Pernicious Anemia

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IGIV: Finding Hope in The Infusion Center

IGIV is a plasma product used to treat various immune system disorders, and in my case, MS is the target. It is made from a pool of antibodies extracted from the plasma of thousands of healthy donors. Once a mouth, I go to the infusion center where I sit for 3-5 hours in a recliner with a good book while my infusion nurse makes sure he loads me up with healthy stuff such as plasma, vitamins, fluids, etc. My hope is the magic cocktail will help me to live somewhat of a normal life. The truth is, I have never been “normal,” but I am determined. I will never give up trying to make my plight more fortunate.
Mike, the infusion nurse, has become my friend. Often he schedules me on light days and we talk about politics, religion, and healthy living. Today was a little different. I suppose most people don’t want an infusion the first day after New Years. But Christmas 2025 did a number on me and I have been exhausted for days. I am severely anemic and I couldn’t wait for the jet fuel running from a bag on a pole into my veins. I am hopeful I will start feeling better now.
Mike tells me IGIV is becoming more advanced and will be more efficient in the future, helping my nutrient deficient body absorb vitamins I need to fight pernicious anemia. There is hope.
IGIV patients are the most kind, positive people I have ever met. Everyone is so friendly and happy to chat the time away. I prefer to meet new people than to read a novel in a day. Let’s face it, people like me don’t get out much and we welcome the opportunity to meet a new friend. Mike joins in as he rushes around making sure his patients are getting every thing they need. The room feels like a spa, with Mike bringing blankets, adjusting recliners and serving snacks. He is the best.
Why are people with immune deficiencies so sweet? I can’t remember a time when I have had to tolerate a rude infusee. It’s apparent most of my MS peers make the best of their situation and live their best life.
While I am not always Miss Sunshine, I look forward to hanging out with people who get what everyone is going through. It’s encouraging to be in an environment where the medical staff truly care and will do anything they can to make the patients smile. It’s great to talk to people who just want a fighting chance in life. We want the same thing and hanging out with people who know how difficult the fight can be gives me hope. Hope is contagious. Keep spreading hope and it will circle around and come back to you three times.
MS is not a death sentence. It’s an opportunity to help others be a positive force in the world and finding a way to touch another life is a lovely thing. Grace & Peace

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I'm new here!

Hi, my name is B12Warrior. I'm here because I want to share my story to educate and empower others to take control of their health.

#MightyTogether #PerniciousAnemia

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Looking for answers/support

So I've been dealing with #Dysautonomia #HashimotosThyroiditis #PerniciousAnemia #Spoonie and im young, I just got in my first relationship, and I'm so lucky my partner is understanding and supportive, but I'm realizing how much of a struggle this might be. Any time something gets me super excited/nervous, my heart rate shoots up and I have to struggle not to go limp and pass out. I'm careful to drink water and have food and salt before I have any large emotional moments, so that's all I know to do. Are there any experienced couples out there with tips to manage this? Thank you all so much!

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Joining!

I'm here because everything is adding up so rapidly with both medical and social, and what better community to relate with then the ones going through exactly what I am?

#ADHD #EhlersDanlosSociety #POTS #HashimotosThyroiditis #HypermobilitySyndrome #PerniciousAnemia #ChronicPain

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New to Stiffperson and not sure what to do

Hi - I lost my thyroid functionality due to toxic chemical exposure while serving in the Army. I don't regret my time in the military at all, but it is what it is.

It seems the thyroid was a doorway, and without it being shut anymore, many unwelcome visitors came in and set up their new home. Besides the thyroiditis, I now have pernicious anemia, Raynaud's syndrome, scleroderma, and the newest and most nefarious invader, Stiffperson Syndrome. I never would have tested for it without Céline Dion's announcement, and I am grateful for her courage every day.

Stiffperson, however, has made it very difficult to hold down a steady job. It has made the cold winters here painful to my muscles. It has changed my idea of my future and my plans. I took my health seriously and used to feel I could do anything. Now I feel limited and that has taken a difficult mental toll on me.

I live in the northern part of the state of Utah, in the US. I appreciate the advice here and am looking forward to learning from the experience from people here. I want to thank you in advance for your help and your insights.#StiffPersonSyndrome #PerniciousAnemia #Scleroderma #RaynaudsPhenomenon #thyroiditis

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Hello, I’m Jacqui, a newbie

Hello everyone, I’m Jacqui.

I am 30 years type 1 diabetic.
I was diagnosed with hypothyroidism about 2 years ago (levothyroxine)
10-12 or more years of fibromyalgia
and now my gp thinks I have pernicious anemia for which we are waiting on blood test results.

The fibro is very limiting but it’s the PA that’s brought me here. I’m struggling with symptoms and, at the moment, I seem to be getting worse by the day. I had blood taken several months back and while we waited for results I was put on a low dose iron and cyanocobalamin tablets and I perked up something lovely! I was meant to go and get bloods done again after finishing them but I had a fibro flare up and didn’t get them done. I guess I’m starting again from scratch now?

Right now I’m exhausted, dangerously unsteady on my feet (needing to use my walking stick inside the house), I’m shaky, my bums upset, having huge waves of threatening nausea, I’ve some stomach pain from time to time, appetite is almost zero (not helpful if you’re diabetic), struggling to hold my phone up right now and I just want it all to go away.

Is this normal? I know things will improve once I’m getting treatment but in the meantime I’ve got grumpy housemates (husband and adult daughter) and a home going to rack and ruin. I NEED to be well.

Any suggestions and/or experience shared would be hugely welcome!

Jacqui - Cambs, UK

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I’m always listening with an open heart!♥️

Advice?!! I’m now 55 and have been in therapy since 16. I’ve heard it all (voices included for free) and have run the gammet on psych meds and have done my due diligence with tons of research until bleary-eyed and on every corner of the continent. Eastern, Western, alternative and wholistic medicine.
As if having mental health disorders wasn’t enough. The universe saw fit to include multiple autoimmune disorders to my curriculum vitae. Took a few years and several doctors later to receive diagnoses.
Had to take a leave of absence from my job that I was very passionate about. But, it’s true, either find time to take care of yourself or your body will do it for you. I haven’t been back to work full time since 2012.
I’ve suspected Autism as both of my amazingly brilliant children are on the spectrum with ADHD and microcephaly. To add insult to injury, I have been full time caregiver for mom who has Alzheimer’s for the last two years. And, I’m scheduled for two upcoming surgeries to remove the final of 10 malenoma removal surgeries.
It’s mind numbing after years of treatment to still feel unwell. Wish there was truly a magic cure-all for everyone of us!!! I like to infuse humor and creativity into my day to stave off the pain and exhaustion.

#MentalHealth #Schizophrenia #BipolarDisorder #Anxiety #Depression #ChronicFatigue #ThyroidDisease #MultipleAutoimmuneSyndrome #PerniciousAnemia #Arthritis #ChronicObstructivePulmonaryDisease #AutismSpectrumDisorder #ADHD #newbietoTheMighty #BackPain #Cancer #SkinCancer #ChronicPain

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