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My doctors really thought I had dysautonomia (POTS)

Almost every doctor I went to other than my neurologist thought I had dysautonomia (POTS). I did my table tilt test and everything came back normal. I have the symptoms plus more which I didn't really think I had pots bc of this. I have sweats, lightheaded, dizzy, fatigue bodyaches, headaches, I have fainted once, brain fog, GI issues, fevers, night sweats, low blood pressure, face rash (comes and goes), joint pain (I woke up on night in extreme pain bc my shoulder popped), bodyaches, nausea, heart beat changes either fast or slow depending, my ankle as swelled as well as my hand and wrist, headaches. I have a positive ANA test. Is it possible that instead of having dysautonomia I could have an auto immune disease that's mimicking dysautonomia symptoms? I feel confused.. Everything just keeps coming back normal, and I'm getting no answers. I'm so exhausted and in pain everyday and lightheaded.. #AutonomicDysfunction #Lupus #ChronicFatigue #Dysautonomia #Ana

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Diagnosis

The Neurologist found Neuropathy in my legs and feet. Next, blood testing. I've gotten a few tests back, some were sent out. A few elevated proteins, positive ANA, high sed rate, all pointing to inflammation. His best guess was a connective tissue disease and not MS. He also thought I might have secondary Erythromelalgia. (No surprise there)

I just hope they find out what's causing my neuropathy. My feet are worse than I thought. Kind of scary..

I started out on gabapentin, and it has helped with the pain, which is good news :-) I know there's so much going on in the world and I continue to keep Ukraine, its people, in my thoughts and prayers.

Soon I add to PT , steroid injections in my back and chiropractor visits for Kyposis, etc. Not really sure how this will pan out, especially the 3 hour round trip drive :S

Guess I'll stop bitchn and just do my best. Kinda nervous though! #PeripheralNeuropathy #ukraine #peace #Anxiety #PTSD #Depression #MentalHealth #RareDisease #ChronicPain #ChronicIllness #Erythromelalgia #CheckInWithMe #MightyPets #Migraine #Upallnight #Neuropathy #DistractMe #SpoonieHacks #Trauma #Vasculitis #Ana #kyposis #Arthritis #Inflammation

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numbers (#ED poem)

Numbers.

You shaped me into something I can’t stand
And I try not to hate you for it.
But it’s no that simple when I can’t look myself in the mirror.
I burst into tears when I see the reflection.
How can that be me? Someone so disgraceful.

I quickly separated my ankles, I can’t let my thighs be this close.
I’m so cold but I must endure, cause my ribs are not visible at all.
And my hair may be falling, but at least I’m getting smaller.
Well, that’s what they say.
Cause when I look in the mirror that’s not what I see.
I can only feel skin where my bones should be,
and have scars in places no one can feel.

I don’t like what I am becoming.
Being so focused on my body.
I’m rotting on the inside, but no one cares,
cause the looks are all that matter.

I’m getting too angry and quiet.
To dizzy to stay focused on your words
cause I’m too busy restricting from all.

The numbers in my mind are too loud,
they won’t let me hear your screams.
I just wanna disappear.

I can’t stay longer in my mind, who’s constantly tearing me apart.
Don’t look at my body, or I’m gonna cry once again.
Don’t you understand I truly hate myself?

I choke on water one more time, I need to full fill me at any cost.
But there’s no way to make the emptiness in my soul disappear.
Is really deep inside of me.

#ED #EatingDisorder #Anorexia #Anxiety #Ana

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Relapse #ED #Ana

I've really been struggling with maintaining a healthy eating schedule. I've been going back and forth between fasting and binging. I'm going on vacation soon, and it's been stuck in my mind I need to make myself look good.
#CheckInWithMe

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Do More Answers = Harder Exam? 🤔

Hi Everyone - wow, it’s been a month since I posted on here. 💁🏼‍♀️ A lot happened since then. Last I wrote, I tested positive for #EpsteinbarrVirus and #Lupus from a positive #Ana . Well, from that appointment, it was suggested I see a #Rheumatologist. Great. 👍

I scheduled an appointment with the doctor they recommended. Unfortunately, the appointment was 6 weeks away. I thought, well, what the heck is another 6 weeks, right? I did manage to get myself on a cancellation list.

After 2 weeks, I started to get weird symptoms, such as intermitten #Jointpain . Pain so bad that I went to the urgent care for treatment. They actually turned me away because it didn’t seem broken, and to follow-up with my Rheumatologist. Yeah, but it’s still 4-weeks away!

So I called around and found a Rheumatologist that could see me the following Friday. Perfect! That next day, the 1st Rheumatologist office called and said they had a cancellation and could I get there in an hour? Um, yes. I decided to keep both appointments, because a second opinion is always good, right?

The first Rheumatologist looked at my labs. She didn’t think I had #Lupus but maybe #Fibromyalgia. I don’t know - I thought. I wasn’t in that much pain. I also asked her why my face sometimes burned? She said “stage fright.” Ha! She didn’t know public speaking is part of my career. She schedule me to have my labs done again to see if any other markers came up, besides only the #dsDNA .

That Friday I went to see Rheumatologist #2. it was interesting as she asked more questions about my vitamins, if my neck was stiff, she even tested my for #POTS . She focused on another direction than the 1st Rheumatologist. She suspected I had a bacteria, or #LymeDisease. I didn’t know what to think, because I already tested negative for Lyme. But she was going to do a more detailed exam.

Fast forward to the following week. My birthday. I got both results from both doctors. I tested positive again for #ActiveEpsteinBarrVirus , I had more positive #ANAs , and this time - yup, positive for Lyme.

The 2nd Rheumatologist started treatment for Lyme with 3 weeks of #Doxycycline . I so immediately cancelled my appointment with the 1st Rheumatologist. During all this, I had a Pap Smear with my OB/GYN. This came back abnormal and I tested positive for #HPV. Jees.... at this point, I felt like a Petri dish. I am having a #colposcopy done next month. Basically they want to examine my lady parts closer to see if anything looks suspicious.

So, that’s all the excitement from the last 6 weeks. 2020 is 2 weeks away and just want to be an overall healthier person. ❤️

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