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Della's Mystery Neurological Illness vs American Healthcare

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Our family is drowning in medical bills for my wife Della's mystery neurological condition which may be (but is not yet certainly) multiple sclerosis, and the costs of many MRIs, CTs, appointments and exploratory procedures has become too much for us to afford without asking for help.

The week before last Thanksgiving, Della developed a blind spot in her left eye. This was after several months of other seemingly unrelated symptoms like worsening asthma, fatigue, tremors, and hematuria. (To spare you a search, hematuria is bloody urine. Which she has all the time. For no reason. We are not having fun! I'm sorry / you're welcome for this much information!)

Initially Della was sent to ophthalmology with a suspected retinal detachment, but then the ophthalmologists (read: multiple; many; so many very kind, very educated eye doctors who took so many very detailed, very impressive eye pictures) informed us that the retina was...fine, and that while they could see where the blind spot was through visual field tests, they could find no structural reason for it. All of the eye structures were fine, actually. Which sounded awesome! For the first fifteen seconds, anyway, before they told us that in cases of no structural change, the reason for vision loss is probably neurological, possibly multiple sclerosis, and that all of her seemingly unrelated symptoms are probably all COMPLETELY related.

So we moved on to Neurology. The first MRIs, however, did not confirm multiple sclerosis; this, too, sounded really awesome for the first few seconds before we were told that the inability to confirm it at this stage doesn't mean it's NOT multiple sclerosis, it just means that Della exists in a kind of Mystery Neurological Illness Question Mark"™ land where many doctors agree that something bad is going on but no one agrees on what it is or can yet prove or disprove any theories. (She's an enigma! A riddle! A mystery woman absolutely losing it throughout this process!)

The CT scans we did do not show an explanation for the hematuria, which means they have to do a cystoscopy (aka - get all up there with a tiny camera), and if the cause of the hematuria is the neurological illness they probably won't find an explanation for it by scoping (but they will be able to eliminate the possibility of any cancers/growths that they might have missed with the CT).

A neuro-opthamologist will also attempt to figure out what a neurologist has not yet quite put together, but there are five total neuro-opthamologists in our entire state, so she had to wait months to see one. (Remember, this started in November and the appointment is at the end of this month. Hopefully they will have answers and those answers will be simple and not scary but, you know. Probably not at this stage.)

So - the initial MRIs don't show multiple sclerosis, which means they have to repeat brain and spinal MRIs after several months to see if whatever is going on becomes visible; regretfully, the MRIs did show a growth in the brain - which is either a boring, totally benign cyst which many people have without ever being in any danger - OR ELSE it is a growing tumor which will have to be removed because, you know, GROWING BRAIN TUMOR, and either way the only way to know is more MRIs.

Long story short: Something is seriously wrong with Della and she is sick all of the time in a decidedly uncool and frightening way, and in addition to being sick (her) and scared (us), all of these experts, specialists, procedures, and images are expensive, and we have become overwhelmed with the costs.

Just for example, each time she gets an MRI, it costs us $492 -- and yes, that is with 'good' insurance through my work. Given how long this has gone on, we are simply not going to make it without help. We cannot continue to pay for exploratory procedures, specialists, CTs, other images, appointment copays, medications for things like tremors and also continue sending her for $492 rides in the Big Loud Fancy MRI Machine™, but she also can't STOP taking $492 rides in the Big Loud Fancy MRI Machine™ because we need to know what is wrong with her.

So we are asking for help if you can give it. If you can help us, any amount will make a huge difference. If you can't or you're struggling too much with your own bills, we totally profoundly and completely get it; if you can share this fundraiser with your own network, that would be a huge help to us, too. Whatever the case is, we will keep you all updated on what we learn here. (We miss the week we thought her retina was detached. That was such a great week, and we didn't even know it.)

We love you all and thank you for your support.



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Mike Shirley-Donnelly
New Haven, CT

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