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TeacupMouse

496d

I feel like the worst part of the chronic illness journey is the waiting to find out exactly what's wrong. I saw my rhuemetologist last October after a year and a half wait, and was given a number of suspects, it might be this, that or all of the above etc. All I know so far is that I have Fibromyalgia, a hypermobility syndrome, my doctor says it seems like Ehlers-Danlos, my rhumey says I look more marfanoid. The referral waits in the UK are so long at the moment, I'm waiting for echocardiogram, pots testing. My bloods come back with low vit D, B12, low platelets and high Anti-CCP Antibodies but no one knows why yet. Lupus and Rhumatoid Arthritis are potential suspects. But potential doesn't really help at all, I don't want to worry over what might or not be. I see the specialist again next week, hoping for more answers but I'm so exhausted. 😞 Things seem to be getting worse rather than better, and I know I'm likely going to have a lot longer before I get my definite answers. A label isn't important as such, but at least if we know what it is, you can take the steps to the right kind of management or treatment options. I'm so grateful I'm finally getting help after being gaslighted by doctors for years, but it should have been recognised sooner, it's just sad and lonely right now. So scared damage is being done while I'm just waiting around for these tests.

    • Wanderinglumos

      496d

      Sending love to you! It’s so hard to wait and have so many questions while you continue to not feel well. I hope that your appointment next week can give you some more support. I have pots and hypermobile eds and also had lower b12 and vitamin D on blood tests. I’m sorry you’re feeling sad and lonely, I’ve been feeling that way too. If you need a friend to talk to my messages are always open🫶🏼

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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It's understandable that waiting for a diagnosis can be frustrating and exhausting. It's important to have a clear understanding of your condition in order to pursue the right treatment options. In the meantime, continue seeking help from medical professionals and try to stay positive as you navigate through this challenging journey.

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