Possible PML From A Multiple Sclerosis Medication
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- čas přidán 11. 09. 2024
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Living with a disease like MS can be tough and sometimes the medication can make things worse. I had to get tested for Progressive Multifocal Leukoencephalopathy due to recent seizures and high JCV virus levels.
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Your positivity is amazing. I wish I felt the same! Thank you for making this video. ❤
I’m so glad to hear you overcome all the challenges you had to face!!! It’s enough having to go through the day facing MS symptoms, having so many other little things going on, it’s awful. My symptoms haven’t been an easy path, but none of the meds I have tried have made things easy, quite the opposite. I’m starting Kesimpta soon, but if the side effects are consistent with what I have been through in the last 3 years, I’m going to have to try Abagio too. Please update us on how you feeling nowadays?? ❤
Hello Sara, what a relief that your test for PML came back negative and that you got the all clear for other viruses and diseases!! ♥️ This is something that a lot of people don't seem to understand is that having the day to day physical struggles with MS is one thing but the emotional toll is a mighty one! Having to have and wait for scan results puts you in a place of perpetual conflicting emotions whereby you feel detached from everyday life as the mind grapples with what lurks in the shadows of one's thoughts. There are times when I feel as if I am being tossed in a raging storm as I try and cling to something positive but the undertow of reality can force me under. Then it's a struggle to swim to the surface to catch one's breath. All storms will pass but how many actually hear us and reach out? I went to my low vision clinic today where I confronted a shattered dream that my sight would have improved but the window has long since closed. I used an electronic magnifier so as to read, disarming to say the least as I never thought I would have been challenged in this way. But, as you so eloquently say, we have got to follow down the path of positivity and realize that each and every day is a blessing. Sending positive thoughts and prayers..
I am sorry to hear about your vision. I really appreciated your comments and it really does help to know that we are not alone and often struggle silently. I really want to change that and bring more awareness to us with MS, and also to everyone fighting an illness and that it’s nothing to be ashamed of, we can support each other and get more research and help to us. The ups and downs are so tough. I really want to lean more about meditation and or YOGA to help get through them, but I am so impatient or feel like I am just trying to get through the day. I also can’t seem to not have ADD lol. I really appreciate your support and I am so sorry to hear about your vision.
So happy it was not PML! Good on you for focusing on the positive and moving forward.
Yes! Thank you!
So thrilled for your results! Yes, you pronounced the new medication correct. I have not looked into that one, but my doctor mentioned it at one time. He had me read MS for Dummies as it explains so many things well, like the medications available with the side effects. I have taken steroids with each relapse. I have given myself the shots with the steroids, ACH or ACHTHAR, is what I took. It helps so much! I pray you have good results with your steroids and the new therapy when you begin. :)
Thank you so much and the book recommendation I will check it out!!
Hi Sara Im sorry you went through that, hope youre feeling well soon🥺🤗hope everything works out in your favor, so glad youre pml negative🎉 Im so happy for you🎉
Thank you so much!!
Today is one year exactly since I got diagnosed with PPMS. I'd began test's MRI, Spinal fluid in March but the confirmation consultation was on the 30th June 22. I had my first half of Ocrevus on the 8th December, so a bit of delay. That was the time it took to switch from my Private medical diagnosis to NHS (in England) treatment. Private firms are not allowed to administer Ocrevus. I'd also had a routine work medical in October and that gave a suspicion of Prostate Cancer. This turned out to be the case so my Ocrevus treatment stopped and I had my Prostate removed by Robotic assisted Surgery in February. My Ocrevus is due to start over late August. My symptoms took a downhill trend last week of May. From drop foot to whole left leg. Along with a slowing of my left arm and lack of sensation. I stumbled (no pun intended) across you posts today and see similarities with the symptoms and struggles etc you have. Glad you had some good news here. Warm regards.
Thank you for commenting, it does seem that we have similarities. I wish you well with the Ocrevus. If you find your symptoms are not improving or getting worse, there are a lot of options out there. Keep fighting!
You pronounced it right! 👍
I just came across you over the weekend and am so glad you are PML negative.
I was diagnosed during pandemic 2020 and it's been extremely brutal. My 1st med didn't work at all (tecfidera) and the 2 rounds solumedrol didn't touch it either. I was then diagnosed aggressive RRMS.
i will continue to pray for you, for strength and also will continue to follow along your journey.
I just popped on comments to let you know you are not alone!
MS is a scary monster and it's really good you know things can be worse, but I also want to say that it is also ok to cry when needed as well.
I am still grieving 😢
But that doesn't mean I'm ungrateful, a negative nelly or I'm not trying my absolute hardest with this monster. Grieving is your body's way of honoring what you had.
