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Damdannie

2y ago

Looking for Others Who Can Relate to My Misdiagnosis and Transgender Identity

I was misdiagnosed for 6 years. I just found out, last year that I have this. I would like to find others who I can relate to. are there any in Arkansas and is transgender as well?

Your answer

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goldengirl1205

2y ago

I have only been seeing my rheumatologist 1.5yrs. She's been "suspecting" MS but thinking we could just rule it out. But cognitive/neurological stuff has gotten worse not better so now waiting on insurance to approve neurology for the MRIs and scans.
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Blue_Star

2y ago

I hope that your insurance approves and approves soon so you can get this figured out!
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goldengirl1205

2y ago

Hercules, same to you. I am brand new to this app so bare with me lol I'd say my biggest struggle is not knowing for sure if I hv lupus, MS or both. The cognitive stuff is what I despise the most. Days where my brain isn't working or just won't connect. I'd rather have more pain than a bad brain day. I hate never knowing if I'm going to hv a good day or not. How long did it take you to get a definitive diagnosis?
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Blue_Star

2y ago

Hey - so I can’t even imagine how frustrating it is to not know what you have. Questions: have you had an MRI? If so, did you have any lesions? If you haven’t had one, why not? I wanna help you get diagnosed! 👍
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Damdannie

2y ago

Hey y'all! I'm so very excited to have supporters and to finally find a few people who can mother fucking relate, guys. I live in a homeless shelter, working odd jobs soon to pay for rent while my disability case on as a claim, calls back. I reapplied for it two months ago. Please inbox me if you wanna rant or relate about shit . I don't know, just be there for each other. Bullshit lol. My gabapentin was actually stolen, along with my backpack.. from under my fucking bed. I've been mf smoking like a clowd train to deal with the palm. I've been searching for 30%+; bud for this. It's not strong enough and it's from Oklahoma. Idk wtf to do guys. Just got my gabas and remember, I hadn't taken them for two weeks, and I take over 1200 and I'm screwed right now. Well yeah that's my life but just about what's going on in my life.
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Blue_Star

2y ago

Bless your heart! That’s a lot to deal with!!! I’m glad we can all be here for each other. In terms of prescriptions, have you tried anything other than gabapentin? Is it specifically MS pain or do you know?
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Hercules

2y ago

Goldengirl1205 I live in Louisiana to and I was diagnosed with ms about 2 years ago and I also have no one to talk to you can send me a message anytime
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Blue_Star

2y ago

Hi ✋, we all seem to be in similar boats here, so just wanted to say hello!
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goldengirl1205

2y ago

Hi, I am in nw Louisiana! I have been I treatment for systemic lupus for a few years and trying to "rule out" MS. I almost feel like I've diagnosed myself bc I seem to relate more to the MS symptoms more than SLE. They say they mimic eachother 🤷🏼‍♀️Who knows how long I'll be living in the in between. But I don't really hv anyone to talk to about these things, my husband is extremely supportive but he can only say "whatever it is ive always got your back& we'll face it together " I need to be able to talk to people living in the in between as I am.. What were being treated for in your wrong diagnosis?
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Blue_Star

2y ago

Hi Damdannie! I’m so sorry you had to suffer for so long before being diagnosed! I’m not in Arkansas and I’m not transgender, BUT, I’m here to be your friend and help with any questions you might have and to provide support! I was diagnosed at the beginning of 2018 reach out if you’d like to 🤗

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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