Hello family. It's Fancy. I've had a rough few weeks going on on this end. My MS flared something awful. I experienced Seven Falls in 10 days. I have no energy and I felt very, very weak. I also started to have pain for the first time ever with my MS. . This was not something I was looking forward to.
So I paid a visit to the new neurologist I told him what was up. He asked how long I've been on ocrevus and when I told him it was two years. He immediately pulled me off of ocrevus. So much for that. The drug I hoped was going to become my wonder drug fell through the holes and let me down. . . My neurologist put me on a brand new DMT that was approved in the last 8 to 10 onths. It is called Mayzent. It is one of the very news DMTs and the only one that specifically targets secondary progressive MS.
So today I'm spending the day at University of Kentucky hospital. Jumping through hoops and doing multiple tests that I need to have before I can start Mayzent. So far today, I've had an electric cardiogram done. Make sure my heart is beating normally. Giving blood for a multitude of blood test. And last but not least I'll spend the next several hours doing three separate MRI of the head. The Nick and the spine with and without contrast. What a day. . It's gloomy and nasty outside with snow coming in tonight. And temperatures dropping like a rock. So I guess that's a little consolation because I sure wouldn't want to be outside today. I'll keep you informed and let you know how things progress. The best guess estimate I've been given Is I've got at least three weeks before I can start the new DMT. And if I fail one test which is a chromosome test that shows how my liver functions, I want not be able to even take Mayzent.
It's a brand new DMT, I will be sure to keep you informed as much as I can on it. . That's my scoop for now. Take care. And remember together we are stronger. ! Fancy.
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Fancy1959
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I am also on Ocrevus, since February 2018. My next infusion is at the end of this month. But your pain comment caught my eye. A couple of weeks ago, it started with a sharp pain in my right knee. I started to wear a brace on it, and it has subsided a bit. Then a couple of days ago, I felt as if my lower back would give out. Hot compresses did help. Then my buttocks and hips felt like I fell on them. Now, my upper back is sore, and I have a headache. Is Ocrevus to blame? Hmmm.
Best to you and Mayzent and please keep us informed in any development
Idk, but I often think...what will they do with that info? And then will I want to then do what they recommend? I.e. MRI? Steroids...steroids ...steroids? 😬
I have not had NEW symptoms but an increase in EXISTING symptoms while on ocrevus. I have been on ocrevus 2 years. I love the twice a year infusions compared to injections but it is not helping with progression.
Last years mri's showed no new lesions. If this April's mri's also show no new lesions, I imagine that may confirm spms? I have been reading up on Mayzent in case neuro suggests a change in dmt's.
Talk to your doctor and see what it says. . Audiologist said that when you reach secondary Progressive like I am you don't always show me lesions on the MRI. He simply have. Episodes where your disability increases and you feel weak and puny. And that is a sign that things aren't going as well as they should be. . I had over two years of MRIS. Sexual no changes and their relations for me and I was so excited that ocrevus was doing its job. But then this happened. . Fancy.
Carol make sure you keep a log of all the changes you're experiencing and pain is rated and put it down as well. . I'm not sure that you can attribute the pain to ocrevus. I think it's just part of the package or on those people that have MS. . It messes with your nerves and messes with your communication throughout your body. And that simply makes a lot of people. Experience anything from mild to excessive pain. Thanks for your concern. Take care. . Fancy.
Do you know how it is? You just don't feel like you're sick like the flu, but you just feel. Puny and weak. It's been about the same now for the past 10 days. . Thanks for asking. Fancy.
Yes, I know how it is. All that I can say is, getting better does take time, and I am hoping that you are on the road to recovery. Sending you gentle vHug, and vSmiles to you, Fancy1959 However, if you don't feel like you're getting better, let you healthcare provider know
I would have your back checked out before blaming Ocrevus. It sounds like your spine is out of alignment. It can cause all of those symptoms you described.
I think that you're right, hairbrain4 I did take it easy, and am doing daily back stretches. Today, I am feeling that my back is not quite a sore as it was last week. And I agree, you cannot blame every little ache on your DMT or 'ms', but that doesn't mean that you shouldn't let your doctor know about them. They are there to assist you in managing your health... Keep Smiling
Hello Fancy, sorry to hear that you’re going through this. What was you on before Ocrevus? I hope everything works out for you and you can start your new DMT drug. Keep us informed.
Roy I was on t tysabri before ocrevus But I was JC virus positive and was starting to have nasty little things happen to me after the infusion was finished. . I got scared and left it because of PML. Fancy.
Thanks for the thought. I hope it works out as well. I can feel the Good Vibes. From all the chatroom members and it feels good and helps lighten the load more than you will ever understand. . Fancy.
