You should be unhappy

[MMMMS]

Do you ever encounter people who think that you should be unhappy because you have MS? Or those who tell you that you're better than you think you are?

I've had a few people comment that they're surprised at how well I deal with MS. It's probably because they assume I will inevitably end up in a wheelchair. When I tell people I have MS, they are shocked. They have no understanding of MS that doesn't look like Annette's MS.

It seems as though people without MS think that living with it would be impossible. And more, our society seems to view disability as the worse than death.

Of course there are others who think that any disability we do have could be overcome if we just tried hard enough, and we're just using MS as an excuse.

It's a ridiculous situation when the MS making us less unhappy than the attitude of others is. Find someone with MS and try to make them feel worse by marveling that they aren't miserable with such an awful fate or accusing them of not trying hard enough. Those seems like noble pursuits. 🤣

How is an MSer to win? 🙂

[marti]

Kind of like... "damned if you do, damned if you don't". When I was dx I didn't have a clue what MS really was. I'd heard of it, but had no idea what it was. For awhile I thought it was a disease of the muscles. Someone set me straight on that right away. I guess this is where MS Awareness comes in. I freaked a little at first.. but then I just learned to live with it, study, read, ask questions. I drove my doctor crazy at first. Actually, I still do. These online contacts with your doctor are great. You can bother them all you want!!

But anyway, over the years I have made a lot of people aware of MS through my experiences and the MS WALK etc. Have brought in a lot of money for research. My own family is understanding and supportive. Yes, some of my neighbors and friends are almost a little too concerned about me. But sometimes that is a blessing. When I am too dizzy to drive I always have someone around who I can turn to for a ride. They check on me (especially since Sam died) and are really nice.

I don't project the attitude of being unhappy with my fate. I try to keep going normally. Sometimes I fail. Other times I do all right. I have friends who have other disabilities and now I can understand their problems better. So many of them are facing a much worse future than I am. Take it as it comes. Do the best you can. Right??

[Jules A]

It's probably because they assume I will inevitably end up in a wheelchair. When I tell people I have MS, they are shocked. They have no understanding of MS that doesn't look like Annette's MS.

But in all fairness and consideration for our sisters and brothers who have had it rough, are in wheelchairs or like Annette, RIP, I think it would be worth adding "always" in between the bolded words above.

Personally I think the pendulum has swung a bit too far in the opposite direction. Although I am so grateful that we have treatment choices now but I have to wonder if even those of us with this miserable disease are touting that we won't end up in wheelchairs or incapacitated like so many I have known what is the impetus for research and better treatments?

[MMMMS]

I wrote it that way, because they don't know that MS ever looks different from Annette's case. When I tell people I have MS, they are surprised that you can have MS and not limp, walk with a cane, or need a wheelchair.

I think the efforts to raise awareness maybe used to emphasize MS at it's most extreme to get people to understand that we need more research. That left people with the impression that everyone always has that level of disability.

I think you're right - if we go too far the other way with the message, peop,e will think that it's not bad at all and no further research is needed. It's hard to describe MS in a lot of words. It's impossible, I guess, in a short awareness campaign ad.

But in all fairness and consideration for our sisters and brothers who have had it rough, are in wheelchairs or like Annette, RIP, I think it would be worth adding "always" in between the bolded words above.

Personally I think the pendulum has swung a bit too far in the opposite direction. Although I am so grateful that we have treatment choices now but I have to wonder if even those of us with this miserable disease are touting that we won't end up in wheelchairs or incapacitated like so many I have known what is the impetus for research and better treatments?

[Jules A]

I wrote it that way, because they don't know that MS ever looks different from Annette's case. When I tell people I have MS, they are surprised that you can have MS and not limp, walk with a cane, or need a wheelchair.

I think the efforts to raise awareness maybe used to emphasize MS at it's most extreme to get people to understand that we need more research. That left people with the impression that everyone always has that level of disability.

I think you're right - if we go too far the other way with the message, peop,e will think that it's not bad at all and no further research is needed. It's hard to describe MS in a lot of words. It's impossible, I guess, in a short awareness campaign ad.

There really is no one-size fits all with MS is there? I am cautiously optimistic at what the future brings for those who will be diagnosed in 10 or 20 years as we really have had a flurry of positive activity at least on the medication front.

[MMMMS]

Me, too. I hope I live long enough to find out what the cause is, even if it wouldn't help me. Do you know if they're close to getting a definite answer? I know there are risk factors, but I haven't seen anything that named a cause.

