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.