Tag Archives: #StrongerThanMS

Understanding Multiple Sclerosis

Understanding MS therapies and the importance of staying on it. Treating your MS is of course a very individual and personal decision that should never be judged but education is key as there are many misconceptions. Course Therapy Info

Such as this common one…”I still feel terrible and I’ve had some new/active lesions, it’s not working so I might as well just stop taking it.” In reality, your MRI could’ve been 10x worse had you not been on a dmd.

1) Must allow at least 6mo-1yr to recognize the effectiveness of your dmd.

2) It’s common to develop a false expectation, believe that in order for the medication to be working we must “see/feel” results. In fact, the opposite is true. They work in the background but often times symptoms become permanent from the damage so other medications may be needed to treat the symptoms themselves. However it is possible to actually “feel better” while on therapy, it’s not a guarantee as everyone reacts differently to treatment.

3) It is important to realize that not seeing an “increase” in relapses means your DMD is most likely effectively treating your MS. Educate yourself on DMD options before making any decisions.  

4) Knowing the difference between true relapse vs symptom flares or pseudo flares.
• With a true relapse there is lesion/disease activity (detected via MRI. With a symptom flare there is typically no lesion activity, disease progression. More info here  

5) Having a relapse while on therapy does not automatically mean that your therapy has “failed” you. DMD’s are meant to slow disease progression, reducing relapses means lessening not stopping altogether, that would be closer to a cure which we do not have just yet.

6) Your physician will need to do an assessment to determine patterns, lesion activity, history of relapses as a whole all of that information is taken into consideration when determining if a patient should in fact begin Solumedrol iv steroid treatment or Acthar Gel  (self injection steroid therapy) and in fact a possible dmd change. *Don’t get discouraged and/or make any decisions without first consulting with your Neurologist.

7) When deciding which DMD is the best (for you), your Neurologist will use your medical and medication history as well as your most recent MRI results and labs. With their assessment they will typically recommend a few options to consider from out of the current 15 approved therapies.

8) It’s your call at that point which one you decide to put into your body. They will give you literature to go over, also be sure to do as much research as possible on your own. While it’s also great to hear about others personal experiences and/or opinions, be sure to keep in mind that no two patients are alike so don’t put too much weight on them. We have try them for ourselves and we must go in with an open and positive mind, sometimes it can make it that much harder when you hear how negative it was for 30 people and positive it was for 30 others.

9) There is absolutely pain associated with MS. Muscle pain, nerve pain etc  MS PAIN don’t let any physician make you feel crazy.

Ice, Heat, Massage, Topical lotions, pain meds, anti inflammatories, muscle relaxers & MMJ is very helpful.   

Topricin “Heaven in a Jar” 

Biofreeze

Types of Multiple Sclerosis 

Locate an MS Neurologist

Supplements are great but it’s important to understand they can have interactions with other drugs and conditions as well. Always consult with your physician before starting or adding to your daily regimen. They may need to draw labs to check levels prior to starting vitamins such as Vit D3, B12, iron etc to ensure the proper amount is taken as there is a such thing as too high which can be toxic.

High Potency Biotin Protocol for MS *speak with physician prior. A study was done and has shown that High dose Biotin (300 mg daily) can be effective in helping to not only slow disease progression but also repair/reverse some of the damage. It has shown efficacy in patients with progressive MS, acting by increasing a route of cellular energy production, protecting against the breakdown of nerve cell axons while also activating enzymes that are setting the pace on myelin repair. *as with anything, results will vary.  

Recommendation: High potency Biotin 300mg, Alpha Lipoic Acid 300mg & Bio Flora Probiotic. I have found this 3 pack kit to be the most efficient and affordable. The combination has proven to be good for MS damage, symptoms, repair, pain, healthy gut and more.

If you only want to try High dose Biotin this is sold single, high dose 100k mcg=100mg x3 300mg

*dosage is also personal preference, 300 mg is only the recommended daily dose for the high dose protocol. Be sure to check the mcg on the bottle prior to purchasing, 100mg capsules are 100,000, if you get less you just have to take more pills. 

-> -> I’m tired...reatable post

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*Disclosure: I am not a medical professional, my knowledge is from being a patient. Any information is from my own personal experience and/or collected from legitimate sources. I do not earn any money by posting the links within this article, it’s for ease of the reader to do further research as needed. 

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I am tired…

Open letter to my love…

I am tired. I know you try to understand. You see me go to sleep, you see me wake up. Each and every day is a struggle for me in some other way. Today I might have a hard time holding my head up. Tomorrow I might have a hard time bending over to pick up something I have dropped, and I will drop something often. I am tired. I am tired of being held captive by the monsters that have my mind and body in their steely grip. I never know what kind of day it’s going to be, and I never know what I may be able to accomplish today if anything at all. I may not always be able to think clearly enough to help you with things or the girls with their homework, remember to pay a bill or sometimes even pay one twice! I may forget to stir the food on the stove or take it out of the oven and maybe it will burn. Of course you understand so this will never bother you but it upsets me, because I feel that I’m not doing a good job of taking care of you. I am tired. I am tired of smiling and pretending that everything is okay when inside I feel like crying. At times I hide my deepest feelings inside myself because there’s nothing you can do and I don’t want you suffering for me, this is one thing you just can’t fix. I love that you take the time to understand how difficult each day, each task is for me. Although I am tired of fighting a battle that I feel we may never win, we can’t and won’t stop. I do the very best that I can every day, still not ahead. It feels at times that its never enough. It costs precious energy that I cannot spare to keep fighting and I’d rather save that energy so that I can spend time with you. It might not be a lot of time, but I try to make it quality happy time. I try not to complain, no matter how much pain I may be in or how tired I am. But I am so very tired… I am tired of being sick. I wish that things could go back to the way they were before but I know they can’t. I am sorry I’m not the person you used to know or the happy fun mom that I used to be. No matter how hard I try, that person is lost. All you have left is the person who fights to remain strong, the person that sometimes needs help for the smallest of tasks, the person who has now become your fight too. I’m so grateful that you still look at me with that same loving stare, can laugh at my dumb jokes, are the best husband/father ever and just love me unconditionally. I am just so very tired and…I know you are too. We are tired. I am so happy that we at least have each other to be forever happily tired…together.

~Stacey 

Understanding Chronic Illness 

Just Krazed – Just for Fun in a Krazed World


More personal look at Stacey

A more personal look at Stacey…

I don’t dwell on my issues, that has never helped. The things I’ve endured in life, mine and my families struggles haven’t broken me, they’ve only made me that much stronger and more understanding.

My conditions do not and will never define ME however they will always be a part of me and I’m ready to share that part. ~Stacey 💞

Stacey’s Journey

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For me there are so~so days, bad days, really bad & then my OHH MY HOLY HELL days….Stacey

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Thank you for taking a few minutes to learn a little bit more…about me. It’s not all of me but a major part. They took a lot from me over the years and I had always wanted to do something where I could bring more of myself back while helping others. That is where most of the ideas for this page were born.☺️💞

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Always remember~You’re never alone with us!

Love & Gentle Hugs, Stacey 

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