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Anyone have the FGFR3 antibody gene?

Neuropathy | Last Active: Apr 7 6:29pm | Replies (146)

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@rwinney

@adamek3638 Hello Kathy. Dear, dear, dear. you have alot on your plate. I'm so sorry for this. Have you been diagnosed with auto immune to qualify for IVIG? If not, have your drs mentioned plasmapheresis or lidocaine infusions? I'm wondering if you've had a spinal tap or skin punch biopsy? You are definitely in a tough spot but. keep persevering and fight for what you need. I wish you all the best in sorting out and making progress. You have support from Connect! Keep up posted and I'm here to chat anytime you need. Sending positive thoughts your way. 🌈
Rachel

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Replies to "@adamek3638 Hello Kathy. Dear, dear, dear. you have alot on your plate. I'm so sorry for..."

I had my blood test taken in Boston in November. I received results in January while away for Christmas. I went to hospital immediately with them but no one acknowledged these results and my symptoms of autonomic dysfunction, pins and needles, rash, weakness, fatigue, dizziness, blackouts and vasovagal syncope - they took as 'psychosomatic' That's the worst thing you want to hear feeling like that. I was in rheumatology hospital but didn't qualify for IV, because my rheumatology results came negative. I self medicate with gabapentin, Vit C & saline infusion and waited for the pain to calm down. Looks like I had a flare back then, but no one was able to help me without positive tests acknowledged by medical programs.