This Is MS Multiple Sclerosis Community: Knowledge & Support

I am at my wits end, and hoping for some help.

I work in EMS, so I know how things run with the healthcare system-- the good, the bad, the ugly. I'm getting some serious ugly right now and I don't know which way to turn to try to resolve it.

I presented with what they think is MS this past weekend, and spent three days in the hospital. They did MRI's of my brain (contrast and non-contrast) and had ordered one of my C-Spine as well as a lumbar puncture. The latter two diagnostics, were not done in the hospital, and I'm not sure why-- nor could I get an answer as to why not.

Moving along... I get discharged, no medication, and basically told to fend for myself-- all with protest, mind you. The best bit of "advice" (if you could call it that) that I was given, was "try not to put pressure on your elbows, it might help you get sensation back in your hands."

As it stands, I'm at home, unable to work, only feeling parts of my hands, and with blurred vision. The next appointment with a neuro-ophthalmologist I could get was April 7th, and scheduling an outpatient MRI is a complete and utter nightmare. I don't know what to do.

Do I go back to the hospital as an inpatient to get all this done? Do I wait? I can't afford to wait, financially or otherwise. I can hardly function, and I feel like I was tossed out and ditched. I wont even bother to plead mercy with providers because it's falling on deaf ears. I'm frustrated, tired, unable to eat properly or sleep properly for that matter.

I feel completely alone, and for the first time, abandoned by the field I choose to serve. Any advice?

EMT,

If I were you I'd press it more with the neuro-opthamologist that you are having some symptoms that are more urgent. The reason I say this is that I'd imagine once they get your firm diagnosis (of course if they get a firm diagnosis) then I would imagine they would try to do a course of steroids to try to knock your inflammation that sounds like may be causing optic neuritis. It's so hard to say since you don't have a firm diagnosis yet and I don't want to put you in front of that or feel safe to assume it as fact.

I would, however, let your neuro-optho know that you can't wait until April since you aren't working. Being an EMT, you are probably serving emergency patients and dealing with trauma. Don't feel abandoned by the hospital, MS is not usually something that is dealt with as trauma and, in my experience anyway, is more of a Drs office visit handled situation, and not emergency medicine. I don't know too many neuro's who treat their patients in a hospital for MS. I would spend a lot of time on here looking around in Introductions to see how the progression of diagnosis happens typically. It definitely feels like more of an emergency to us than it does to medical field and it sounds like you have some urgent needs so I'd be vocal about it, but maybe not at the hospital; maybe more at a neurologist or neuro-optho. Once you get a diagnosis and a neurologist, then if you have an attack like the one you're having that's keeping you down, it will be looked on as more urgent. Getting diagnosed is probably going to be your first hurdle.

Take a deep breath and spend some time on here reading about getting diagnosed. Knowledge is power and you want to see what to expect since it is looking like, from your description of what all you've had done, like they definitely suspect MS, but I'd be sure of the diagnosis and you probably will be on edge until you get a diagnosis. I hope you get some resolution soon, it sounds like you just feel like you've been left hanging. In my experience, the only way to get around that is to be your own advocate. Now that your in the 'suspected MS camp' your case is probably not looked at as an emergency, but if you feel like it needs to be looked at that way, it's pretty much up to you to be a sticky wheel.

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