Ratings for Rare Cerebrovascular Disease

[Chinook4]

Hi everyone, I’ve just been informed that I’m headed to a medboard. I’m just getting started on this process and am tricare remote so have been only dealing with civilian doctors and basically am totally unfamiliar with the process. I was wondering if anyone has faced a similar situation to mine or might have insight into what my ratings might be, I’m just trying to plan my future. My medical command told me they thought I’d be rated fairly high but I’m not really sure. Nearly a year ago I was found to have severe vasospasm in several vessels in my brain that was causing the vessels to constrict. It took several months to diagnose me with recurrent reversible cerebral vasoconstriction syndrome (RVCS). That condition normally goes away in 3 months with little chance of returning but mine has persisted this entire time leading me to have an even rarer recurrent form of this disease. Most doctors I’ve seen have never heard of this condition or ever seen a case go on this long. I finally found a cerebrovascular specialist that is very familiar with the condition and they told me that even if the current bout of vasospasm stops there is no way to prevent it from coming back given my particular case. This condition has caused suspected transient ischemic attacks, cognitive and memory issues, ringing in my ears, extremely high anxiety and most impacting me are incredibly severe constant headaches. The headaches have been labeled as new persistent daily headache. No medication has so far helped the headaches at all. I’ve been hospitalized for a week twice due to suspected/concern for strokes or bleeds and headache pain. I’ve been on medical leave for the last 11 months and unable to work at all. My doctor believes the rcvs was caused by on duty diving. There is no VA code for rcvs or new persistent daily headaches so I was wondering if anyone has ever had those conditions rated or might have any idea what they would be rated? The last year has been tough and I’m pretty stressed about the medboard process on top of dealing with these medical issues. Thanks for any help you might be able to give me!