The most troublesome condition is the demyelinating polyneuropathy that is similar to CIDP (inflammation of nerve roots and peripheral nerves and destruction of the fatty protective covering (myelin sheath) over the nerves). Since being diagnosed, not a day has gone by that AJ has not lived with severe nerve pain, exhaustion, weakness, tremors, and the inability to stand for prolonged periods. Treatment options are limited. She has tried several medications: antidepressants (for nerve pain), antiepileptic drugs, opioids, patches/creams and physical therapy. None of which have helped.
What helps is IVIG (intravenous immunoglobulin) therapy which costs over $20,000 per treatment - treatments are every 3 weeks. IVIG calms the immune system that is attacking the nerves, allowing AJ to walk.
The VA has told AJ that her condition(s) is too complex, so they are supposed to refer her to a civilian provider so she can still be covered by the VA – but she has not been able to get them to do that so far. She is working very hard on this. In the meantime, she is using private insurance, which is why it is so expensive.
****At this point, AJ is $2,500 behind on her medical bills, and her doctor/treatment office will not allow her to receive her next IV treatment until she pays that off.****
Once she can get a referral from the VA, then her treatments will be covered.
In the meantime, AJ is looking into lower cost IV treatments and new therapies including one called a Scrambler, which reorganizes the pain system in the body by replacing the pain signals with “non-pain” signals.
But she needs her next IV treatment soon.
AJ is always helping other people. She is a kind and humble person.
Can you spare a little bit to help a Gulf War veteran? Any little bit helps. It should not be this difficult for a veteran to get help and treatment.
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