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Meganitis, a beginners guide

Hello Everyone!

In the past week , I have had to try to explain Meganitis to new people that have come into my life. And I realized, its really difficult to explain this undiagnosed disease/disorder/sickness to people. So , in the neverending quest to get the information out there regarding this illness in the hopes there could be someone else with the same affliction and I could finally get a diagnosis. So here goes…

What is Meganitis?

Meganitis is the name I have given to a sickness that started in 2014. It started with enlarged lymph nodes. Multiple scans and tests, biopsies and the end result was inconclusive. That lead to more doctors, more tests and more scans, this time in Boston. Again , no answers. All tests showed that something was wrong , but nothing indicated what it was. Symptoms happen in a flare up and flare down situation. Unfortunately, this has not subsided and the symptoms continue to plague me to this day.

What are the symptoms?

*enlarged and sore lymph nodes

*whole body soreness

*extremely hot ( fireskin ) or freezing ( icicle skin )

*rash ( this was very early on and has only happened few times since beginning )

*night sweats

*advanced exhaustion

*elevated SED rate (bloodwork)

*elevated CRP ( bloodwork)

Is there a cure?

No. No cure as we do not know what it is.

Is there a treatment?

Yes. Thankfully. I have tried Prednisone, Metheltrexate (pills and injections ), Actemra, Humira – all failed. Currently treatment is Rituxan. I go for the infusions every 4 months.

Can I catch Meganitis?

No, you are not Megan.

I hope this helps in trying to explain Meganitis. I will keep you updated if we ever find a answer.