When Life Goals Change
When Life Goals Change
Internal Hell: Burning from the inside out. A story to remind you to never give up and never give in until you get answers.
It’s been hell, literally, inside my body as I’ve been burning from the inside out for just over half my life now.
For nearly 16 years I was brushed off as a liar, a psychosomatic case, an anxious or depressed individual, that I’m too young and must be making up my symptoms.
What could amyome possibly have to gain by faking their illness?
To me, I lost everything! I had to change my career right after I graduated. I had been bedridden for 8 out of 15 years. I had a small child and was a single parent who didn’t have family to help.
I’d seen over 100 doctors in the last decade alone. Most of them say, “you’re a young woman of child bearing age, it’s obviously just anxiety.”
We’ve gone through the diagnostic odyssey of Lyme (equivocal), EBV (reactivated) which took 5 years of my life, genetic testing, doctors did all the same ANA and CMP and thyroid tests over, and over, and over again and they were almost always within normal limits.
I’ve been told it’s all in my head by Mayo Clinic who refused a formal written request for further testing, even after they diagnosed me with Ehlers Danlos Syndrome and confirmed Medullary Sponge Kidney Disease.
I found out that due to this autonomic dysfunction, I have a second degree heart block which has been symptomatic at rest and when standing. My heart randomly decides to reset which is on a whole other level of scary. My heart rate gets down to the 30s and up in the 190s.
Finally, I pushed for a different type of testing with a new neurological specialist. The golden standard of a biopsy for small fiber neuropathy.
Then took the results to a neuromuscular specialist and said what’s causing this? They took my blood and sent in for a WASHU panel and after patiently waiting 6-8 weeks it came back positive for two antibodies.
My TS-HDS was 80,000 and my Histone H3 was 2,100.
TS-HDS is an autoimmune heparin antibody and depending on the person it can have very different effects and bind to the blood vessels and even parts of the autonomic nervous system. It gets activated by anything that can set off the immune system. Childhood sicknesses make me bedridden for a week without a warning or even a sniffle.
Histone H3 is an antibody related to an ataxic gait syndrome that normally affects those ages 65+. Now I know why I have such difficulty walking. It’s so bad that I have opted for a power wheelchair that I use now because I move like a sloth and it’s painful.
It’s given my back my mobility in a way I never thought I’d have again. But honestly; the best part is validation.
I finally have answers and proof that this is very real and not just anxiety. Sure, I had some anxiety in not knowing what was wrong. Any person who cares about their daily functional capacity being reduced with no answers would, in my opinion.
But this is different, this is on paper and real. I’m currently waiting for insurance approval for IVIG therapy. The neuromuscular doctor thinks it may help.
I wanted to share my story because it’s been hell. Physically and mentally. It’s draining and exhausting when you’re already exhausted. I know it. I’ve been there. I’m still there.
You have to be your own advocate. You can research potential conditions and request that your doctor rule them out.
Just know, that there is hope. One day you will get answers so don’t give up, please, hang in there. They say there has to be a storm before the rainbow appears.
Searching for a diagnosis and treatment
I have all the symptoms of #PosturalOrthostaticTachycardiaSyndrome including the pulse rate spikes when I change position and frequent near-syncope. I just had a tilt table test and the doctor and cardiologist both said it’s not PoTS because my blood pressure is going down instead of staying the same. Now they are saying they might not be able to diagnose me with anything, I will just need to monitor and avoid my symptom triggers. This is what I have been doing for years and it is not good enough! I am so limited in my activities and work. I am feeling so discouraged. Any advice or helpful information out there? #Undiagnosed #MedicalZebra #AutonomicDysfunction #LivingWithPOTS
I was diagnosed with POTS after struggling for years of getting a diagnosis. In the past year, I have noticed my symptoms have been getting much worse and more intense. I haven’t completely passed out before but I do struggle with pre-syncope. For those of you who do completely pass out, have you always passes out since being affected with this or is this something that can progress and you might eventually pass out? I’m new to the diagnosis (not the symptoms), so just trying to gain a better understanding as my doctors don’t fully understand POTS so I’m trying to figure this out on my own. Any thoughts or suggestions or personal experience is greatly appreciated!
Chronic Fainting since 14 awaiting diagnosis
Hello I am Bailee Ray 19. I am a twin . I’ve been passing out quite frequently since the age of 14. My twin does not have any symptoms related to what’s going on with me. In 2015 I started fainting when I was 14. This continued until I had to use a wheelchair everywhere and I would faint everyday. I was originally diagnosed with Neuro cardiogentic syncope. Around the year 2020-2021 I had a period with no fainting almost went a year and a half with no symptoms , I started increasing my exercise and fixed my diet which seemed to be the solution to my dysautonomia . However recently July 13th I passed out for the first time in a year and a half. I was on vacation in a hot state, so I figured that’s what caused it. My fainting is back , I can’t stand for more than 10 minutes , bond to a wheelchair, fast heart rate when doing the simplest of things such as standing or going to the bathroom. I had to defer my second year of college while my twin attends university because my fainting has become so frequent. My new neurologist doctor suspects I either have a Neuromuscular disorder- meaning at 14 I was misdiagnosed. I had a video visit with Cleveland clinic doctors they too believe it was misdiagnosed are leaning towards POTS. I was on medications such as midrodrine, Propranolol, any many of the medications used to treat dysautonomia. I truly don’t know if I have Pots/dysautonomia , some other illness, or secondary pots thats being caused my something else. A couple of my lab results came back abnormal such as low absolute neutrophils, 126.96.36.199 RNP antibodies, postive speckled ANA. I’m going to Cleveland Clinic in November to rule out if I have dysautonomia because I don’t show any signs other then increase heart rate and low blood pressure. I’m having a QSART test , tilt table, and skin biopsy hopefully that will give me an answer. I’m trying to be patient but it’s hard because as of right now my quality of life is being effected seeing as I can barely stand for 10 minutes and I’m constantly lightheaded with fatigue/brain fog. I’ve had at least 10 doctors visits in the past 2 months. I went to being completely normal on my way to college two months ago to being practical house bond now. My hands and feet are constantly freezing and cold also. I am currently doing the Levine program 20 minutes on my bike 3-4 times a week which leaves me very fatigue after. Some weeks I can barely go on my recumbent bike for 10 minutes. currently can’t walk at all right now. Physically I can but it makes the fainting spells and symptoms worse or I become overly exhausted within walking a short distance. I’m using a wheelchair to get to and from places.I’ve done this in the past due to chronic injuries I’ve had because of the fainting. Two concussions and a broken collar bone. If I stand and/or walk for less than 10-15 minutes on a good day which isn’t often. Last time I stood for 8 minutes and fainted badly injuring my neck and shoulder. I instantly get lightheaded and pre