MRI Brain Scan-40 year old Female

Posted by elishara23 @elishara23, Jul 27, 2023

I have been having memory loss, balance has been off, moderate pain in my right eye socket with blurred vision and pain in the right side of head, vertigo, and right hand tremors for several months now, I had a mri on my brain, it showed "a few scattered foci of FLAIR hyperintensity in the periventricular and subcortical white matter of the bilateral frontal lobes. My dr. says there is nothing wrong with me, i just cant accept this answer, there is obviously something going on, has anyone had anything like this? Im not sure what to do now, it is really upsetting that noone will believe me.

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@rwinney

The reason I ask is that sometimes a new or a major life event such as surgery or some sort of stressful situation can cause undue neurological symptoms. It may present in the form of central sensitization, but isn't typically ruled as such until all other potential diagnoes have been ruled out or are proven inconclusive. Here's information from Cleveland Clinic on Central Sensitization Syndrome:

- https://www.ccjm.org/content/90/4/245

I have CSS and went through quite a bit of Hell getting to the point of correct diagnosis. I bring it up as a consideration to those who may be just as confused and frustrated as I was because many doctors are unaware or uneducated on this condition. Anyway, some food for thought as you continue to navigate your symptoms. Hopefully other members jump in with their thoughts or experiences. Do you plan on seeking a 2nd neurological opinion or having further tests?

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My September Neurologist will be my 4th this year.

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Look into stress and autoimmune diseases perhaps?

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@kassilevon

Hey @elishara23 🤗
Thanks for posting! First, this all stinks and I’m sorry this path has found you! It’s always something right?! I’m female and just turned 39. I have all your symptoms and more! I’m sure you have way more symptoms than you mentioned too! I attached two pics of my most recent MRI. I see a Neurovascular doc Tuesday. I’ve been seeing an MS doc since May. I have no diagnoses yet, but MS, CADASIL, and microangiopathy are the current top suspects. I also had an LP yesterday, tons of blood work… EEG… I even broke my ankle in October, and I barely did anything to cause the break! I’ve been going downhill since at least last October. I’ve also lost 80lbs and counting this year for no reason. I am seeing a GI doc too. No Celiac but tons of significant food sensitivities. Low Vitamin D and all Vitamin B levels. I am supplementing these. I switched to methylated B-complex because I wasn’t having benefit with standard B vitamins. May have to switch to shots or something… I’d love to keep in touch with you through your journey! I hope I can be helpful somehow! I have been trying to fill out my Mayo application for weeks now and I am just having the hardest time getting it done because of my memory, brain fog, confusion, and on and on… Brain’s kinda clearer today! Ebbs and flows every day. We’re in Colorado and I have been scheduled with UCHealth for September, since February. They even called recently and had to move me back a week. I looked into the CADASIL study at CU and reached out to them; that is how I got into the Neurovascular department so fast-that doc doesn’t want me to keep waiting. UCHealth and Mayo is where my current Neurologist says I should be. Maybe you could look into research studies too and it might help some with the burden of costs? And help others! We may just pack up and head to Phoenix too! I just had to resign because of my condition-nurse at Children’s Hospital Colorado for 14 years 😓 It hurts. We also stopped our adoption process. I’m behind in everything. Our house is a disaster! I have to have babysitters when my husband travels for work 🤦🏼‍♀️ I also just finished my master’s degree, so gotta pay that loan somehow. I give myself no choice but to stay positive like all the kiddos do that I’ve taken care of. Humor is a great great great drug too! Embrace others. Let others help. Don’t do this alone. I tried, I failed. And I don’t do failing… Very stubborn and independent over here. It’s my survival mechanism. I have definitely had to learn how to ask for help and be ok with not having my crap together… That is how I’ve gotten to where I am with docs and tests, family and friends making the appts and taking me 😊 I missed 6 appts this Spring in like 2 months because I was so sick, and so I admitted I needed help. I use a walker these days. I have fallen 4 times in the last month. Massive bruises 🤦🏼‍♀️ My hearing and vision are declining too. I have an Audiology and ENT appt scheduled for October. I have a sleep disorder, PLMD. I choke and cough on my own spit, can’t speak sometimes… I attached also a pic of my most impressive bruise this far! Being an open book has given me love, community, and opportunity. And your loved ones wanna help! Let ‘em! I say this because I needed to hear this; you may not need to 😉 And so it goes… 😊 Always fight for yourself! You’ve got this! And you’re still and always will be, You! Just be you! You do you boo boo! It’s your life. And you decide where your head and heart are at! I have to constantly remind myself to be graceful to myself and others. We’re all just doing our best. And that’s all we should expect. Forgive yourself, forgive others. Health starts with love. Live and love your life girl! No matter the scenario. Fight for your physical health, but don’t let it consume you.
Mental health needs to stay in balance too, or what’s the point? Talk soon I hope! 🤠🦖🥹 My deepest, sincerest regards.

