i havent seen my neurologist since he told me i had progressive MS in 2016, nowt we can do, but make you comfortable if you want meds we can offer them to you. 2 weeks later i lost my beloved mother. then 2017 my husband. I am amazed i have managed to keep going. I had a bright orb on one MRI and the radiologist said it was my AGE lol. my neurologist didnt agree. I was diagnosed not with MRI or LP, but two vep tests. I had MRi with lesions in 3 different places, and my LP was showing ON bands but the blood test they do at the same time showed inflammation which in the UK means its negative for MS. My first MRI results way back in 2006 showed high signal foci in the white matter of my brain, COULD BE DEMYLINATION but the radiologist again said it was probably down my age. My VEP tests one in IN 2007 and one in 2015 showed worsening of demylinsation between brain and optic nerve proving it was MS, BUT Primary progressive MS. thats it lol. I went to orthotics because of problems with my left foot, (not foot drop), they did a load of tests and said sorry nothing we can do, your brain isnt telling you where you foot is, would you like a load of pain drugs we can keep you comfortable lol. no thanks, and that was a few month ago. in the UK its not normal to be told specifics of tests. I love Aaron Boster MD wish we had him in the UK lol. I love your channel too its very easy to watch. Even so It is well with my soul When peace like a river attendeth my way When sorrows like sea billows roll Whatever my lot, Thou hast taught me to say It is well, it is well with my soul It is well with my soul It is well with my soul
@@hedgehogwildlifejunction9119 thank you for sharing your story. It sounds like you have persevered through some very tough times. That speaks volumes to your internal strength. I recommend checking one the Overcoming MS program. The combination of diet and lifestyle changes have helped many with MS live better with their MS.
Interesting! Thank you! I wasn't aware that there were different MRI machines. Nor was I aware that leisions on the spine are typically more responsible for MS symptoms than the brain.
Edye Nicole Thanks so much! Welcome to our community! So glad you liked this video. Staying curious and informed is a big part of my living well with my MS.
I just got my first MRI of the brain with multiple hyper-intense lesions on the juxticortical and periventricular areas. (I am not sure about the black holes.) However, I know those aren't the #1 areas looked at for MS diagnosis. I did not have any images done of my spine and the images I did have done of the brain were on a 1.5T machine. This video was super helpful in alerting me that I should ask about my spine and whether a 3T machine should be used. BTW, most of my problems are also on my left side.
@@dermlover1 I have nerve pain on my head and sometimes across my face on the left side. I then often have nerve pain in my left arm and leg. I had increased confusion, difficulty with switching tasks, and difficulty with recall of words or remembering tasks. I also experienced a change in my walking (foot drop and zig zag walking) and changes to my vision. That said, I started developing abdominal pain a few months ago which led to more tests and eventually it was found that I have systemic sclerosis (or scleroderma, diffuse type). I'm now focusing on getting in with a rheumatologist at Mayo Clinic in Jacksonville. But this still doesn't explain all my symptoms or the white matter lesions. (They did not find any on my spine or brain stem at this time.) I will be curious to find out whether there is ever overlap between MS and systemic sclerosis or not.
I was diagnosed in April and will make sure I have a yearly MRI. Unfortunately my neurologist is not super communicative! He only spent about 2 mins looking at my MRI after I requested to look at it. I did acquire a copy. I found Dr Boster’s channel when trying to learn how to read it. He is awesome and have recommended his channel to others. Appreciate you sharing your story - hugs x
Preach Sister!! I love the portal that my health care provider uses! I stay within their Network and able to see all my test results and doctor's notes. I always tell people to get copies of everything, it's their health and like you said if you move or have to change doctor's it is so important. Great topic 👍👍
I get MRI's w/ neuroquant whenever my insurance allows it. My channel name is how I compare w/ the general population. 89% of ppl my age have more functional brain tissue than I do. Scary place to be.
Thanks for the response. MRIs are definitely a needed tool for us to gauge our disease progression! Does neuroquant measure brain volume? I am finding it difficult to find quantitative measurements of loss of volume.
@@EvenSoItIsWell That's precisely what it does! NeuroQuant is (I think) the official name of the add-on to the MRI test. Dr B is the 1st doc who ordered on for me. Apparently, my brain is a teeny, tiny mess, haha!
Excellent question Meghansloth! I can’t give medical advice but I will share my thoughts and experience. No, dye is not needed to see the lesions, but the dye can help our doctors see lesions and active lesions as they are more enhanced by the dye. That said if you can get your MRIs on a 3T (3 Tesla) it will give the best images so contrast may not be needed. Do you have concerns about using the dye?
I finally reached the mri phase. And I had white lesions ("spots"?) and I was told They may cause my headaches. Meantime I have so many other symptoms and I just want the pain to stop.
@@dermlover1 I don't know. More than two I'm guessing. The help nurse who called said "some white spots." I don't return to the neurologist until April...
I love "comparing notes" with other MSers! I don't have any lesions on my c-spine, but too many to count on my brain. I did have my entire left arm go numb from collar bone to finger tips over the course of a week back in 2011. If I'd been diagnosed at that time, I may have had some damage show up on MRI? My doctor told me it was probably a pinched nerve, no worries! It took 9 or 10 months for all the feeling to return, so I know the body is capable of amazing things! Oh my, your black hole is scary looking. I have three or four small black holes, but I don't know what it effects, other than access to a broad vocabulary that I now don't have rapid access to, so I call them potholes in a vacant parking lot! My neurologist pointed out the spot on my MRI that's responsible for my poor balance and vertigo, in or near my pons. It's very fascinating!
Forgot to mention--I haven't had an MRI in two years because my scans in 2018 were stable, and I've had no new symptoms or progression since I switched from Copaxone to Rebif in 2016! Knock on wood, we both keep up our "stability", even though MS sometimes sweeps us off our feet and tends to make us forget why we went into another room--ha!
Jennifer Roshto good morning! I am glad your left arm is better! No worries about my black hole. I am doing well. My MS symptoms are pretty mild. I have balance issues, left side numbness, spasms and some pain during heat and cardio workouts but all very manageable. It is amazing how our brains can heal and require huh? Go neuroplasticity! .
@@MikeyIvers thanks for watching. I can’t give medical advice but from what I have read MS lesions tend to be oval or long in shape not small circular (punctate). Check out this article jamanetwork.com/journals/jamaneurology/fullarticle/1107930
@@EvenSoItIsWell thank you. I have many Ms symptoms like pins needles numbness in face. Pinching pain in finger tips wrist pain , ankles hurt and balance can be not good at times. But my mri result says hyperintense puctate lesions in t2 flair in subcortial white matter. I will just have to wait to see my neurologist to see what he says. Also had an mri on my neck and my spinal cord is narrowing. Thank you so kind for you to reply
How long befor i found out if i have it i just went into the hospital last Sunday for a 3 hours MRI i have not herd anyth yet they said my dr was not on the floor it was the weekend nowits been a week still no news my sister has it and i am in kind bad shape
Hang in there Brenda!! Diagnosis can sometimes take a long time. It took over a year for me to get my official diagnosis. Take good care and be gentle with yourself.
