rarecondition

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#rarecondition

I'm not sure, but there might be some triggers in here...

I had a craniotomy in Feb 2021 to remove a malignant glioma from my right frontal lobe. I was lucky that it was fully encapsulated & was fully removed. My oncologist ordered a PET scan & a slew of MRIs.. found absolutely nothing! So my doctor ran some genetic tests & discovered that I'm missing 2 proteins, which is Extremely rare.. it doesn't even have a name!

I'm feeling Very frustrated, isolated & overwhelmed, not to mention weepy at the drop of a hat.#rarecondition #overwhelmed #scared #depressed

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Lone wolf

Never been one to ask for help, the strong one in the family but lately, whatever this is: depression or anxiety or both, they are stronger than anything i've had to deal with and now "the strongest one in the family" feels like not existing anymore.

#Depression #Anxiety #alone #rarecondition

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I'm allergic to mint and cinnamon toothpaste! BE AWARE!!

I'm allergic to mint and cinnamon toothpaste, sounds unreal but its true! I was always told at a young age to brush my teeth but every time I did, it would burn so bad I'd cry. It burned for TEN MINUTES and thats just for most of the pain to go away. My mouth would PEEL every time but my parents assured me its simply because I don't brush often (and why should I since it burned like someone touched me with the tip of a hot glue gun?) So I stopped brushing as often for years and got cavities after cavities. I continued through the pain for days after my parents kept assuring me it was fine at around 16 years old BUT It got so bad I BURNED HOLES in the cheeks of my inner mouth. I went to the dentist and remembered to let him know about the burning and the holes, in which he replied "you're allergic to mint and cinnamon toothpaste, a rare condition you got there" I looked for adult toothpaste (since there is more in an adult toothpaste tube) without mint or cinnamon and found NONE. I had to buy children's toothpaste since, ya know the kind where everyone thinks you got a child because of the unicorn toothpaste decal? I'd have a long and exhausting conversation about my rare condition each time when I had to explain I had no kids I just have a condition with my mouth which people looked grossed out or seem to not believe.

##toothpaste #burns #InsideTheMighty #TheMighty #Awareness #Rare #rarecondition

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Possible diagnosis? Looking for advice

My doctor is convinced that I have a auto immune/rheumatoid disease (primarily seronegative RA on top of my other conditions) but after today's appointment he seems to think it's Dermatomyositis too. I've done a little research but can't find much about it. I'm looking for some insight to see if my experiences match up with others with this condition and how their doctors handled it. I had blood work done again today (waiting on results and a rheumatology appointment) and I'm really nervous about this.
#Dermatomyositis #rarecondition #Undiagnosed #skindisorders

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