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This sounds just like me, thank you so much for replying, I also broke my left foot a year ago, it's still broken, won't heal, I have severe GI issues, had minimally low b12 and d. Lost 20 pounds in about 2 months time, severe fatigue too. I'd love to keep in touch! I hope your journey gets smoother for you, i know how hard this process is, I also work in the medical field and am having a hard time working, hoping I can get some answers sooner than later

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@elishara23

This sounds just like me, thank you so much for replying, I also broke my left foot a year ago, it's still broken, won't heal, I have severe GI issues, had minimally low b12 and d. Lost 20 pounds in about 2 months time, severe fatigue too. I'd love to keep in touch! I hope your journey gets smoother for you, i know how hard this process is, I also work in the medical field and am having a hard time working, hoping I can get some answers sooner than later

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Hey healthcare hero! I hope your foot heals, jeepers! I will definitely stay in touch! Here’s to answers and love and joy! Talk soon 🤗

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I’ll update you after the Neurovascular doc Tuesday and LP results next week! As far as no one believing you, the only person that has to believe is you. You’ll find your other healthcare, wellness, and joy soulmates, just keep looking! Sometimes they’re even right in front of you. I like to always put on a brave face, so no one ever thinks anything is wrong with me either. It helps me to journal and share my journal. Can’t deny years and pages of validation. This literally saved my life from a very abusive situation that was taking all my money and my soul, and not supporting me in finding answers. We were both wrong, I made plenty of mistakes too. And now we’re both doing much better. Take videos and pics of yourself. Ask your doc to take pics of you with your camera. I also use Bearable, it’s a symptom tracker app-not free but great! Make sure your doctors actually weigh you and don’t just ask you what you weigh, leave a paper trail, you don’t have to “complain” about everything-but Mention Everything. Build your case 😊Take people that know you and see your symptoms or changes, struggles, whatever, to doctor visits with you! Keep a copy of your records for every doctor visit, test, scan, lab, procedure, (get CD copies of MRIs, Xrays…), prescription (take pics of every bottle and make sure you see the manufacturer in the pic-ingredients can differ), vital sign, Everything, and make a physical book and an electronic book. Include everything! Birth records, childhood vaccines, everything you can. The state should have record of your vaccines if you need. I say this like it’s easy… I’ve been trying to pull all my records together for months! So give yourself grace. Life isn’t about perfection. It’s about life. Don’t cancel something fun if you don’t have to! Don’t miss birthdays! You get the idea… And I’d like to believe that if I walk into a doc’s office showing that I am doing everything I can and am invested in my health, they will help find me help. Even on the weeks I eat a gallon of ice cream in one sitting! We’re never perfect. Helpers should help no matter what in my book. But again, we’re all doing our best, even our very human docs who deep down want progress always, but have bad days too. They’ve taken long paths to be our providers, so they are invested. If you feel like you need to apologize for losing your temper, do it. Give people second chances. If you feel like you’re complaining, just say “I’m not complaining, I know there might not be an easy fix, but I want to share all the info I have.” You never know where that missing puzzle piece is, it’s missing 😜 If you feel dismissed or unheard, speak up again. At least you’ve said your part, more than once! It’s not about being right and wrong, it’s about progress and love. Acceptance. Respect. And if you feel like you’re not keeping up, just be honest- “I haven’t scheduled that lab yet because I feel like total crap! I can’t get out of the house because I’m dizzy. I puked the whole way here and that’s why I’m late.” It’s ok to need help, you’re in healthcare-you know we like to help because we know it’s what makes the world go ‘round and what people need, but we are the last to ask for or admit we need help, like almost always! And we hate to let others down, as do our own docs, I promise. Sometimes we just need to find new ways to communicate. Is there a song you totally connect with? Show your doc the lyrics. Alanis Morissette’s song “Diagnosis.” Write your own lyrics, poem. We are who we are, and that’s needed too! Let the world see you for all your greatness! Last thing, I went through a lot of therapists until I found the one, now 12 years ago!, and I’m never letting her go! She knows and loves me deeply! Community is a good thing, embrace it. Again, I say this because it’s what I needed to hear. 💗 And now I find everyone can relate somehow. And sharing helps others too. And helping others, well, obviously that’s what us healthcare workers live for! 😜🥹 “Live (well) and prosper.” 🖖🏼

