Still searching for a diagnosis...
I started this journey in 2010 in my early 20s, when I noticed that I was having involuntary hand movements and numbness/tingling. Didn't take the visual disturbances as a symptom until the first neurologist asked about it. I had an MRI without contrast in 2010, nothing abnormal to note but no follow up with contrast. The doctor said he suspected early stage MS but without any evidence on my tests his recommendation was to follow up if I noticed any new or worsening symptoms. How vague.
Fast forward to December 2023. Suddenly hit with this feeling in my legs, like I was on a rocking boat or trying to walk down the aisle on a plane in turbulence. And it didn't go away. Since then, more and more symptoms are emerging, and looking back I recognize so many signs that I missed.
Now I'm waiting for my MRI, of course they are so booked that the first available appointment was three months out, and I have one month to go. It's frustrating. And I really want someone that I can talk to. I don't want to burden the people in my life without having an answer, and I feel lost at sea. My current neurologist said he suspects migraine disorder, without me experiencing migraine, headaches, auras, or any of the other classic symptoms other than visual issues.
I feel like I'm just venting at this point, but it's so important to have a safe place to share and speak freely about our experiences.
Hopefully the MRI next month will help give some definitive information. All I can do is keep recording my experiences and stay positive.
Well you are certainly in the right place so vent away! We totally understand the many emotions you're experiencing right now. The process of getting a diagnosis can be frustrating to say the least and become tiresome. But you are doing everything you can to get you one step closer and that's what's most important. Continue to journal your symptoms and experiences and keep your head up. Staying positive will carry you through this journey. Soon you will have the answers to get you on the right path to relief. Control the controllable and allow everything else to be. We will figure this out together. Your in my thoughts, Latoya (Team Member) thank you for your kind words. Ever since my last bought of symptoms, which have been a real doozy and very persistent, I've realized that I need to give myself grace. That I need to forgive myself when I miss my goal or fall short with my tasks or the people I care about. That's honestly the hardest part. Trying to grant myself the permission to slow down, or postpone a responsibility.
I started listing my symptoms at the beginning of my journal, and have filled two pages and started a third. And I read what other people are going through and all I want to do is try to give back to the world at large. Try to create some kind of beauty or compassion in the uncertainty of what is to come.
30 days to go before my MRI, and then hopefully my doctor will see what I see and I won't have to fight to advocate for myself. I appreciate that I can be a part of this community despite my lack of answers. I appreciate everyone here, and have spent the whole weekend reading through the various posts and comments. Much love to all!I am so sorry, I completely missed your reply on the thread. How are you? Have you made any progress with your appointments? Unfortunately my MRI didn't really help, but we only scanned the brain and not the cervical or thoracic spine, and I've come to learn that my primary symptoms are usually tied to lesions in the cervical spine. So back I go to the neurologist in two weeks. I'm hoping the best for you! 💜 it took me years to get a diagnosis. I know exactly how that feels. It’s exhausting it humiliating and it’s not fair especially, when you need treatment and time matters. Keep fighting keep going. I hate it going to the doctor. I hated feeling of being belittled at times. it’s hard when you know there’s something wrong, but nobody is listening. You will get there by some. caring person, you will get there. I go to Dr. LaGanke in Alabama. I recommend him to anyone looking for a diagnosis. He is a lifesaver to say the least I drive 12 hours there and back and it’s worth every second of every minute. It’s funny, I was thrilled to get an answer. It doesn’t last long though. Once you do, you realize what ahead of you you almost wish they could take it back. I will tell you this it’s not in your head. It’s very real don’t give up on yourself , fight!
My anxiety is causing all of my symptoms to be worse daily. I'm not loving it. But I am wondering, can anyone tell me (on average) how long it takes for the MRI results? And how are the results conveyed? Just an update on my chart to read, a phone call, a request for a follow up appointment?
I'm giving myself grace and allowing myself to fall short without calling myself a failure. I've started singing horribly at the top of my lungs in the car so no one has to hear to let out the emotion without crying.
Much love and respect to all!call them!! I do plan on reaching out to the research hospital for more information and to put out feelers. They have a good interactive website and they actually respond, so I'm going that route at the moment. I want to wait for my appointment before I make any big moves... don't want to end up being the patient no one wants to see. I have called my neurologist office and requested to be added to the wait-list if any cancellations come up in the next two weeks.
After the appointment, depending on how it goes, all bets are off. But I am hoping that it goes my way 🤞.
💜💜
it really is a mixed blessing. I'm happy that my brain currently has no damage. But I'm devastated that my neurologist really doesn't seem interested in further testing. I know that what I'm experiencing isn't just in my head, it's not just stress, it's not just me pushing myself too hard. And all I really want at this moment is to get all the tests, check all the boxes, and see where I end up. If MS is my path, I want to know now so that we can start treatments and start planning for a potentially altered future than I envisioned. I just didn't want to have to fight for it.
I think that you are amazing, and I love seeing your responses. Not just to me, but to all the people making posts on here. You take the time and energy to spread the positive too, and it's individuals like you that make our world a better place. 💜
