I was diagnosed with MS about 4 years ago after an unexpected case of Bells Palsy. I'm 32 years old now, and I guess its time to stop living in denial that I have MS.
I'm in flare up mode right now, and the pain and fatigue levels are through the roof. Unfortunately, I don't have insurance, so I am trying to just suffer through. I don't know what else I can do.
I make too much for medicare/medicaid, but not enough to pay for treatment.
To make matters more fun, everyone in my life tries to "fix" me if I ever mention the MS. One friend went grain free for her own diet a year ago and is convinced that I have MS because I don't eat like her. Another tells me I don't have enough faith or I would be healed.
I DO have faith. That's what is so frustrating. I pray and pray, move and eat as best I can, and I still hurt. I'm so tired of everyone acting like this is my fault.
I'm on the verge of tears sitting here. I just don't know where to go from here.
Sorry to hear that you're suffering and that your support system is so uninformed about MS. It puts us in a very lonely place, and I'm glad you came here and reached out.
I'm concerned about your flare going untreated. Can you see your neuro for a steroid prescription? Oral prednisone is cheap. Your neuro appt. wouldn't be, though, but could you set up a payment plan for that?
Okay, on to your questions about getting help:
I was without insurance for several years and found access to health care in the following ways:
I found a private charity clinic in a neighboring county where I received free MS care with a neurologist as well as general care with an internist. It will take some research, but you could probably find such clinics, they are often founded (and funded) by a religious organization like the one I found.
The clinic had a relationship with a nearby Catholic hospital, and that had a Care For the Poor program. So I received free MRIs, blood work, an appt. with a urologist at the hospital, and even a free colonoscopy. Catholic hospitals usually do have such programs for the uninsured.
Other hospitals might offer a patient assistance program, too. The one I go to now for MRIs, etc. does have a needs-based discount program.
I got my MS disease-modifying drugs free of charge through the drug company's patient assistance program. All the pharmas who make our MS drugs offer generous assistance to uninsured patients.
Another funding source for MS therapies is the National Organization for Rare Disorders, or NORD. They can also help pay for your expensive MS drugs if you are uninsured or on COBRA.
Contact your local chapter of the National Multiple Sclerosis Society for suggestions, too, they are a good resource.
And don't forget your county health and human services department. They should have a free clinic, and though it is based on your income, you might check it out to see if you can get some basic care there. Even if you can't, they might be able to refer to you to private charity care in the county, they should be a good resource for info. But you've got to ask.
When I was uninsured, I found a lot of free care and I had no medical debt. Now that I am insured, I have a mountain of medical debt. I am on SSDI and Medicare now, and those out-of-pocket coinsurances do eat up my monthly check. So I have set up a low monthly payment schedule with all of my medical creditors (including my neuro) and have to make small payments to hospitals, radiologists, etc. They are willing to work with us.
In other words, you are in an ideal position to get free medical care as an uninsured patient. If you check out all of the resources I mentioned, I'm sure you could find some assistance.
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