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@kassilevon

Hey @elishara23 🤗
Thanks for posting! First, this all stinks and I’m sorry this path has found you! It’s always something right?! I’m female and just turned 39. I have all your symptoms and more! I’m sure you have way more symptoms than you mentioned too! I attached two pics of my most recent MRI. I see a Neurovascular doc Tuesday. I’ve been seeing an MS doc since May. I have no diagnoses yet, but MS, CADASIL, and microangiopathy are the current top suspects. I also had an LP yesterday, tons of blood work… EEG… I even broke my ankle in October, and I barely did anything to cause the break! I’ve been going downhill since at least last October. I’ve also lost 80lbs and counting this year for no reason. I am seeing a GI doc too. No Celiac but tons of significant food sensitivities. Low Vitamin D and all Vitamin B levels. I am supplementing these. I switched to methylated B-complex because I wasn’t having benefit with standard B vitamins. May have to switch to shots or something… I’d love to keep in touch with you through your journey! I hope I can be helpful somehow! I have been trying to fill out my Mayo application for weeks now and I am just having the hardest time getting it done because of my memory, brain fog, confusion, and on and on… Brain’s kinda clearer today! Ebbs and flows every day. We’re in Colorado and I have been scheduled with UCHealth for September, since February. They even called recently and had to move me back a week. I looked into the CADASIL study at CU and reached out to them; that is how I got into the Neurovascular department so fast-that doc doesn’t want me to keep waiting. UCHealth and Mayo is where my current Neurologist says I should be. Maybe you could look into research studies too and it might help some with the burden of costs? And help others! We may just pack up and head to Phoenix too! I just had to resign because of my condition-nurse at Children’s Hospital Colorado for 14 years 😓 It hurts. We also stopped our adoption process. I’m behind in everything. Our house is a disaster! I have to have babysitters when my husband travels for work 🤦🏼‍♀️ I also just finished my master’s degree, so gotta pay that loan somehow. I give myself no choice but to stay positive like all the kiddos do that I’ve taken care of. Humor is a great great great drug too! Embrace others. Let others help. Don’t do this alone. I tried, I failed. And I don’t do failing… Very stubborn and independent over here. It’s my survival mechanism. I have definitely had to learn how to ask for help and be ok with not having my crap together… That is how I’ve gotten to where I am with docs and tests, family and friends making the appts and taking me 😊 I missed 6 appts this Spring in like 2 months because I was so sick, and so I admitted I needed help. I use a walker these days. I have fallen 4 times in the last month. Massive bruises 🤦🏼‍♀️ My hearing and vision are declining too. I have an Audiology and ENT appt scheduled for October. I have a sleep disorder, PLMD. I choke and cough on my own spit, can’t speak sometimes… I attached also a pic of my most impressive bruise this far! Being an open book has given me love, community, and opportunity. And your loved ones wanna help! Let ‘em! I say this because I needed to hear this; you may not need to 😉 And so it goes… 😊 Always fight for yourself! You’ve got this! And you’re still and always will be, You! Just be you! You do you boo boo! It’s your life. And you decide where your head and heart are at! I have to constantly remind myself to be graceful to myself and others. We’re all just doing our best. And that’s all we should expect. Forgive yourself, forgive others. Health starts with love. Live and love your life girl! No matter the scenario. Fight for your physical health, but don’t let it consume you.
Mental health needs to stay in balance too, or what’s the point? Talk soon I hope! 🤠🦖🥹 My deepest, sincerest regards.

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Test for Superficial Siderosis.

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I definitely would get a second opinion. Was the MRI with and without contrast? Some of the symptoms you described sound like what I’ve had with a frontal-temporal meningioma. Have you seen a neurosurgeon or neuro-oncologist?

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@trpj95

I definitely would get a second opinion. Was the MRI with and without contrast? Some of the symptoms you described sound like what I’ve had with a frontal-temporal meningioma. Have you seen a neurosurgeon or neuro-oncologist?

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Thanks for replying! They did with and without contrast, he is a neurologist.

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Its not that they don't believe you, its because they don't know what to do because it can't be fixed with drugs, lotions, ointments or therapy. All you can do is try to build up your immune system go back to basics, vitamins, organic vegetables (GMO products wreak havoc with the body' function.) stay away from the dirty dozen fruits they are not good for you. Lots of people I know are getting bacterial infections from parasites that they ate and it takes a long time to figure out which one is causing you all the pain. I would recommend a naturopath but get ready to pay for all that knowledge and supplements that will help months down the road. Try to manage the pain.

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@kassilevon

Definitely get second, third, fourth opinions!!!

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Sometimes you have to accept what you’re told and then learn to live with it. Chasing a specific dx makes no sense.

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