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Read everything you can about the disease but be careful with your sources. Read from trusted organisations such as NHS, Web MD, the transverse myelitis society, brain and spine foundation. Remember the old adage, knowledge is power!
Push for the things you need, such as scans, neuro physio, referral to good neurologist, continence service, urology, equipment ....etc.
Accept anything that's offered, it may prove beneficial even if at first sight seems inappropriate.
If in the UK, try to get access to the benefits advisor with your local council. If you need to apply for PiP for example, a good advisor is worth their weight in gold.
See the previous answer re surrounding yourself with people who care about you