I apologize for being cryptic, but I got some information from one of my doctors that very well may the answer we’ve been looking for. And I’m fucking terrified.

I really don’t want to put too much information on here right now until I know for certain. I mean. I know I have something, right now. But. I don’t know how bad it is or how it’s going to effect me long term or if it’s going to at all. It might. It might not. It’s up in the air right now.

I am having surgery. I don’t know when yet. As of now, I’m scheduled to see a surgeon, to TALK to him to lay out the course of action, not the actual surgery, on May 7th.

I’m okay. I’m going to be okay. Please don’t think I’m laying around crying because I’m not. Am I scared? Yes. I think that’s a given. But I’ve been scared since I got sick. To have a name put in front of me, a name I know, just kind of magnifies things. And for all I know, this isn’t it. And I’ll go right back to being frustrated because no one knows wtf is wrong with me. But sitting around worrying isn’t going to help me, and I know that. So.

Certain people, if you want to know more, feel free to send me a private message or e-mail. If I don't answer you back, don't be offended. Sooner or later, I'll let everyone know what's going on.

Love ya’ll. Please never take a day of good health for granted.

Saw the Dermatologist.

And had four moles removed, including the one on my collar bone that has gotten bigger and bigger and always catches on my clothes and bleeds and I poke all the time. It’s gonna be weird not having it lol she’s pretty sure it’s harmless, but for the fact it bleeds a lot, we took it off.

Then three off my back that apparently didn’t look nice. I have a family history of melanoma so, she was pretty intent on getting those biopsied. And it’s a painless procedure, getting them off. Just a quick needle poke, then you’re numb, so.

Fun part was my feet turned purple. She kept asking if I was cold and I was like “No?” and then she goes “Your feet are purple.” and we were like .

And my blood pressure was 130/110? So IDK what was going on there.  I was perfectly calm and I took my medication.

But of course, after she listened to me talk (she was asking about all my symptoms) she goes “Have you had a full work up for MS?” REGNHDKL:BMD gonna throw. Everything. NO I HAVEN’T. APPARENTLY. And she even thinks my brain MRI should be redone.

Also she thinks I should look into going to a university setting where a bunch of doctors can examine me cause I’ve apparently got a ton of shit going on but no one knows what, and she agreed with the second opinion for a neuro. She said she’d even call me if she thought of something.

Otherwise, she’s just gonna take care of my skin. Oh. And I showed her my tongue. She has NO IDEA wtf is wrong with it. No one does. It’s inflamed that’s about all we have on it right now. I’m still using the prescription mouth wash I was given, but, so far it hasn’t helped any.

blaaaaah

Neuro on Thursday. Hopefully he's not useless.

My ENG was completely normal and my tongue biopsy said “her tongue is inflamed.”

He then sat with me for a few minutes, while I talked, I even showed him my MRI report of my head and he goes, “You’re seeing a neurologist right?” and I tell him yes, but my neuro is kind of. 8| and my dad says that we’ve been thinking of finding a new one. So, we get referred by this guy to a new one on the spot. And I have an appointment with him on May 2nd.

Which is good, sometimes with specialists it’s like, you gotta wait 3 months to get in. So, getting in one week to see a Neurologist? A+ AND. So happens this guy is in the same group (not the same office) as my old neuro, so he has access to all my records and tests my other neuro did. GOOD. ENT was like "Where is your neurologist in all this?????" good question

The person who made my appointment was kind of amusing too. Like she sounded so unsurprised that I wanted a second opinion after seeing Doctor Orr (my previous neuro). How comforting.

But on the bright side, my dad bought me gummy worms. And pizza.

Sigh.

Saw Pain Management doctor. I'm having two Steroid injections into my spine. He said considering the level of my pain and the way I describe it, it sounds like nerve pain and this is a shot gun approach to treating it. The first one is on May 6th No rush or anything. And guess the fuck what? He got a hold of my MRI of my lower back? My Neurologist DID misread it, just like the first one, and my so called 'ripped discs' are just protrusions many normal people have. All it provided is where the disc PM doctor is going to give the injection.

He said it's usually in rounds of three, but we're starting with two. If it doesn't do a thing for my pain, we're stopping at two and my next step he says is he will make sure I get a lumbar puncture. What that is, is when they take a sample of your spinal fluid and test it. He said he's quite honestly shocked no one has done it yet, but my neurologist is kind of good for nothing as we've all noticed.

I'm also getting 24 hour release tramadol to try, which he said shouldn't give me the high (and I can still take my concentrated doses of tramadol and muscle relaxers for break through pain). He's also giving me an anti-depressant for nerve pain + to help me sleep because I've been battling insomnia. We're concerned about this one. My body haaaates anti-depressants/anti-anxiety medication with such a passion. Which I told him. SO he also did a genetic test (swabbed my mouth) for medication intolerance and such. He said it's really detailed and thinks it'll be interesting to see the results.

He would not. Shut up. About multiple sclerosis. Like, I wanted to just lay down on the floor and curl into a ball. Cause, My dad said, "She's had MRI's though." and he said, "Yeah that's the best test for it, but that doesn't rule it out. She doesn't have textbook presentation but she's definitely got signs, that's why I think she needs the spinal fluid testing." And I think my emotions about it were showing through on my face because at one point he was like, "Are you depressed, with all this going on?" I wanted to shout "NO I'M DISTRESSED PLEASE STOP TALKING."

Cause my brain MRI says I have white matter lesions and my Neuro who apparently can't read MRI's corrently said that's from migraines but now I'm not so sure and I want someone to tell me yes or no on this. It keeps coming up. Every time I think it's off the table, it's not. And it scares the fuck out of me. Every doctor EVERY DOCTOR I see after I explain my symptoms says "Have you been tested for MS" that's like the first thing they all say, then this guy goes on and on about it and I just. I know it's not a death sentence, I know it can be managed, but it's still scary as hell.

And I feel like I can't even talk to my parents about this. My dad closes off. And my mom is just. I told her he thinks I need a lumbar puncture, and she went, "Uh. Why?" and laughed.

I just. I dunno. I have the ENG tomorrow. Which, shocker, is a test used in finding MS also (not just MS, but it's on the list). I want an answer. And I told this doctor that, and he said, "You may not get one." And THAT almost made me cry.