There really is no one-size fits all with MS is there? I am cautiously optimistic at what the future brings for those who will be diagnosed in 10 or 20 years as we really have had a flurry of positive activity at least on the medication front.

[MyGirlsMom]

Interesting discussion. I think there is a range of opinions out there on MS, based on perceptions....from “MS is really bad and you will be in a wheel chair” to people that view MS as “not a big deal as they know such and such person who is doing really well and you can’t even tell they have MS.”

This disease is so difficult to for others to understand (and quite frankly even ourselves to understand) as each person’s MS presents differently and symptoms can be invisible.

People that have lived with someone with MS seem to have a better understanding than those who just know someone as a casual friend or co-worker. And honestly, most people that know me couldn’t tell I had MS or if they knew thought I “managed it well.” (Yes, that is a direct quote from several people but I had to leave my job last year so I guess I am not managing it to well anymore.)

I am trying to live more in the present and not worry so much about what others think....this is a tough one for me but I am slowly (ibeit very slowly) getting there.

(If his post doesn’t make sense or has typos, just roll with me...sigh...thanks.) 😔

[Jules A]

Interesting discussion. I think there is a range of opinions out there on MS, based on perceptions....from “MS is really bad and you will be in a wheel chair” to people that view MS as “not a big deal as they know such and such person who is doing really well and you can’t even tell they have MS.”

This disease is so difficult to for others to understand (and quite frankly even ourselves to understand) as each person’s MS presents differently and symptoms can be invisible.

People that have lived with someone with MS seem to have a better understanding than those who just know someone as a casual friend or co-worker. And honestly, most people that know me couldn’t tell I had MS or if they knew thought I “managed it well.” (Yes, that is a direct quote from several people but I had to leave my job last year so I guess I am not managing it to well anymore.)

I am trying to live more in the present and not worry so much about what others think....this is a tough one for me but I am slowly (ibeit very slowly) getting there.

(If his post doesn’t make sense or has typos, just roll with me...sigh...thanks.) 😔

It does make sense and I am glad to hear you are trying to live in the present, tough one, right??

The thing with MS is it's only benign until its not. Until we are finished with this lifetime no true way to predict what the future will bring which is probably the most unnerving aspect for me. Although again no true guarantees for those without MS either, we just have more writing on the wall I guess.

[Jules A]

Me, too. I hope I live long enough to find out what the cause is, even if it wouldn't help me. Do you know if they're close to getting a definite answer? I know there are risk factors, but I haven't seen anything that named a cause.

I don't anticipate this kind of a home run during our lifetime or near future. They haven't found a cure for breast cancer or HIV which I have to assume have been studied more in depth and with far more research dollars. The brain and nervous system are so complicated I'm hopeful for more and better treatments, provided the medical and social community doesn't feel like we have it all wrapped up, but not a cure.

[Mamabug]

I don't anticipate this kind of a home run during our lifetime or near future. They haven't found a cure for breast cancer or HIV which I have to assume have been studied more in depth and with far more research dollars. The brain and nervous system are so complicated I'm hopeful for more and better treatments, provided the medical and social community doesn't feel like we have it all wrapped up, but not a cure.

I agree. I also don't anticipate a cure in my lifetime.

I might be somewhat cynical, but, I tend to believe that, since it is generally the drug companies that fund research, a cure likely isn't even being sought very diligently. There is too much profit in treating the disease with DMD's, rather than curing it.

[Jules A]

I agree. I also don't anticipate a cure in my lifetime.

I might be somewhat cynical, but, I tend to believe that, since it is generally the drug companies that fund research, a cure likely isn't even being sought very diligently. There is too much profit in treating the disease with DMD's, rather than curing it.

Agree 100% about the pharmaceutical companies but not for the research physicians who have dedicated their careers working for a fancy, well known teaching hospital, usually for relatively low wages. I do believe they are still trying I'm just not confident it will happen at least not for decades.

[Mamabug]

Agree 100% about the pharmaceutical companies but not for the research physicians who have dedicated their careers working for a fancy, well known teaching hospital, usually for relatively low wages. I do believe they are still trying I'm just not confident it will happen at least not for decades.

Yes; I think we are on the same page. I also believe that many research physicians are dedicated to research. It's not the research physicians, likely, that make the funding decisions about research.

[Boudreaux]

Of course there are others who think that any disability we do have could be overcome if we just tried hard enough, and we're just using MS as an excuse.

