Undiagnosed and Frustrated
Urgh where to start. I have been on this road for way too long without being officially diagnosed. I feel like I have zero support and without a diagnosis and it feels like nobody believes me.
I currently take a plethora of pills trying to keep all my symptoms in check - things like fatigue, tingling, burning sensations, frequent urination, etc,
As far as the doctors go, below are some of the more recent comments:
- this looks like MS
- You have an autoimmune disease but we aren't sure which one
- It's MS but we aren't going to treat you because we are saving the treatments for those who really need it as they are expensive.
I feel like I am trying to navigate this blindly. I have no idea how to manage every day symptoms and absolutely no help from doctors or specialists. At this time my way of coping is plowing thru everything until I physically just can't do it anymore - I'm guessing this isn't the best approach.
Any tips or tricks would be appreciated.
K.
I am sorry for what you are experiencing. I'm on a similar path, undiagnosed and struggling.
It's hard. And it sucks.
Personally, I have received a diagnosis of fibromyalgia in my early 20s, around the time the big symptoms started. Then a lot of platitudes of 'it must be the fibromyalgia' as things progressed. And then 'it could be MS, but there's not enough evidence'. And now, functional neurological disorder. Twenty years and still no treatment, no meds, multiple doctors, no validation.
I feel your struggle. And I hope that things change for you, that you make some headway with your doctors.
Sending you much love and respect 💜 💜I forgot to mention the most important mindset perspective that has been so transformative for me. I have learned to forgive myself, and to give myself space and grace. There are days that I hit a mental wall that I just can't get past at that time. Recognizing that I'm at an impasse and allowing myself the emotional space to just stop for a little while has been huge.
I've always been a full steam ahead kind of gal, and giving myself permission to stop for a moment, for a day, heck-for a couple of days, has made a major difference with my emotional frame.
I would absolutely advocate for taking a moment every day to evaluate how important the thing or things that we are stressing about are, how much does it matter to get done now, where does it sit on the ladder of priorities. And then we all give ourselves grace when we don't reach the expectations we set for ourselves. 💜💜
you have done such amazing work from a mindset perspective. Thanks for sharing. I truly mind mindset to be have the battle. It's not something that changes overnight, when I start with an awareness and the desire to make a change, it helps me to start chipping away and rebuilding more supportive thoughts and beliefs. Thanks for this reminder and encouragement to me and our entire community.
Best
Alene (team member)
I'm sorry to hear that you're going through all of this. It's so challenging to get a diagnosis. While none of us want to be diagnosed with MS - or any disease - I do understand and agree that with it comes validation for all the symptoms that you're feeling. I'm glad that you connected in here with this community so that you can talk with people who truly get it and can relate not only with the symptoms but with the challenges of navigating the health care system. We truly have to become advocates for ourselves every step of the way. Have you been able to get an MRI from your doctor? The tricky part with MS is that there's no one test to definitively diagnosis it but MRIs and spinal taps are usually helpful.
Regardless, I hope that you're having grace with yourself through this process. It can be exhausting on so many levels, but you're doing a great job speaking up for yourself to get what you need. I wish it was just a shorter journey for you - and all of us!
Best
Alene (team member)
Thank you so much for your kind words. It is definitely a frustrating and lonely place to be. I am lucky enough that I regularly see a neurologist and have yearly trips to the MS clinic.
I have very few people in my life that have taken the time to understand what I am going thru and that I can turn to for support. Unfortunately my support at home and work is extremely limited - comments like everyone struggles in the mornings and you need to go to the doctor you're tired and haven't done anything, that's not normal are all things I hear and trying to explain things fall on deaf ears. I didn't realize having an invisible disease would be so hard.
I am slowly learning how to deal with some of my limitations and how to prevent them from getting out of control but I still fall back into that "I can do it all" mode. I think this is more to do with me not fully accepting I can't do it all - hard to change my way of thinking.
Like everyone else I don't want to have MS but there would definitely be some validation that I'm not crazy with a diagnosis. Also, while the doctor's are saying I'm stable right now that makes no sense to me as new symptoms have appeared over the last few years and the solution seems to be "here's some drugs for that".
So glad to have found this forum where I can ask questions and get some help dealing when needed. Thank you again for taking the time to replay and offer some words of comfort and support. (((Hugs)))and the journey is sometimes hard. Alene, you have given me some amazing support over the last year as I have struggled and finally reached out for community.
I feel a little weird typing CommunityMemberc9cebf, but I just wanted to say that you are stronger than you give yourself credit for. Any invisible disease or disorder brings a completely different level of challenges. Trying to communicate that we are struggling, while trying to not fall, falter, or fail our own expectations is hard. And reaching out, finding your own voice, acknowledging that you want community is humbling. I was terrified to reach out. I was so afraid that I would just be judged again by yet another person. I was terrified that I would be belittled for not having the validation of a diagnosis but having the audacity to tell my story. And I was so lonely (even with the amazing people in my life, they try but don't understand) that I found the courage to reach out anyway.
I'm so glad that you did, and I hope to hear more from you. And I am so sorry that you've been having a tough time. This community is so amazing, I hope you find some tools here for your bad days, so friends here for your every days, and some peace connecting with folks who understand. Sending much love and respect 💜 💜ahahaha I tagged the wrong person in my last response 🤣 the proof is in the pudding that sometimes the struggle is too real! I had such a hard time with my phone last night...
Thank you. I do find it hard that every time I have reached out for help on any level it feels like a door being slammed in my face and I got to the point where it felt like me against the world. So happy to have found this site that seems to have lots of information available and some very kind people who take the time offer some words of encouragement.
