Recessive ISPD limb girdle muscular dystrophy formerly 2 U help
Hi all I’m new to the community, 23F college kid in Northern California and was diagnosed fairly recently about 2 1/2 years ago with limb girdle muscular dystrophy except it wasn’t until fairly recent that my muscle biopsy came back more specific ISPD related recessive what is former known as 2U subtype. I just switched to UC and my neuromuscular specialist literally said first visit I “won the worst genetic lottery😃” anyhow she prescribed me some medicine for myasthenia gravis but to be frank my condition is progressing quite aggressively just within a couple years. I’m now barely able to walk upstairs or walk long distances or get up from a bathtub without difficulty. As far as I know, there are also no clinical trials for ISPD recessive, limb girdle. Has anyone found anything to be helpful with this rare sub type? i’ve heard of experimental stuff like sugar protein medicine, WBV benefit, bee venom benefits stuff that drs don’t really care to discuss if it’s not federally approved but I definitely am interested in holistic care. Ultimately, I have little to no familial support, and broke on Medi-Cal and food stamps no money even for college tuition and all for what? To be miserable behind a desk to an inevitable wheelchair in like 10 years time? I do try my hardest to stay appreciative most days for the limited mobility I do have left. I’ve tried everything it seems, my health has become a full-time job, I’m exhausted and it’s not even “that bad“ yet / already at almost full capacity. I think I might reach out to MDA about palliative care + services. If you read this far, thank you and if anyone has any advice or kind words, I’d appreciate it. Take care