It's both my excuse and my reason. My reason for getting out of bed at 0430, driving 70 miles to the gym (around the corner from work) putting in a full days work, often running or doing yoga at lunch time and training after work. It's the reason for the disciplined diet. It's my way of fighting. Its my excuse to prioritize my health over other things. Sorry but I can't do that I have to get my miles in or go to the gym or get my rest.

How is an MSer to win? 🙂

By living your life the way you want to. Pay no attention to the haters.

[Myoak]

Me, too. I hope I live long enough to find out what the cause is, even if it wouldn't help me. Do you know if they're close to getting a definite answer? I know there are risk factors, but I haven't seen anything that named a cause.

The direct cause of MS appears to be Epstein Barr Virus. Although not everyone with EBV infection develops MS, a group of people having an improper immune response to EBV does develop MS.

Low vitamin D, smoking, and other risk factors, sometimes, contribute to the possibility of developing MS in those who have had an improper immune response to EBV infection.

It appears MS begins right there.

I'm going to cut and paste a couple comments in posts I have made over the past few years. The Charcot Project is a thread which contains a great deal more detail about the EBV theory and developing treatments.

Epstein Barr Virus - The Cause of Multiple Sclerosis

Journal of Applied Mathematics and Physics, 2016, 4, 1042-1053 Published Online June 2016 in SciRes.

http://file.scirp.org/pdf/JAMP_2016061314500533.pdf

Quote, “A particular aspect of our study is the identification of Epstein-Barr Virus (EBV) as the cause of multiple sclerosis. Since without an infection by Epstein-Barr Virus (EBV) no multiple sclerosis develops and due to the fact that there is a highly significant causal relationship between Epstein-Barr Virus (EBV) and multiple sclerosis, we are allowed to deduce that Epstein-Barr Virus (EBV) is not only a cause but the cause of Multiple Sclerosis (MS).” End Quote.

There are a ton of scholarly articles and studies linking EBV and MS.
You could google “Multiple Sclerosis and EBV: Relapsing Together”. Another good one is, “Activation of MSRV-Type Endogenous Retroviruses during Infectious Mononucleosis and Epstein-Barr Virus Latency: The Missing Link with Multiple Sclerosis?”

The study above says that EBV can activate replication of HERV (human endogenous retro viruses, these make up about 8% of the human genome)) even when EBV is latent. That means, you don't need an active infection of EBV to develop MS, only that you had an EBV infection sometime in the past, even though you may have been unaware of it at the time.

Studies show that EBV promotes genomic instability. HERV are imbedded in our genome; HERV are part of our DNA. Just a note… all herpes viruses, of which EBV is one can trigger HERV expression but EBV is particularly effective in activating HERVs. Just to be clear... EBV, even in an inactive state (latent) promotes HERV replication.

It appears that EBV infection, an improper immune response to it, and ensuing HERV replication begin a cascade of events resulting in MS. Risk factors contribute, also.

Of course, there are tremendously difficult challenges for an immune system affected by MS. The approved MS DMTs attempt to alleviate some of them with varying degrees of success and varying degrees of side effects, also.

Dr. Peter Stys uses analogy of a train wreck to explain what is happening in MS.

https://multiple-sclerosis-research....crash-analogy/

There are treatments and medicines presently in trial directly affecting EBV and HERV. These are talked about in the Charcot Project thread, if you are interested.

I agree that research identifying cause and cure will most likely come from those looking for them, not those not looking (pharma).

Those searching include smaller groups, somewhat independent researchers like Pender in Australia, Gavin Giovannoni's group in London, universities around the world, and perhaps, disease societies like the NMSS, even though the disease societies seem (to me) somewhat compromised by large donations from pharma.

I totally agree that pharma is profit-minded and as such, is focused as the business of monetizing drugs for the treatment of MS. I concur that identifying the cause and cure is outside their purview. It is not a matter of them being sinful; it is a matter of recognizing they are run as businesses, not benevolent charities.

That said, the world awaits more effective meds for MS with fewer side effects, and I believe we will most certainly see a couple in the very near future, perhaps 4 years.

MS treatment could be greatly altered within 5 years, and much, much improved.

[Jules A]

It's both my excuse and my reason. My reason for getting out of bed at 0430, driving 70 miles to the gym (around the corner from work) putting in a full days work, often running or doing yoga at lunch time and training after work. It's the reason for the disciplined diet. It's my way of fighting. Its my excuse to prioritize my health over other things.

I so admire your busy schedule, focus on good health and discipline. I hope you are able to continue it for as long as your heart desires.