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Any experience with #Lupus #SLE #CNS?


Note: I first wrote this for Fetlife and decided to post here to update those that follow me and possibly reach a wider audience with the health issues I live with

 

Update first and question at the end 🙂

I still have yet to be FULLY diagnosed
what I have so far from seeing GP, Specialist and Neurologist…

1. ANA is at 1:640

2. As of right now I only have 4 of the symptoms for lupus but the specialist is willing to call it lupus (if I could get my records from children’s hospital in the states it would help but that is so damn slow!!!)

3. Had a PET scan done which PROVED!!! that I have PTSD but no one believes me when I say it is because of all the trauma/mistreatment from doctors for 21 years.
The PET scan showed areas of the brain with reduced oxygen/blood flow

4. The neurologist found my ability to distance myself from the pain very fascinating and ordered an MRI of my brain (omg that was fucking cool! loved the binary beats and the sounds and…I wanna do it again!!)

5. was hospitalize end of march for almost 3wks because of a massive flare up and started on new meds ( Esoméprazole 20mg to protect stomach, Kétoprofène 100mg 2/day for pain, Clomipramine 75mg for brain I guess, continuing Tolexine 50mg to help with skin…sorry those are the French names)

6. Still no idea what the MRI says but word on the grape vine (yay for having a hubby with contacts at the hospital) I will most likely be diagnosed with Lupus SLE in the central nervous system (CNS)

7. if I do too much now that I am on the new meds, I really feel it, tried having sex the other week with the hubby…. omg I thought I was going to die
it has never EVER been like this

My brain started to overheat and hurt…not headache but BRAIN PAIN, I could barely breath, I lost almost all ability to use words, some hand gestures I could do, I could not stop crying (body crying vs me having emotional melt down), some parts of me kept twitching but not like a seizure, I could not stop being in the fetal position on my side and rocking….

Took me almost a half hour to calm down my body
my conscious mind was watching this and going “whoa wth!!!”

I don’t have multiple personalities or anything like that, I just have YEARS of analyzing how my body is involuntarily reacting and this was the worst!

So… my question:

1. Do any of you have experience specifically with Lupus SLE CNS?

2. Any experience with the drugs I am taking (USA versions or what not)

3. Anything you can offer me for help in anyway…

Thanks

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