Archive for the ‘Research’ Category

 Update: this is why I don’t get my hopes up. Just found out this is another media hype or as I like to call it a hoax. It’s very sad playing with us like this.

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I won’t hold my breath, but please make it so!

Always hoping

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Breakthrough in multiple sclerosis research as scientists discover possible cause of the disease

 Scientists found a protein called Rab32 in the brains of people with MS

Telegraph Reporters

24 April 2017 • 12:01am

British scientists have discovered a potential cause for multiple sclerosis, in a major breakthrough that could pave the way for new treatments for the disease.

Scientists have found a new cellular mechanism which may cause the autoimmune disorder. Multiple sclerosis affects around 2.5 million people around the world.

Typically, people are diagnosed in their 20s and 30s, and it is more common in women than men.

Although the cause has so far been a mystery, the disease causes the body’s own immune system to attack myelin – the fatty “sheaths” which protect nerves in the brain and spinal cord.

This leads to brain damage, a reduction in blood supply and oxygen and the formation of lesions in the body.

Our exciting new findings have uncovered a new avenue for researchers to explore. It is a critical step, and in time, we hope it might lead to effective new treatments for MSProfessor Paul Eggleton

Symptoms can be wide-ranging, and can include muscle spasms, mobility problems, pain, fatigue, and problems with speech.

Scientists have long suspected that mitochondria, the energy-creating “powerhouse” of the cell, plays a link in causing multiple sclerosis.

Using human brain tissue samples, researchers at the Universities of Exeter and Alberta found a protein called Rab32 is present in large quantities in the brains of people with MS – but is virtually absent in healthy brain cells.

Where Rab32 is present, the team discovered that a part of the cell which stores calcium gets too close to the mitochondria.

The resulting miscommunication with the calcium supply triggers the mitochondria to misbehave, ultimately causing toxicity for brain cells in people with MS.

Researchers do not yet know what causes an unwelcome influx of Rab32 but they believe the defect could originate at the base of the celThe finding will enable scientists to search for effective treatments that target Rab32 and embark on determining whether there are other proteins which could pay a role in triggering MS.

Professor Paul Eggleton, of the University of Exeter Medical School, said: “Multiple sclerosis can have a devastating impact on people’s lives, affecting mobility, speech, mental ability and more.

“So far, all medicine can offer is treatment and therapy for the symptoms – as we do not yet know the precise causes, research has been limited.

“Our exciting new findings have uncovered a new avenue for researchers to explore. It is a critical step, and in time, we hope it might lead to effective new treatments for MS.

The research has been published as part of MS Awareness Week. Dr David Schley, from the MS Society, said: “No-one knows for sure why people develop MS and we welcome any research that increases our understanding of how to stop it.

“There are currently no treatments available for many of the more than 100,000 people in the UK who live with this challenging and unpredictable condition.

“We want people with MS to have a range of treatments to choose from, and be able to get the right treatment at the right time.”

Trish Deykin, who suffers from MS, welcomed the research.

She said: “Finding a cause will help everyone who has MS – even if that’s just knowing more about what’s going on in their own brains.”

The paper, Rab32 connects ER stress to mitochondrial defects in multiple sclerosis, is published in the journal Neuroinflammation.

To start off, I must say that this blog is based on my PPMS and my experience with it. While some may dis-agree, please do so in an adult manner. I will not downplay your feelings, so please do not downplay mine. With that being said…here goes.

At this point there is NO cure for Multiple Sclerosis! None, nada, zip. Eating healthy and living a clean lifestyle will help, but it will not cure. There are medications to slow the progression, but not stop or cure it. This year a new medication is being released [finally] to deal with the progressive forms of MS. While this is excellent news, it won’t do much for me as significant damage has already been done to my body.

A ‘cure’ in my eyes will be able to help all types of MS, not just the least severe forms. It will also be able to replace the myelin and help to restore nerve functions. That is a cure. While stem cell research has shown to halt MS, there are no long term stats yet to show it will stay that way. But, I will say, if I could afford it i’d be all over it. The sad part is I may not even qualify for HSCT due to the severity of my damage. So, in my eyes, not even close to a cure. A cure should be able to help everyone with the disease. IMHO… which isn’t so humble.

I believe in a cure… But, until people see humans as more important than money, we won’t see the cure! There is no ‘profit’ in a cure. And that is the sad reality!

Always hoping

Always hoping

Peace!!

Thanksgiving is tomorrow, what are you thankful for? Are you thankful for family, friends, wealth, or health? [if you have any of those things] 😛

Well, here is my take on Thanksgiving… [read at your own risk]

Columbus discovers America. [didn’t know you could discover a place already inhabited] He sent word home to send more people over. It’s a great land. More people come, but ‘uh oh’, they start dying from starvation, cold, disease. The people, who already lived here, [Indians] step in and teach the people to hunt, grow fields, keep warm, etc. Well, WOO HOO, send more people over we are saved!!

The people [white man, pilgrims] are thankful and [supposedly according to the history books] throw a feast fit for Kings. Thanksgiving!! [thanks for giving?] All is good in the World… for a little while.

