Good Morning! My name is Rhonda. I Am 50 years old . I have RRMS.
This is my first time to post. I appreciate this forum and those with similar circumstances and illnesses who can relate and offer empathy and advice!
I wonder if there are any of you out there who have increasing symptoms but your MRIs are not changing.
Have you read or heard anything about 3Tesla MRI picking up lesions in gray matter that aren't necessarily showing up on 1.5Tesla machines in white matter?
Looking for thoughts and input.
Thanks!
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rgdickson10
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That would be me! I'm new to MS (sort of) Symptoms just started last June28, 2016 I have 20+ white spots in brain and spinal lesions. My MS Neuro feels that spinal lesions are MS, but there has been no change in size or shape of brain white spots, so he won't DX any MS there. My numbness & tingling have steadily increase and I now take Gabapentin for tingling and Modafinil for brain fog. I just turned 69 earlier in May. Glad you are here and Welcome. There are allot of wonderful, knowledgeable people here! Feel free to ask questions, or to comment on others posts..
For me I wouldn't say that my symptoms has increased but I would describe them as progressing. I've no new lesions in my MRI but some things have gotten worse over time. I think that if you've certain mobility issues and don't use certain muscles they'll become weaker and over time you'll find the mobility issues becoming worse.
SO TRUE I have a family member that has MS she was in Maryland alone and was scared to go anywhere or keep active scared of falling now she cant walk worth nothing she moved back home but she still scared I cant do much outside but I walk in my house and do excises that I can do it wears me out but I try
Welcome, rgdickson10 , we're sorry you've joined our club, but happy to meet you. I don't know much about the MRI, except that the 3 is stronger than the 1.5. I recently had an MRI and had to go with the 1.5 because I have an implanted bladder stimulator and the 3 was not approved for use with my stimulator. Maybe the stronger magnet would cause the device to rip through my skin and out of my body.😉 I was assured that the results would be no different had they been able to use the stronger MRI. As for symptoms, I'm like Royjr . My MRIs remain the same, but I've progressed. Last July my neuro said I am now SPMS, but who really knows. I think there is still so much they don't know about MS.
We hope you visit and post whenever you feel like chiming in, asking a question, venting, or encouraging others here. Again, a warm welcome to you, Rhonda. 💕
Welcome Rhonda to our group.! I have had RRMS to over 12 years. I feel my symptoms have progressed and will ask my neurologist when I see him next month. Stay strong😀
Hi rgdickson10 ! When I had my last neuro checkup in April, I asked him about this topic. My MRI's have been stable the last 5 years but recently some of my symptoms seem worse. I asked him why wouldn't this have shown up in the MRI results. His response was that the MRI studies are the best tool they have for monitoring progression but they don't capture 100% of everything in the brain. I was diagnosed over 17 years ago and for most of that time, the MRI's have been stable but my condition is always in flux.
I've had no new lesions since I was diagnosed 9 yrs ago and limited symptoms for yrs despite many initial lesions, but sometimes I feel like I now have new symptoms accumulating every week...RRMS now SPMS I guess
I get 3T MRIs. And yes, I agree, the MRIs may not be sensitive enough to show some changes that are occurring.
The EDSS is also not sensitive enough to capture all disabilities.
I think the MS world is aware of this and looking at new ways to define these changes.
Rhonda, when I turned 50, all hell started breaking loose with my RRMS... I'm 52 now so all I know is that the MonSter is progressing, and I'm slowing down... My MRI a couple of years ago showed new plagues on my spine, but mostly I just think the progressive nature of MS simply is taking it's toll on me... I have a friend with whom I graduated high school who also has MS, and she is experiencing the same type of progression...
Don't know if this helps, but for me after 30+ years of battling this MonSter, I'm grateful that I'm still walking thanks to Ampyra--yep, I'm a walking drug store with pills morning, noon, and night along with Copaxone 3x a week... Better living through chemistry!!! Cj
Yes, this sounds familiar! My doctor won't push me into the category of SPMS because there are no new lesions, but with the progression of my symptoms, what else could be happening?? Ugh! Like you, I am very grateful to be able to ambulate as I know that my disease process has been slow compared to so many others; however, I just can't seem to catch a break from my doc or from disability, and I don't know why other's have such a difficult time understanding...i feel invisible sometimes. Thanks for your insight. I have a Neuro appointment today. 🌼
rgdickson10 , a warm welcome to a group we wish was unnecessary. I can't add anything to the MRI question, but agree that testing, advanced as it has become, still is limited when it comes to MS. I had a negative MRI 20 years ago, but had intermittent symptoms during those years and a relapse and positive MRI last fall. I've described my symptoms as a "stable roller coaster," but have noticed some gradual increase in symptoms. I would love to learn that medicine has all the answers, but until then, we support one another.
Hi rgdickson10,Welcome and yes I have the same oddity. One thing to keep in mind, MS is a mystery. Science makes
" guesses" as to why things happen and what will work. As a nurse, I get particularly frustrated when I live in my body, I know what I'm experiencing and my Neuro tells me, " can't be caused by MS, your lesion load and location doesn't support your symptoms and your MRI really hasn't changed".
An MRI is only 1 of the tools used to monitor MS.A very wise MS specialist once told me " MRI cannot possibly see all of the lesions deep in the brain.It is not a foolproof test. In addition,the brain is very intricate. A patient can have a lesion in one area and it affects a totally unrelated area because, all nerves are connected "
Trust your perception of your body,keep a log and know that if you feel it, it is real. The medical community is not comfortable not having a definitive explanation,but you already have it rgdickson10, you have MS.
Ahh yes, after my own heart! Someone whongrts it! But alas, what to do? There are limitations to treatment options, and I'm there. I want to branch out and have hit road blocks. I'm 'too healthy' for disability they say, and my doc can't do certain meds, etc etc. Frustrating!
Hi rgdickson10 geeze l almost missed you. I'm so sorry! 1st off, call MSAA 1st thing in the morning! They can help you with your disability, social security stuff and give you a list of Neurologists if you feel that you want to change.☺
Welcome to the family! As you can see we talk about pretty much anything and everything here but most of all Support each other!😊 We also find it a pretty good place to vent.😅
Hope your appointment went well?
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Jes 🌠
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Hello and welcome rgdickson10 ! I haven't been diagnosed yet or even been to see a doctor about my "symptoms" still waiting on my medical cards from health insurance to come in the mail. I was, I believe, misdiagnosed in late 80's early 90's with fibro and chronic fatigue syndrome (or EBV). I am not yet sure and wondering how I'm going to explain to a doctor I've never seen before everything I am experiencing and feeling, both physically and mentally without sounding like a Whacked-out Nutjob! And in addition to that, how do I request tests and/or an MRI from my Primary Care Provider that I KNOW I so desperately need, or ask for a referral to a neuro? Hopefully, I will finally get a sense of relief, accomplishment, and satisfaction when I have my first appointment with her/them. I just feel so scared and uncertain at this point in my situation, like no doctor will understand or take the right approach to finding out if this is, in fact, MS or something else. I am at the mercy of the medical community right now, and as I've said before, I'm sick and tired of sitting in this unpredictable and frustrating waiting room!!! Hoping you find the answers to your questions soon, and know that this is the best place to start asking them! Peace and comforting thoughts going out to you.......
I feel your pain and uncertainty! I went undiagnosed for over 15 years, then finally got a diagnosis from my Neurologist with an LP, MRI, and all of my previous history, then had a flunkie resident at a 'prestigious' institution in Houston tell me they didn't think I had MS! Go figure! I wish you well, and pray you get your diagnosis. The knowing gets you on the path of doing!
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