying to be a drama queen..we learn to deal with it. But, that's what it feels like. You see your hand closed around a fork but you have no sensation of it being in your hand.

That sounds very scary.

 

[kimblebee]

That sounds very scary.

It is, but I've had almost 20 years of getting used to it. I still hate it, it's so frustrating, but I've learned how to work around it. Just like the OP will figure things out in her own time.

 

[TLSnell1981]

True. Like my dad says..at least you're on the right side of the grass.

 

[Mizzoufan]

I'm home so tired. Just trying to rest. I have a follow up MRI in a couple of weeks. Thanks again for all the prayers and well wishes.

 

[mom2rtk]

I'm home so tired. Just trying to rest. I have a follow up MRI in a couple of weeks. Thanks again for all the prayers and well wishes.

Continued prayers.

So glad you can rest at home now.

 

[bellebud]

Glad you're home now. Sending positive thoughts and prayers .