I am sorry that the high hopes you had for Ocrevus have been hit in the head but I hope that you are able to take Mayzent. Keep us informed as to your progress. Blessings Jimeka 🤗
"Seven Falls!" I always wanted to see them, up in the Yukon? Or was it the B.C. (British Columbia)?.... Oh! Not those kind? Sorry. And really sorry for what you're going through. The No Energy, Weakness just like an old Gumby? Trying to climb a cliff to get out of a jungle....How about on top of all the other stuff like the right one doesn't these days, lean a bit left, and OMG, I have to go again?
No, seriously, Fatigue was without a doubt my #1 for years and years. So I can sympathize. It only got worse, and worse, and worse as time went along. Tried all the drugs. (No, none of the fun ones.) One works like this, and one like that, just like in the . Each helped a bit, for a bit. Then when there were no more that worked at all, I simply went "comatose"! For a couple+ years!?! Why not? Yeah, but that was a tough fight getting out of that. NO, I was not on ANY drugs, M.S., or otherwise during those wonderful years. Prior to that my Neuro's had said no more DMT's for me, I had done them all back then, I couldn't tolerate any of the DMT's any more. But, I hope you have better luck. I tried, and tried, and tried.
I too have a new DMT. Well not new, its been years now! but it's the one that pulled me out of my "coma". You heard me say it before. (Yeah, too much already). It's all about what you eat. Sounds dumb, right? But seriously. There's enough other people with M.S., or that, all saying the same thing. Doctor's too.! Not just the one with M.S. that wrote a bunch of books.
Okay, it's starting to sound like I should be getting paid to do this???
BUT, Now can anyone tell me why I can't loose any weight? Yes I know it's all about calories in.....and calories burned....but....
And, If you find out where the "Seven Falls" is located, let me know. Who knows, I may still be able to see them? No I can't climb a mountain any more. But, Feeling better every day! Fighting the Fatigue with Food!
For weight loss? That's probably it, I'm not. I'm doing a daily intermittent fasting thing, trying to keep all meals within an 8 hour window. But that means no breakfast for me. And now, I need that breakfast. I did well on juicing fruits and veggies till dinner for years to keep from going essentially comatose everyday, but slowly worked in fiber via vita-mixing in lieu of juicing, then added in small amounts of lean meats and fish to a heavy veggie meal. Problem is, even though it is a healthy diet, if you eat too much, and exercise too little, walking 10K steps is good, but if you love to eat, you will not loose weight. Since I took up cooking....And Since it's winter, exercise is down, walking limited to mall walking, or pushing a shopping cart around, but eating....well that's the problem? I'm not overweight, but I'd like to get back down 10 pounds, back to were I was last summer. So, there's the challenge. You can over eat eating healthy too! Don't believe you can't.
Stay away from all processed foods to be healthy. And there are many days every week with nothing other than veggies. Okay, cheese is a downfall. I've done well with cheese. It does not bother me. A few sprinkles of shredded or crumbled this or that on the salad, skips the need for any type of dressing, such as drizzled EVOO,.... Or some recipes just wouldn't be the same without the cheese.
No I don't use American, or any of the many other processed cheeses. But a touch of Bleu is to die for now and then.
Yes, I know, calories are calories. And even though they are low, I can eat a whole lot of veggies, including the carbalicous ones, like squashes, sweet potatoes.... And the soups....like the butternut squash, apple, onion....(autumn harvest soup), is all natural, and fattening.
Mark perhaps I have not put enough emphasis on the diet that I'm falling but I do and watch what I'm eating and try to keep only the good things at hand. I'm glad you're coming out of your coma and I hope if I get any results from this maze isn't he gets back to a different neurologist who hasn't given up on you and ask about some of the newer DMT.s .
I guess my mountain that I intend to climb is to get back to riding horses. . Up to post about that here in the near future so you can see what I'm doing. Thanks for your thoughts, caring, and concern. I'm hit with wave after wave of Good Vibes and they really do help when my thoughts turned gloomy. I know a lot of people are pulling for me. . Take care, and thanks for being here like everyone else. . Fancy.
The getting better eating right is a long process. Just like there's no magic pill, there's no magic food. BUT, long term healthy eating avoiding all the chemical additives in processed foods will do a body good. Combined with exercise, I started using a cane to move my right half, then balance for many years. There's no magic pill, DMT, or food. But, how many doctors. Researchers,...are reporting the same thing....eating real food may be what we are missing? And example after example tends to support that thought.
Hello Fancy1959...sorry you’re going through all this and hope you were not seriously injured from the falls. Hope you also get the green light for Mayzent! Blessings 🕊
I don't belt as good as I used to but it seems like I'm still holding. Most of my holding most of my bones together. Despite my repetitive falls. I did break my ankle. Early last fall and then proceeded to walk on it for the next 6 to 7 weeks. My doctor didn't understand that Ms. Patients don't have a lot of feelings sometimes in their extremities. And I didn't really hurt when I walked on it. . But it made it a very bad break and I wandered past the head of surgery and a plate with eight screws put in my ankle. . So now I have a bionic right side with metal and both my ankle and my right shoulder. Look out Six Million Dollar Man, here I come. Fancy.
