autoimmune autonomic neuropathy

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autoimmune autonomic neuropathy
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Didn’t even realize…

Didn’t even realize … I couldn’t do it anymore without severe consequences.

Needless to say I am still struggling to find that balance for myself and what I can handle, be ehh after vs pushing myself farther than I should have because my brain doesn’t understand my body just can’t. Now am severely am / going to be paying the issues over the next week+.

Went on my first really long car ride OH to SC and back over a span of 4 days. To pick up my daughter from Bootcamp Graduation and Celebrate her becoming a Marine.

I didn’t have to drive to much which I have kinda figured out I really start having issues after driving an hour and am absolutely drained to nothing after. Every little movement in this car ride just sends shooting pain down my nerves.

So needless to say I have been gritting my teeth sense Wednesday. So I can actually have a smile on my face and show how proud I am of her and to celebrate with my family.

So yep…. It’s been a long never ending day the last 4 days and have not slept. On the positive I will be home in 30 minutes and hopefully relax my body.

#MixedConnectiveTissueDiseaseMCTD #Anxiety #Depression #RaynaudsDisease #RaynaudsPhenomenon #ChronicMigraines #Nervedamage #AutoimmuneAutonomicNeuropathy


Am I the only one who gets body aches/rheumatic fever no matter the sickness infected with?

My whole life I’ve always gotten terrible body aches and rheumatic fever when I come down sick with anything from strep throat to a head cold.

I thought every one else did too.

Now I’m learning that it’s quite uncommon in my peers.

I assume it’s because I have an autoimmune neuropathy.

Does anyone else with autoimmune neuropathy get this?

What about if you don’t have autoimmune disease, do you experience this?

#AutoimmuneDisease #AutoimmuneAutonomicNeuropathy


A little predictability would be nice. #Gastroparesis

It is so bizarre to me that I can eat [insert random food here] one day, and be totally fine. But I eat *the exact same thing* another day, and I’m incapacitated by intense nausea and abdominal pain. I wish I could throw up everything in my stomach right now, but that’s super triggering to me as someone who had an eating disorder when I was a teenager.

I just want to have a normal, healthy relationship with food, but I can’t because I never know what’s going to make me sick. It changes day to day. So that leads to a fear of food at times. I’m better than I was at the beginning of this illness (among my other autoimmune diseases like #AutoimmuneAutonomicNeuropathy and #AutoimmuneAutonomicGanglionopathy ).

Thing is, I feel like doctors don’t take me as seriously because I’m not dropping tons of weight like I did in the beginning. I’ve gotten to what they consider a low-normal weight for my height and it’s like they just think I’m now fine or “good enough” based on that alone. Meanwhile I’m in miserable pain and discomfort every single day.

I’m desperate for relief and just needed to vent. Thanks to whoever listens. #ChronicIllness

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Twice in the last month, I lost the ability to walk for an entire day because my whole body would start shaking so hard that I couldn’t maintain balance, even with a walker. One time it was after a short amount of exercise which I hadn’t done in a long time and I almost fainted when I stood up and then I lost function. The second time, I had a hemiplegic migraine and took medication for it that I’ve used for a few years and never had any issues with and I had the same shaking standing and attempting to walk was a problem. I regained a little bit of function by bedtime but not much. The next morning, I was ok again. Is this a symptom of POTS? I have been diagnosed with it. Has anyone had this type of experience? #POTS #AutoimmuneAutonomicGanglionopathy #AutoimmuneAutonomicNeuropathy #MyastheniaGravis #ChronicIllness #Dysautonomia #AutonomicDysfunction


Learning to accept my SFPN this disability pride month

I’m a long time follower of The Mighty, new(ish) contributor. I’ve been challenging myself to start feeling comfortable speaking publicly about the stigma and isolation of SFPN, and wanted to share one of my first advocacy articles. Would love any feedback others may have
#AutoimmuneAutonomicNeuropathy #sfpn #ChronicPain #HealthEquity


Can’t ACCESS treatment!

The only available treatment for my 16 year long battle with a secondary autoimmune neuropathy is unfortunately inaccessible to me due to:

- insurance not willing add it to its coverage guidelines yet

- out of pocket cost being $9.7k/infusion.

According to my doctor, I need these infusions for at least 12 months to start.

This is what medical exclusivity looks like.

I live every day with neuropathy burning me from the inside out, which is quite literally hell and I cannot access treatment.

#AutoimmuneAutonomicNeuropathy #SmallFiberNeuropathy #autoimmune #treatment #Disability #Accessibility #access


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 I just needed to excersize more despite my intolerance to it due to POTS, frequent falls and constant dizziness with syncope. My heart rate jumps 100 points on almost a daily basis.

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.

#AutoimmuneAutonomicNeuropathy #SmallFiberNeuropathy #autoimmune #Advocacy #AutonomicDysfunction #Heartblock #EhlersDanlosSyndrome


How to deal with variability

I'm finding one of the most challenging things with my many diagnoses is how variable it is from day-to-day, or even hour to hour. If I only had bad days, I think it'd be easier for me to cope with what I am and I'm not able to do. But, since some days are better than others, it's hard for me to adjust my expectations. It's also hard for me to not push myself beyond my limits on my good days, I want to do a better job of respecting the good days instead of trying to do all the things and then regretting it for the next two weeks.

How do you deal with variability in your condition?
#EhlersDanlosSyndrome #AutoimmuneAutonomicNeuropathy #Dysautonomia #Disability


Struggling tonight

Having one of “those” nights... My sister, niece and I are taking a little mini vacation tomorrow - Sunday (No worries, we aren’t going anywhere around crowds or to any “hotbed” states” but we still have our masks & loads of sanitizer packed) so I have had an abnormally extra busy past few days trying to prepare. My body is so sore and hates me right now. I was hoping for a good night’s rest, but due to being so uncomfortable I took a dose of pain meds which makes me insanely itchy despite pre-medicating with Benadryl, Zyrtec, Pepcid, Tylenol, & Phenergan. I was able to fall asleep for about 3 hours but woke myself up scratching, now I can’t sleep. I’m also anxious about the trip for several reasons but mainly right now because we typically fly when we travel because it’s faster and easier on me all around. However, this trip we are driving and it’s about a 5 hour trip without stopping. I am so scared it is going to put my body in turmoil to be in the van that long. We are planning to make frequent stops, I have extra pillows, blankets, hot/cold packs, compression socks, literally everything I can think of to keep comfortable but I can’t help but be nervous. It’s been years since I have traveled more than 1 to 2 hours anywhere. I just want to be able to enjoy myself once we get there.
#AutonomicNeuropathy #AutonomicDysfunction #Gastroparesis #MultipleSclerosis #TPN #Portacath #PowerPort #ivfluids #SmallFiberNeuropathy #AutoimmuneAutonomicNeuropathy #OrthostaticHypotension #PosturalOrthostaticTachycardiaSyndrome #Malabsorption