Diagnosis is Neuro-Behcet's. I've started a new med (Otzela) this week- I'm very hopeful.  Ya'll, I broke out in sobs when the PA told me she had a medicine she thought would help. It's been a long road.  

The form I have mimics MS, but with treatment can go into remission.   Since I have a rare form of a rare disease, the treatment is a little wait and see and the diagnosis may change a little, but it's safe to say I have an autoimmune form of vasculitis that has CNS (central nervous system) involvement.  The rheumatologist says it presents exactly like MS, but I've been seen at the MS Center of Atlanta by an excellent Dr and all my tests (SO MANY MRIs, blood work, spinal tap) have been negative.  

The hydroxychloroquine has really helped my fibro and arthritis symptoms, so I've been feeling a lot better in general.  I'm still fatigued, but it feels like being tired instead of CRUSHING BOULDER fatigue.

My sleep apnea is  still untreated- that's a long story, but current hope is that the Otezla will resolve the lesions on my tongue and chill out my nasal passages swelling up at night. These things are making it impossible for me to use my sleep apnea dental appliance. 

My neuro symptoms get much better after my B12 shots, but I'm maxed out at 2 shots a month. It's unclear why this helps, but I'm glad it does.  I was having trouble walking before the neuro found high MMA level despite high doses oral B12 supplements.  The shot allows my body to absorb the B12 intramuscularly instead of through my intestines (the normal way). 

My EMDR therapy for PTSD along with CBT (cognitive behavioral therapy) has done wonders for my mental state. I feel generally well and happy in the brain department. I'm not through with treatment, but I now have tools.   I had to stop abruptly when my insurance was cancelled.

I lost my insurance in November. That's a whole other stupid bureaucratic nightmare - my former employer accidentally sent a cancellation notice to the company that manages my COBRA policy.  Once that happened, the COBRA company rescinded the extension I had on two months of premium coverage. They acknowledged that the policy was accidentally cancelled, but would not reinstate it unless I immediately paid the two months of premiums ($1400) I had an extension on.   So the insurance was cancelled and backdated to end Sept 30, so I now owe the full costs off all the visits I had in Oct, which unfortunately included some much needed dental work. 

EBT (food stamps) has been VERY helpful and it's the one social service that seems to be working. I applied for rental assistance in October, had trouble with the webform, put in a help ticket and JUST heard back about that. I apparently need to use Firefox for my application to properly submit.  So possibly there is some help there. 

As far as insurance goes, I was told my disability claim (applied for in June) was being processed in October and that I would get a decision in November.  Thankfully I have a firm handling the application- it's a perk left over from my previous job. The firm called yesterday to say that my claim handler is no longer working there and I now have a new claim handler.   So maybe I'll hear something soon? If disability is awarded, I get two years of Medicare, monthly payments and I'll get back payments from Feb 2021 when I was separated from job. 

I rescheduled my neuro and rheum follow ups twice hoping to have insurance by now. I  ended up having to pay out of pocket for the  recent visits.  I'm still waiting on a quote for the lab work I need done. It really shouldn't be this hard to access/afford medical care in America. 

If you don't have insurance or have crappy insurance I highly recommend the Kroger GoodRx savings club. It's $30 for the year, but I can still afford all of my meds.   They prob sell all your private health info to advertisers, but honestly, WHO DOESNT sell your info to advertisers?

 As always thank you for all the thoughts, prayers and good vibes. <3

Stay safe out there, I hope things are getting better for you too.