I guess it is true, survival of the fittest, only the strong survive, etc. Well the ‘people’ were so thankful that eventually their greed took over and they decided they wanted the land all to themselves. Now they showed their thanks by slaughtering a culture of people. [Indians]  hmmmm just doesn’t sound right to me. But hey, isn’t that how it’s always been. We go in and take what we want. They gave, the people took. And they/we call it Indian giving…

To sum it up, we [people] came over, started to croak. They [Indians] came to our aid and saved us. [people] In the end we [people] showed our thanks by giving some land to them [Indians, when it was their land first] then took it back [And they/we call it Indian giving] and killed them [Indians] so we could have the land all to ourselves.

hehehe

I know this isn’t your typical Thanksgiving blog and sorry if it offends anyone. [not] I guess we can get past the true history of the Holiday and give thanks for the now and what we have. I am thankful for my family and friends, everyday, not just on Thanksgiving. To me, it’s just another day in the year, a day we can outwardly acknowledge our thanks. But, at what cost…

Happy Thanksgiving…

PEACE!

Can you help, will you help…

This is a link to their story. Sisters seek brother who was adopted in 1971

I know there are times that maybe adoptees do not want to be found. I do not believe this is one of those times. I feel, in my heart, that he would love to know how missed and loved he has been for so long.

This is a New Year, one that I hope will bring a family back together. Siblings are the most important part of a family unit. Let’s help these sisters find this piece of the puzzle that has been missing for so long.

 

xx, Tracy...

 

 

IF there was a way to cure my progressive MS and/or control it, I’d have been the first one to find it!! There is NO cure for MS. Yes, it can be controlled, remission in Relapsing Remitting MS [rrms] Yes, the right diet, exercise etc is good for me and everyone else. Sorry, I cannot exercise like everyone else. I have to use a motorized pedaler for my legs. I CANNOT pedal without help!

Protein shakes, diet shakes, whatever you wanna call em are NOT real food. They are processed ingredients. Whey protein is dairy based, and in my research the less the dairy, the better I feel. [less dairy is better for people with MS] Aspartame, Stevia, Splenda not good! What do you think makes their appearance white, bleach! Our bodies need real sugars, good sugars, raw sugar. It really is common sense. Things man made are not natural and do not belong in our bodies. I believe food is a big part of all the disease in our world today. You can go with me or not on this one, I do not care. I’ve done the research, hours and hours of it.

I’m jazzed if putting this crap in your MS filled body works for you, but do not tell others they can ‘heal’ their bodies by doing it. Shakes will not your body heal!! Especially if part of your miraculous discovery goes along with someone buying this product off of you. RRMS people can be in remission forever, there is no telling why or how, it just happens. I pray that they remain there and this lifestyle works for them. But do not ‘sell’ false hopes to others.

Again, I’ve done the research and eaten the RIGHT foods with minimal exercise, lost the weight and felt tons better. But, for some of my MS symptoms, I need the medication. Do, I want it, no. It’s a necessity. I tried going off of all of them and almost took my own life. No shake or workout is going to heal my progressive form of MS. I do appreciate the thought of ‘go check this out’ but not when the advertising gets dangerous.

So please people, do your research, find the best route for you, but do not act as though it is the only route. And inevitably, if they want you to try the product and they receive some kick back….well, nuff said!

Soapbox off!

Blessings and Hope!!

SMACK!!! That’s what it felt like for me when I was told I had MS. Fear, anger, depression, confusion, why, why, why, and a whole bunch more expletive feelings which I will not mention! 😛

I see so many around the net with their well meaning advice to MS newbies. The problem is they are putting their MS on everyone else. Meaning, what happened to them will surely happen to you. And, yes, similar things may happen, but never the exact same.

I watched a video one day and the woman said that MS IS a progressive disease and at some point all will progress! Sorry, BULLSHIT! There are people who have MS and never ‘relapse’ or progress. They can stay in remission and never have another attack. This is the type of information that can send a newbie into a very quick state of depression.

We are all different in our MS as we are in our lives. No two people will have the same exact journey with their MS. It may be similar at times, but never the same.

My advice to newbies, listen to no one, not even me! lol Do your research, talk to your doctor, look into the medications to see if they are right for you. Research, research, research.

What I will say straight out, eat right [no more sugar free, no processed foods, etc], light exercise, yoga for MS, contact your local MS Society, find an MS counselor. My counselor, Margo, has helped me through many a hard time in the past 11 years. Find out about the medications, study up on them.

For me, and only me, I no longer do any injections. There was no proof they helped progressive forms. For me, and only me, the side effects were not worth it. I do however take medications for pain [yes MS can cause pain] and depression/anxiety. I did injections for 7.5-8 years. Since being off of them for 4 years now, I do feel better. BUT, that is my journey and it may not be yours!

You may never end up in a wheel-chariot, you may never need walking devices. So, do not let others scare you. Get your information on your own and never let anyone tell you what you need to do for your MS journey.

I wish you…

Blessings and Hope…

My mini disclaimer: These blogs are from my perspective of my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.