O Fancy, I am so sorry you had to go through all of that. I hope You didn’t get hurt with all those falls. That’s a heck of a way to find out it’s time for a new DMT. I sure hope the Mayzent works for you. Please heal up and keep us posted. Lynn
I guess everything went as well as could be expected when one sets in an MRI tube for almost 3 hours. . It was miserable, but it's over. . I tried to relax just up there, but somehow my restless legs didn't get the message and kept jerking so they got tied down and then they still jerked. The result was my hip my knees my legs and my back were killing me. by the time I got out there. Like I said, it is over though. Hooray. Fancy.
I think your advice relax was priceless and I tried really really hard to do just that. Somehow my legs didn't get the message. . They continue to jerk and move. With the Free Will of Their Own. Restless leg is a pain in the backside. . Take care, and thanks again for thinking of me and sending Good Vibes my way. . Fancy.
Keep your chin up!! I've read about Mayzent, I have asthma and Ocervus is not for the weak in lungs. I hope you start to feeling better! It is nasty out!! I love in Indy, and it's snowing and cold!!
I'm trying my hardest to do exactly what you advise and keep my chin up. . Some days it's easy and some days. It's almost impossible to do so. . Thanks for the well wishes, and I will keep everybody informed on how the Mayzent Goes if and when I get on it. . Take care. . Fancy.
All the luck I can get at this point. . I've crossed my fingers. I've crossed my toes have even crossed my legs in my arm. I hope that luck carries the day and the new DMT works great for me. . Take care Thanks for the well wishes. Fancy.
ok now stop falling! like we can help it!my hubby would say that .I truly hope new med is your answer,this darn ms. can be challenging.I try to remember that we do get notice when things get worse,there are some folks with other things that have no idea.best to you
Oh Pam, how I wish it were that easy just simply command my body to stop falling and to have it happen. I too, hope the new DMT works well for me. Thanks for thinking of me. . Take care. Fancy.
Thank you for thinking of me. . I also hope the new DMT does the job for me. Take care of yourself. I will keep you informed. Of how the Mayzenþ works for me. Fancy.
Thanks for the prayers being sent for me including yours. The big guy. Upstairs can't help but hear them with so many set to help me pull out of this Set back. . Take care. . Fancy.
What Would I do without the wonderful friends and family members? I have made through this chat room. Your emotional support and good thoughts and prayers. Come at me in waves and I can feel the carrying in the understanding. . And it makes me feel so good. Thanks for taking the time to think about me and pray for me. . It surely does help. ! Take care. . Fancy.
I have been blessed with so many people praying for me that I can actually feel the waves of Good Tidings and blessings coming my way. . You take care of yourself as well. And I'll be sure to keep everyone informed of how the Mayzent goes. Fancy.
I've gotten the go ahead to start Mayzent. I have to be off gilenya for one month. Then I will be able to start the Mayzent. I ws approved for the 2mg. So I guess I will start on March 1st. It did seem I had to jump through hoops but at least I didn't have to have an ecg or eye test since I had those for Gilenya.
It's very exciting to know someone else we starting this journey on Mayzent with me. I've been off ocrevus for a long time now since the last time I was infused was back in May of 2019. . I did the genetic testing today. How to see how my liver is able to Dissipate the medicine that comes into it. They said it will be somewhere between 10 days and two weeks before I find out the results from the genetic testing I did today. . I've also done my electrocardiogram and they have set me up with their eye doctors for a 4 Hour eye exam. Yay, I can't wait. . So once the genetic testing is back and I figure out if I could take the DMT and what those I'll take it at I should be ready to go. . Keep in touch and I'll do the same. Then we can share our experiences with the chat room. So they have a better understanding of this new DMT called Mayzent. Take care, and I hope to talk to you soon. . Fancy.
Okay, I' m way overdo for my eye exam; putting it on tommorow's "to do" list! So many appointments can be so overwheming for us, Godspeed and be blessed
Yes, we're here to help and learn from one another!
I try to go ahead and make my appt. While I am there for the next one. Sometimes I have to change the date but they always remind me in advance so if I need to change it I can.
Ocrevus did the opposite for me than what others I've spoke to at doctors office. I had trouble with the first 1/2 doses but doctor still had me try the full dose. That was a year ago and I have only gone down since then. I have been in and out of the hospital, multiple falls, bumps and bruises, speech problems, memory issues and extreme fatigue. It's been rough and after a year waiting for it to completely get out of my system and approval and tests to start next meds I am finally starting my new meds. We chose a drug that's been around and is oral in case I need to get it out of my system quicker. I have started Gilynia and so far side effects are minor but not sure if it's the "one " yet.....
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