I have heard of others who are also epileptic from ms.
Please let us know how you are doing on your new DMT.
We just have to keep telling ourselves ms is hard but we can do hard.
Thank you so much ❤️I really appreciate it. Thanks for the reassurance on saying the name right 😊 Yes it’s been tough. Are you on medication now that’s working? I am sorry to hear the others didn’t. It’s hard not to grieve. I was just absolutely shocked I had MS even after all the crazy symptoms I just didn’t think it could be that.
I really appreciate you taking time out to comment!
@SaraslivingwithMS so I was put on tysabri. I am in remission finally but I feel like that's the wrong word. Remission. I had an incredible amount of damage done that I pretty much feel sick every day. Which sounds so negative, I know... but it's just the truth, negative or not. I had shock too!! I had always exercised, watched my weight and ate pretty healthy (not perfect though) because heart disease/diabetes type 2 runs in family. I thought at 25 let's avoid that horrible stuff with prevention... then at 42. Wham! Lol
The first year I was bedridden so I was literally just trying to survive. And now reality has sunk in along with grief.
I have hope there will be better treatments, possibly remylination drugs that will be developed in time to help my kids/grandkids in case my worst nightmare comes true and they get this.
I'm focused on trying to exercise and meditation to help manage stress.
If you haven't heard of these 2 ms drs on CZcams, I HIGHLY encourage you to check them out. Dr Aaron Boster and Dr Brandon Bieber. There videos are soo helpful, super encouraging and so compassionate.
Giving you a hug, I hope you can get on your steroids soon, start perking up and please please try to sleep and rest as much as you can right now.
If you can find a ms support group, those are very helpful in your journey to staying positive and to support through the negative.
I will keep you in my prayers Sara.
You are one tough cookie!!
@@donnabolt5847 thank you so much!! Has the Tysabri working for you? Have you been getting your JCV levels checked regularly? I really appreciate your support. I was always a non medication, eat and exercise person as well and then NOPE not anymore. However I am staying positive and have great family support. I really want to start meditation but I am horrible at it. Total ADD. Have your symptoms improved where you are walking around and feeling better? I hope so no really appreciate your support ❤️❤️
@@SaraslivingwithMS yeah... i just realized I never responded 😐
I am still jc negative so I am lucky for that but will continue to get bloodwork every 6 months to make sure I don't have it and if I do what levels.
So, you can do meditation training called heartmath and it will actually monitor how well you do with meditating . I can never seem to go longer than 3 minutes but that's ok. The trick with meditating is that when your mind wanders (and it will) you just re-center yourself again. And repeat. Lol. But there are also free meditating youtube videos to help you breathe properly if you dont want to pay for heartmath.
Did you stop the med amprya ? I know that people who have seizures are contraindicated.
Enjoy your new puppy. I hope he brings you a lot of comfort snuggling and maybe even motivate you to take on a walk.
I'm so happy you are doing great. One day at a time.
Thank you so much!
Hi Sara
Did you have any other health issues prior to MS diagnosis?
Such as allergies, inflammation, etc.
Thanks
Omz
❤
❤️❤️
Are you still working just curious because it’s been very difficult to fight the MS if you have to work like I do to support family
Yes I work full time. I am lucky to work from home and have an understanding boss and I also have intermittent FMLA just in case I have a bad week. With the seizures i had it was really tough to go back and I missed many days. If I keep having them I am not sure what I will do. I hope the medication works! It’s tough. I hope you are feeling well right now!
@@SaraslivingwithMS I’m 3 years in when it came “the symptoms “ they never left! I’m still working in automotive industry full time. Unfortunately I’m not sure how much longer I can fight! To say the least it wasn’t easy for me to accept and really still is. I’m medication free and militant in my approach to fighting this disease with a sort of homeopathic protocol. If I didn’t have some success I wouldn’t go it alone so to speak. I’ve been diagnosed by 3 different leading neurologists so I can’t deny. I’m a former veteran and father to triplet girls that are 8. I have a lot of reasons to not give but trying to find good honest and accurate information on treatments has been difficult. The DMT drugs side effects have kept me searching for another way but time is running short as we both know the progression. If I didn’t have some success then I wouldn’t be med free. The doctors have always left me with more questions than answers. Truth is I don’t feel like they made an honest effort to treat me as an individual patient. My experience has been my doctors wanting me to be a Ginny pig trying the vast array of overstated dugs with lil benefit and a lot of side effects. Idk I’m rambling n bit frustrated I guess. This is really first time I’ve tried to talk about this online or with another MS patient. I hope n PRAY 🙏 you find a healthy answer to the invisible enemy we both face that hits hard! Keep your head ⬆️