Not what I wanted to hear...

1,085
0
Published 2022-11-01
In today's video I wanted to share with you my recent MRI results. I have not had the full explanation yet from my neurologist but this is what my MS nurse told me.

Let me know in the comments if you have had any MRI's that shocked you (good or bad) as I would love to hear how other people have dealt with all the ups and downs.

Song used: open.spotify.com/track/21yzEWRDy5S9Q440pvxdOT?si=9…

All Comments (21)
  • @gldiego
    Please stay positive; feeling good and knowing the most important things are there!. Keep searching for this way to enjoy the journey.
  • @Durace11Bunny
    Hey Bro, keep doing what you're doing. Essentially you're buying yourself time. In the not to distant future this disease will be as boring as a wet fart (well some times they can be exciting lol). They'll figure it out! And as much as it's great to be positive, remember it's ok not to be, so make sure you absorb those down days and use them as fuel. Much love!
  • @mr2348frbfgv
    Your mental strength will overcome your physical blips my man. Keep driving and believing. Your a massive influence on anybody that hasn’t been blessed with a “perfect physical existence”. But my goodness you are the perfect example for anybody that unfortunately has a disease to deal with. Hats off to you man. Your amazing!
  • @kitty.bradly
    It was definitely still worth doing everything you're doing. My next appointments in January, I won't get my hopes up for my MRI results because I have new symptoms but it could have been worse and I'm still hopeful for the future and doing whatever I can do. Take care of yourself 😊
  • So sorry about your results Tom! Sending all the love, hope you get more clarity from your neurologist.
  • Hi again!! Sorry to hear and I can always relate to your journey as it is similar to mine! Stay positive and stay connected as you are my MS buddy thru your channel! Kerry
  • Sorry to hear that Tom. I also had activity in my MRI after being on Interferon for a year. I started few life style changes. My neurologist also switched to Tecfidera instead of the Avonex...hope it works. I also have revisiting symptoms like hand numbness and back and neck pain that could be related to my spinal lesion or else to other vertebral column issue I am not sure ...still investigating though. Please keep us updated and let us know about your doctor appointment, I hope it goes well.
  • @__Wanderer
    Im sorry to hear that Tom :/ It is a gut wrenching feeling. My most recent MRI 4 months ago also had activity sadly, it is what led to my "official" diagnosis with one new lesion. Although I was expecting confirmation it was rough to hear. Now on vumerity/tecfidera and hope it works. Although from what i've read it isn't nearly as effective as Ocrevus. I would have liked ocrevus but in the netherlands they start you out on a lower drug... Still on the old escalation model here - feels bizarrem, i have to wait around till i get more brain damage before taking something better :/ Also sticking to trying to stay healthy though and fingers crossed that the meds work for the both of us long term :)
  • @forkums
    All the best to you. Stay optimistic, strong and motivated. There is nothing wrong with wishful thinking. It certainly beats the opposite of being pessimistic, down, depressed. Keep doing what you're doing at the very least it gives you some control over MS and there are other health benefits. looking at your past videos I think we are doing similar things. If I was told tomorrow things we are doing don’t work, I would continue doing them. This is now my lifestyle. I did have an MRI six months after starting Ocrevus and there no new lesions or activity. Prior to that MRI mineralogist did tell me not to be disappointed if there was some activity because I was on my first round of Ocrevus.
  • Its good to hear that you got no new symptoms .My MRI is scheduled in January. I hope results will be satisfactory. Rightnow I am taking no drugs. NEUROLOGIST decided to wait for the new MRI. drugs will be decided after new MRI results.
  • Sorry it wasn’t the news you were expecting to hear, don’t be too disappointed wait to hear what the neurologist has to say about it. You are doing amazing and thank you for sharing your journey with us.
  • @goddess.110
    I'm so sorry to hear that. But I'm sure you will be able to put the lesions in remission by the next MRI. I had active lesions until the most recent scan when the changes in lifestyle didn't show anymore lesions.
  • Sorry it wasn't better news Tom, but keep taking exquisite care of yourself. The diet and lifestyle changes will help you and your MS progression in the long run.
  • @juliette1884
    Hi Tom just want say sometimes in first few years the MRI come out this way but later will get better you will see difference after two or three years .With right medicine as well Your appointment to far away for neurologist you have discusse this with him
  • @Paul9735
    Sorry to hear that man but I’m glad you have no new symptoms. You might have to wait till the next MRI to truly know if things are improving. Do you also do it twice a year?
  • @ramazan9857
    I'm 22 years old, I was diagnosed with MS 2 years ago, I don't want to be disabled, what should I do?
  • Hi Tom. Been watching your videos. I do far too much googling for every illness, especially when suffering with anxiety too. Ive been getting a few symptoms, like burning, numbness, crawling skin feeling and tingles. But have been told by the docs that's it's meralgia paresthetica. A condition of a compressed nerve. I have a lot of nerve pain in shoulder and leg from siatica and a pinched nerve in shoulder from a old dislocation, but these numb tingling and burning feeling in the thighs and legs has been there for quiet some years now. It seems very hard to get help and be looked at. I think the anxiety and worry make it a whole lot worse Graham.
  • @beastywild
    Do you have any new symptoms though Tom?
  • @StarsManny
    You had an MRI back in July, and they're only giving you the results now?