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LRP4: compare symptoms?
Still in a rollercoaster, but I got positive for LRP4 in September, and I’m building up a low dosage of Mestinon (start tomorrow with 30 mg: had 10 and 20 previous to check interaction with my heart condition). I can’t seem to find other LRP4 positive patients in the Netherlands (so far) so I hope I can find some on this platform to compare symptoms etc.
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6 Replies
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I live in Colorado and was diagnosed with LRP4 on 11/25. My main symptom is that I can’t hold my head up when standing or walking. I wear prisms for double vision, have weakness, and am unusually tired.
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I had an EMG (Electromyography) and NCV (nerve conduction) test to determine LRP4. I’m scheduled for repeat and follow-up studies next month in a larger city (Denver, Colorado). LRP4 is very rare, and I haven’t found much about it or people who have it. Also, my specific symptom of head/neck drop is rare, and I’m really struggling with daily activities. None of the medications I have tried have helped, and I am currently having IVIG infusions every three weeks. Thus far, no change. Good luck to you, and I would love to stay in contact to see how you are doing.
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Was it difficult to get tested?
Do you know others with this variety?
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Same: there is much to learn from others, I guess.
I am rather tired and a bit fed up in trying to keep sharing my symptoms with doctors who first respons is that it’s not very typical.
It would be helpful to share them. I wrote quite a large document (8 pages) that Claude might Translate to English. Is there a way to upload documents? I’ll see if I can adjust the tekst soon.
One of the things I noticed, is that my proprioception seems to improve a bit with the low dosage of Mestinon I take. I have been complaining about increasing “numbness” in my legs when I exercise; it starts to feel wobbly and I don’s seem to get normal feedback from my knees (where they are). When I let AI search if there was a relation whit Mestinon and improving proprioception, I found articles about specifically LRP4 in mice that does connect with proprioception. But since you have ocular MG, you probably don’t recognise anything?
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Can someone tell me the difference between gMG and LRP4?.Im not sure how they differ. I was diagnosed with general MG in June. I’ve not heard of LRP4.
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