Last reply 3 months ago
MRI follow up/ neurology appointment

Hi guys, so I had my first follow up appointment today to discuss my MRI results, and my diagnoses in general. My neurologist has said that it’s quite uncommon for someone with suspected MS as young as me (26) to have motor and bladder problems, he seemed to be suggesting I had it quite severe. I just wanted to come on and see if anyone else has experienced similar/ has similar symptoms? I got to view my scans and I have a lot of lesions on my cervical spine, this new info is scary and it does make me nervous about my future.

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julia_rahn
3 months ago

I had motor and bladder problems and was diagnosed in 2002 with RRMS. I was 24. Don’t let this get you down(I know it’s hard). I tried a few of the MS meds, Avonex, Copaxone, Tysabri, and now Rituxan. I’m 40 now, still walking and talking and living life. When I was first diagnosed, I had severe depression and assumed my life was over. That couldn’t be farther from the truth. Though I am no longer able to work due to severe Fatigue and brain fog, my life isn’t what I envisioned, but, I’ve made lemonade out of the lemons life handed me. Days aren’t easy but I still consider everyday I open my eyes, a great day. Even though things didn’t work out as I envisioned, my life is full and I feel so grateful to have been diagnosed and change the way I was living before my diagnosis.


isidora
3 months ago

@julia_rahn Before I could even respond to Camilla, I saw your comment and almost cried (that good-everything is going to be alright-cry). I felt the same when I was first diagnosed at 20 years old. It felt like my world was crashing before it even started. After a few months, here I am nearly two years later tolerating Tysabri pretty well and beginning to look up and ahead again. Conquering my fears everyday is something that I will live with forever.
I’ve become friends with the unknown and let it fuel my motivation for a healthy life.
I’m glad there are people out there who can share stories like your own, nearly twenty years later after diagnosed and doing well. I’m very happy for you. Keep up the blessed positive perspective, it makes all the difference.
Best,
Gina

@camilla_foster I am 22, I know how scary it is at such a young age to go through what we endure. As scary as it can be, I find it helpful to not let my mind dwell on it- It’s something that we can live with just a bit differently. Yoga has helped calm my nerves and staying occupied like any other busy twenty year old young girl with school, work, friends ect. I have not experienced extreme motor problems or bladder problems but I do have headaches occasionally under stress so I try to limit stressors as much as I can. You can discuss changing medications if you feel your symptoms are worsening. While being on Tysabri, I haven’t had any new or worsening lesions. My next MRI is in June so I will see!

Best,

Gina


julia_rahn
3 months ago

@isidora Thanks for the kind words❤️


smack
3 months ago

I have bladder and mobility issues. I had an MRI of my spine and it showed multiple lesions. Doc said pick a drug. I chose Ocrevus., I was stabile for years but the MS woke up. I am having my second dose next month. Been working on gait with balance exercises. Was getting around with cane but use a walker more now. Don’t want to fall. I am 63 and was dx’ed in 1994. Good Luck!!


camilla_foster
3 months ago

Thank you @julia_rahn your comment has helped reassure me 😊 I’m sorry to hear you have suffered from depression but your positive outlook is inspiring, thank you for sharing.
@isidora I have heard yoga is helpful and I may indeed try this! Thank you for your comment too and good luck on your next MRI.


camilla_foster
3 months ago

@smack thank you for your comment, I need to research different treatment options. I’m sorry to hear your MS woke back up, I hope your second dose is successful!


danielle_scott
3 months ago

I was diagnosed with relapsing and remitting ms at 16 😢


julia_rahn
3 months ago

@camilla_foster I Thanks for your comment. Most of the time fatigue and muscle spasms are my biggest problems. I just started cleaning up my diet by making 90% of what I eat fresh fruit and vegetables. I am limiting animal protein as it’s proven to cause inflammation in the body. Getting most of my protein now from beans. I also have short term memory loss and brain fog, the diet change has helped for sure. Keep your head up and remember to strive to improve the things you can control❤️


amber_steele_jack
3 months ago

Hey everybody I was just diagnosed last week with rrms. I’m 36. I have so many questions. The dr told me to pick what drug I wanted to take and I chose copaxone. I feel like i now question every pain I have wondering if its ms or just normal wear and tare on my body. Did anyone else ever feel that way?


highlander
3 months ago

@amber_steele_jack
Hi and welcome to the gang!
I’ve sent a pm to you.


monique
3 months ago

@camilla I was dx RRMS 24 years ago with bladder issues and motor problems. there is so many treatments that can assist you with both. Good luck. I was on Betseron for 20 years and them changed to Tuvigin both i consider miracle treaments I respsonded well to both and my MS has not progressed I am now 50 years old and can manage to live on my own by choice and am doing so well. Good luck as you find the treatment that works for you. There is hope.


camilla_foster
3 months ago

@julia_rahn yes I think I need to do the research into what foods to avoid, I want to take the steps to clean up my diet too. It will certainly give me something to focus on, so I feel more in control, you are right. I’m already a vegetarian, and my neurologist has suggested cutting down dairy. Thank you for the kind words ♥️


camilla_foster
3 months ago

@amber_steele_jack you’re not alone! I am always wondering what is MS pain and what is normal wear and tear.


camilla_foster
3 months ago

@monique thank you for your comment and sharing, I’m glad you hear you are doing so well 😊. I need to research treatment options, and do hope I have the same success as you ♥️


amber_steele_jack
3 months ago

camilla_foster thanks it’s nice to know I’m not alone. Do you find with MS You are achy a lot of the time?


camilla_foster
3 months ago

@amber_steele_jack I do get achy a fair bit yeah, often it is after I have had a bit to drink… But I have had this for years and can only assume it has been MS.

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