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.
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
*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.
I started Ocrevus!
1st 1/2 dose infusion today, yay! Last 2 nights I pre medicated w/Zyrtec and will do so for the next 3 nights, hydrated with tons of water.💦 Day of-drank more water, arrived at clinic and first Solumedrol is given (partial dose IV), Benadryl (injection) & (2) Tylenols (oral), Saline is run for a bit to clear the line then Ocrevus starts. Slow drip at first, BP & temp are monitored every 1/2 hr. 2hrs in drip speed bumped up. ~3.5 hrs in, still doing great, Ocrevus done infusing!🙌🏻 Bag of saline runs during 1hr monitor phase. 4.5 hrs total-done! Home resting now but feeling well, no negative reactions. *2nd 1/2 dose June 28th. At this time this is my final option, all my eggs in Ocrevus basket.😉 Will update my progress for those interested. Good luck to all! Warrior On!♡
*Update: Day after, I don’t want to jinx myself lol but need to share…I feel amazeee balls today!♡
Read: I am Tired
Ok so I’m overwhelmed, as many of you may know I suffer from medical conditions that limit my normal everyday activities. One that I never thought they would interfere with is my ability to keep a clean, neat & tidy home. Along with my other issues I also suffer from OCD so how could that happen right? OCD is obsessive compulsive disorder, common misconception is that everything around us is always perfect. On the contrary, over the last few years my conditions took a turn and spiraled out of control. When I wasn’t hospitalized I was bedridden, the mess does go on though. Unable to organize or clean instead I watched the untidy mess build up around me and struggled instead with worsening of my anxiety. Although unable to physically take care of things I still obsessed over it all. Unfortunately and fortunately (for them) I suppose lol my daughters do not suffer from OCD so they are ok with it all. They used to be so helpful, growing up they had their chore charts and eventually just knew what to do and took care of it. It was a good beginning teaching them values and responsibilities. As they got older however they suddenly forgot how to do basically everything. Suddenly I’m missing flatware, dinnerware, Tupperware, cookware any type of “ware” they took the easy way out and either tossed or hid it! Whaaat? I know tell me about it, it drives me crazy and I wonder 1 where is my stuff and 2 what the hell is wrong with them?? Who does that? Well let me tell you, entitled BRATS that’s who. They’re older, all I started expecting of them now is to just keep their rooms clean. When I say their rooms I mean our rooms we let them use. Our girls are now 20, 18 & 14 we’ve dedicated our lives to them and their well being and happiness but we find out now that they feel they’ve “done their time”. (the “adults” that is) Uhh 🙄 oh boy. Ok ladies, if this is prison to you and helping your disabled mom is so difficult well then hey, your prison terms have ended so you are FREE! Ohh you don’t mean it in “that way” ha of course you don’t. Free room & board, free food, transport etc. right why would you mean it “that way”? Ha so I’m a mom here to say “I am over it”! Over being disrespected and made to feel less than. I literally “DID MY TIME” you bratty adult children. Get your acts together because things won’t continue on this path. I’ve hired people to clean my home, yup with 3 healthy able bodied daughters too I had no choice. This is my life. They will not be booted, they will have access to their rooms and that’s it. I will not pick up after them or pay too either. If you can relate to this, I’m so sorry. If you can’t, hang on tight and express your expectations to your children as it will be in their best interest to not only learn values & responsibilities but to continue them through life. Don’t let your kids walk on you, it hurts.
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I think many people including myself tend to get more stressed during the holidays and whether we realize it or not social media plays a big part in representing falsities.
It is so very important to remember that what you see on social media is NOT always a true reality for a person. I myself for example, well I used to be Queen Bee of Christmas, I loved everything about it, all aspects were always on point. I’d have all my gifts bought and wrapped by Thanksgiving, food, desserts etc planned and done. Christmas music blaring and decorating done and done. I had a system and nothing would mess with it. Granted it doesn’t sound as pleasant but it really was I had a ton of jolly mixed in lol it was “my perfect”.
Once I began getting sick many years ago it became much more difficult and little by little just as with everything else I felt as if I was losing part of who/what I once was. Now, I just do what I can, how I can without putting as much emphasis on what was or what others do. I used to beat myself up over it but I’ve had to learn (heck I’m still learning) to just go with MY own flow and I now know it’s OK. 👌🏻
Back to social media, I’ve had many people in my life that have been super understanding when it comes to my illnesses vs my capabilities and then there are those that will never truly get it. The ones that will see a photo on Facebook and comment “omg wow you look great, it’s so nice to see you feeling better yada yada”. I never understood that, how do people ones you don’t talk to often even think they can gauge how another “feels” or how their life is going from pictures on Facebook, Twitter, Instagram etc.
I didn’t know wth was going through their minds until that is…I caught myself doing it. Maybe not to that extent but I still did it. Even the times when I’ve admittedly felt (literally seconds) a twinge of jealousy upon seeing something on social media whether I know them or not and that’s wrong because I don’t know their circumstances. Usually for me it’s as simple as seeing their “clean house” lol. So yeah, I suddenly realized how easy it is to do.
I do know however that looks in general can be so very deceiving. Heck most times it’s really just all about placement. I’ll be the first to admit that I definitely do not always have a spotless home or one as organized as I’d prefer it to be but I mean I’m not gonna take and post a pic in front of the laundry, pile of empty boxes or stack of dirty dishes lol. Therefore in photos my house “seems” just as great but in reality I made my daughters scooch to the left or edited a pic of myself & hubby to avoid an eye sore lol.
Life wasn’t meant to be perfect, we all have something or another going on. I’m just here to say…ITS OK! Really it is…so just breathe! Relax and enjoy life without adding extra unescessary stress to it.
Should a mess or the fact that your Christmas doesn’t “look” as good as someone else’s you see even factor into your daily stress? Hellll NO! Focus your energy on positive things such as the blessings in life…family, friends etc.
We are all doing GREAT in our own way! We cannot compare but instead just give ourselves a pat on the back for a job well done!🙌🏻
Remind yourself that YOU are doing the best you can and will only improve as you go. You don’t need to be better than anyone, only better than the person YOU were yesterday.😉 You got this!