health · healthcare · hope · medical · medications · multiple sclerosis · primary progressive MS · Research · Wheelchair

DMD – Disease Modifying Drugs

When I was first diagnosed in August 1997, there were only three DMDs available; the ABC drugs – Avonex, Betaseron, Copaxone. Being primary progressive none of the medications were actually for me, but we tried Avonex hoping to slow the progression. Alas, it did not work. Then when Rebif came out, we tried that. Nope, nada, nil. Finally when Tysabri came out I got on that immediately and it seemed to be working. Unfortunately it was not nice to my liver and I had to stop taking it. 😪

What I want people to understand is that these medications are there to hopefully slow and/or stop the progression. They will not repair your myelin, they will not make you walk again. People do notice a placebo effect and think that because they’re on the medication that’s why they are walking again etc.. While that is awesome, it’s also not the case.  What these medications do is, hopefully, suppress our over active immune systems and halt the progression. So any improvement, is all YOU and your awesome strength fighting the MonSter that is MS! 💪🏻

msdamage

As you can see from the picture above our immune system eats away at the Myelin thinking that it’s bad and in its own way protecting us.  If all goes well with the DMD will stop that from happening. At this time there is no other way except for these medications too slow and/or stop the progression of the disease.

HSCT – Hematopoietic Stem Cell Transplantation, is looking very promising. I’m hoping at some point it will be available for all of the types of MS. To follow the Journey of another amazing MS Warrior, check out this blog, Making Sense Of M.S.

I am now in the process of discussing two medications with my neurologist, Ocrevus and Lemtrada. I have to be very careful because of the fact they suppress the immune system. Because of my urostomy, as I’ve mentioned before, I have constant bladder infections. So when these medications suppress my immune system it puts me at a very high risk of sepsis. So, I’m not taking any of this lightly, but I really want my progression to slow and if possible stop. If I find something bad is starting to happen then I will stop the medication, but I’m very hopeful that one of these will work. For me the benefits outweigh the risks.

I see all the time how people are going ‘med free’ and that scares me. I fully believe in a good healthy lifestyle [diet] exercise and all the that goes with that, but that will not change the progression of your disease. I hear people say that they’re out of their wheelchair[s] now etc. following this diet or that diet. And that’s awesome, but what’s happening is they’re [most likely] in remission, but the disease is still in the background doing its thing.  If you’re choosing this route, just please be careful. Make sure you get your MRIs when needed and keep your doctor in the loop. Better to be safe than sorry.

I cannot wait for the day when I read, we have found a cure for MS! I just pray it happens in my lifetime!

Until then, this is what I think of MS;

pissonms

Have Courage and be kind! ♥️

anger · health · medications · multiple sclerosis · primary progressive MS · Ramblings · Research · strength · stupid_stuff

Fighting through…

I’ve been trying to figure out a way how to approach leaving the rehab facility and continuing on at home. Sad to say, the ball was dropped once I left. I truly feel like I was just a body to fill a bed. Since being home, (March 23) I’ve had exactly four in-home physical therapy sessions. I’ve seen the pain management/rehab doctor twice and was told I would have more rehab appointments. No one has called to set those up, and when I call, I never get a return call.  So I am taking the bull by the horns, so to speak, by bustin’ my own ass at home. I wear my Velcro arm weights and do arm exercises daily. I’m doing my best to strengthen my core. And when my husband feels like it, he helps move my legs around for me.

Right now I’m dealing with another wonderful bacterial infection in my bladder and kidneys. Because of the bowel section they used to build my urostomy there’s always a little bacteria that ends up in my bladder. I’m not gonna lie, I think it’s stupid AF that they use part of the bowel knowing it has bacteria and can cause problems. I’m not sure why they didn’t choose another way to build the urostomy. hmmmm I was told by having the urostomy done it would stop my infections etc. Well slap me silly and call me stupid, but it’s made it worse. I have to take a daily antibiotic, Nitrofurantoin, twice daily every day for the rest of my life. Last year I had bladder stones and kidney stones which were all surgically removed. When my urologist went through my stoma with a camera it was like looking at rocky beach inside my bladder. She said she’d never seen so many bladder stones. The removal of those wasn’t that hard. A tube was inserted through the stoma and they were vacuumed out. The kidney stones were a whole nother story. I went in for an outpatient procedure to place the tube into my left kidney which would stay there for five days and then they would vacuum those out. I ended up staying in the hospital for five days. Then when they went in to take out the kidney stones, they could not remove all of them so the tube had to stay in my back for another five days. Unfortunately it caused me a lot of problems and constantly leaked, so for the five days I had to be put into a nursing Center. When I finally had the procedure to remove the kidney stones, all was well. But alas, I have more bladder stones and kidney stones yet again. So what, do I have to have surgery every year to remove these? I feel like I get two steps forward and I’m thrown four or 10 steps back.

unhappy
I know my newest bacterial infection is due, yet again, to the wonderful piece of bowel in my urostomy. Then of course, since things don’t always go as planned, Walgreens where I get my prescriptions fucked up. LOL my prescription for Augmentin was called in on Friday. On Monday I called Walgreens as it seemed to be taking quite some time. They said they were out of stock and would be getting it in the next day on the shipment. So I called the next day and was told they weren’t getting any at all. That my doctor wanted the name brand and they do not carry the name brand. They said they would call my doctor and see if I can use the generic! Okay… why the fuck didn’t they do that in the first place and call me. Meanwhile I’m feeling awful! I went to the doctor because I knew my fatigue and sheer feeling like I was dying was not due to my MS. Not everything is MS!! So I kind of needed this medication right away. I was curious as to why no one called to let me know this. And of course dead air on the other end of the phone. To make a long story short, I finally had enough and yesterday, Wednesday, I called Rite Aid and they called Walgreens and within an hour I had my medication. We have used Walgreens for forever, but since the main pharmacist left a little over a year ago the service has been crap. So now, buh-bye Walgreens!

I will say that my new outlook, trying to keep the positivity floating, helped me through the situation. I didn’t lose my shit, too much. I just chalked it up as another little bump in the road that I would get through. I really believe it helped me to not feel worse by causing me added amount of stress. I will always find a way to make it through the rain. We must remain strong in times of trouble. We must have courage to keep fighting! Those are the markings of the true warrior!

strenght4

Always remember to have courage and be kind!

health · health insurance · hope · medical · multiple sclerosis · primary progressive MS · Research

Possible Multiple Sclerosis Breakthrough…Not

 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.

Depression · health · hope · multiple sclerosis · primary progressive MS · Ramblings · Research · sadness · strength · Wheelchair

MS and a Cure?!

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!!

Holiday · Ramblings · RANDOM · Research · sarcasm

Happy Thanksgiving!

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!

family · hope · love · new year · RANDOM · Research

Sisters missing a brother they never got to know…

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...

 

 

health · healthcare · multiple sclerosis · Paleolithic Diet · Ramblings · Research · SoapBox

On the soapbox…

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!!