11 years and MS fatigue seems to be worst ever

My name is Sheila and im having a hard time with fatigue, seems it is worst now than when I first got all my problems. Happen to any one else.

[melack01]

Lately my fatigue has been worse, but between depression and a new medication I'm not sure where to point the finger.

[Morllyn]

I have/had kind of two types of fatigue Hidden . One was a terrible fatigue, that I had for 20 years or more, that happened every morning when I woke up. I felt as if I hadn't slept and couldn't get going until early afternoon. My doctor put me on Ritalin and it worked but it made my blood pressure go up. Then he tried Provigile and it started working right away. I now feel normal in the mornings! The other fatigue gets worse during stressful times, which can be physical or mentally stressful times.

Talk with your doctor, see if he thinks one of those might help you.

[ssdw1958 in reply to Morllyn]

Thanks for the info.

[Juleigh21]

Hidden fatigue... it's the worst! I really thought when my career ended b/c of fatigue, I wouldn't have as much of it. It still hits me almost every single day. I don't want to take more pills but some days I have no choice. Afternoons are the worst. I hate having appointments after lunch😕.

[gatorman15]

Skippy02 I can relate to the fatigue. My doctor suggested Modafinil for the for the fatigue. Has been helping. The heat doesn't help but looking forward to the Fall temps in a big way

[Kevin_McMillan]

Skippy02 I have serious fatigue issues like you! I take a little time to get going after getting up but most of the time I wake up fatigued and I'm back in bed in 4hrs.. I'm sleeping my whole afternoon away and sometimes evenings, I wake up for a couple hrs., then back to sleep! It's a great time!

I'm sorry you're having a terrible time with the fatigue, it is so debilitating! Get better soon! I have not had much success with meds., meither has my brother!

[Nom_De_Plume in reply to Kevin_McMillan]

@Kevin_McMillen I am sorry to hear that both you and you brother have MS. May I ask if you're twins?

Blessings,

Lisa

[Kevin_McMillan in reply to Nom_De_Plume]

Lisa,

Yes my Brother and I are identical twins, I'm 7 min. Younger. We have so many of the same symptoms too!

[Nom_De_Plume in reply to Kevin_McMillan]

Kevin_McMillan

I am sorry that both of you have MS.

I am glad, on the other hand, that you have each other for support on what can be a difficult journey.

I am sure scientists clamor around you two to better understand the genetic components of MS.

I once worked on an NIH study of WWII veteran twin brothers. It was really interesting.

I would be interested to hear what you think about the theory that MS is a purely genetic disease? Do you think that is true and/or do you think other factors are involved?

May I ask if you have other relatives with MS too?

Thank you. I hope that's not too intrusive. 😯 I don't think I've ever known identical twins with MS.

[Kevin_McMillan in reply to Nom_De_Plume]

Nom_De_Plume

Let's get something straight, you can ask me anything! 😉 My father was in Vietnam, he was in the jungle and remebered having agent orange rain on them and the morter holes they bathed in had it floating on top. My dad died from Multiple Myeloma cancer. I went to an AO town Hall, Veterans were doing a nationwide tour, they are trying to get MS approved for children of Vetrans with AO right now no DR's will support it. The Dr's in Oregon suck anyway. I Think their has to be some predisposition there, Then something triggers it. Some people may never triggered it. My dad has a cousin with ms, her Dr isn't very good either I guess. A Dr my brother spoke with that used to work for the veterans in Seattle, he said a lot of the vietnam veterans used to tell him about their kids and their ms problems or unknow/undiagnosed neurological problems. There is a family that is friends with a person my brother met, the kids grew up 15 miles from us and the Dad is a Vietnam vet.. The son and daughter are 2 years apart and just like my brother and I. They have not been doagnosed yet.

You can ask me anything, don't hesitate. Thank you!

[Nom_De_Plume in reply to Kevin_McMillan]

Kevin_McMillan

Wow ... and thank you for allowing me to ask you questions.

1) Has anyone ever approached you and your brother, from the research community, and asked to learn more about your unique circumstances? I'm just curious to know if it's on anyone's research "radar" to study this.

2) I tend to agree that there is "some predisposition there, then something triggers it," versus the "its all genetics" theory.

3) That is very interesting about Agent Orange, and so sad. I'm sorry to hear about your Dad's AO exposure and subsequent MM. 😥 I certainly hope MS will be approved for children of Veterans with AO. It makes me angry that they have to work so hard for it.

The family with the son and daughter that are "just like my brother and I. They have not been diagnosed yet," ... I imagine you're saying that they have neurological issues and they are being "worked up," right?

Thank you for sharing and I'm sorry your family has endured this!

Lisa

[Kevin_McMillan in reply to Nom_De_Plume]

Lisa,

Nobody has approached us for anything to do with our neurological problems, I even contacted "The Docters" TV show and never heard back.

It sounds like we agree on #2. I have read where mono can trigger it. Thank you about my Dad, that was a nasty cancer!

Yes, the siblings like us are going to some bad Drs. And have not been Dx'd yet, they are in limbo being monitored.

Thank you Lisa, anything else or if I haven't been clear enough ask away. I can't always explain myself very good! Sorry! Have a great night.

Kevin

[Hidden]

I have had MS for ten years and I feel my fatigue is getting worse also. August 16,2017 I have a brain and spinal cord MRI. My doctor feels I had another MS attack. The heat dose not help when dealing with MS

[MarkUpnorth]

Did many of the drugs for fatigue for years. ProVigil, NuVigil....they helped, maybe?, from such things as nearly falling asleep at the wheel during morning rush hour stop and go.....to the can't do anything days. Major nutritional improvements did more than anything else (long term, no quick fix though). Certain sativas (type strains of medical canabis) also work much better than ProVigil /Nuvigil, but can't drive days used. It allows me to get work around the house done! Also, can walk about twice my norm. 10K/20K steps / day.

I used to hardly get anything done due to fatigue. A couple thousand steps used to be a miracle day. Nutrition crazy now, 10K steps is my daily goal. Can't run because of balance, But, I can walk! The more you walk, the better you feel. But it took a couple years and very strong determination to get to this point. But you can do it! I refused to use a wheel chair. Have to use my multi-purpose tool (cane), but now I cane it like an athlete, almost! Still fatigue mentally quickly. But I can walk! Even if mentally like the walking dead!

[Fattius]

You're definitely not alone here recently I was passed in The Walking Dead and I'm not going to be on the TV show

[Hidden]

Thanks for your reply

[Nom_De_Plume]

@Kevin_McMillan

Hey Kevin,

You're explaining yourself just fine! I appreciate your openness.

Have you known other identical twins with MS?

I am floored that, with all the MS research being done, there isn't an identical twin "registry" of sorts. Maybe there is one and they're just unaware of you. I should check.

I have often felt that there should be a longitudinal study at least of MS patients. Included in that, at a minimum, I would like to see:

-blood specimens for long-term storage and future testing once the science behind the disease is better understood.

-Genome sequencing could be done.

-Identical twins would be a study subset.

-and I'd really like to explore patient's recollections of environmental toxin exposure, medical hx, and any theories the patient has for what made them sick. That may sound silly, but I think there is value in considering the patients' gut feelings about the origin of their disease. I think it could offer some very interesting clues, don't you?

BTW, Howard Weiner's group (Boston BWH) is doing a longitudinal study (CLIMB), but it doesn't include much of this. I am in it and the follow-up is also pretty poor. Disappointed.

Anyway, enough about that! 😀

Lisa