Misdiagnosed: A Story of Resilience Through POTS
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- čas přidán 13. 08. 2023
- Misdiagnosed: A Story of Resilience Through POTS is an inspiring and heartfelt documentary chronicling a 22-year journey with Postural Orthostatic Tachycardia Syndrome (POTS). With 18 years of misdiagnosis and countless doctor appointments, the path was fraught with confusion, frustration, and despair. From the depths of being bedbound to the triumphant summit of remission and freedom, this film offers a raw and honest look into the long and arduous road to overcoming POTS.
For nearly two decades, it was a battle of misdiagnosis, knowing something was wrong even when told she was fine by doctors. Confusion and disbelief became a daily struggle. The experience of being dismissed and doubted by medical professionals left a sense of isolation and despair. Even within the closest relationships, doubt crept in. This documentary explores how a spouse's internal struggle, torn between trusting his wife's experience and the conflicting messages from medical professionals.
But love, trust, and determination prevailed. Together, they embarked on the long road to answers, fighting for a diagnosis and uncovering the truth about POTS. Their journey is a testament to the power of partnership, empathy, and unbreakable resolve.
Join us as we delve into the emotional rollercoaster of diagnosis, the challenges of daily life with POTS, and the unwavering determination to overcome. Witness the power of love, support, and resilience that propels the journey from brokenness to bravery.
Featuring intimate interviews, personal reflections, and expert insights, "Misdiagnosed" is more than a medical story; it's an odyssey of hope, courage, and transformation. Whether you are living with POTS, know someone who is, or simply want to be inspired by a story of human strength, this documentary is a must-watch.
Learn about the medical complexities, the impact on relationships, and the innovative approaches that led to remission. Discover how an unbreakable spirit can turn obstacles into opportunities and despair into determination.
Misdiagnosed: A Story of Resilience Through POTS is a testament to the human spirit's ability to rise above challenges and find joy, purpose, and healing. Join us on this incredible journey and be inspired to reach your own summit.
Literally my worst nightmare. I went through the same thing on a smaller scale. Now I don't even want to go to the doctor unless I think it's something obvious.
I have late stage multiple sclerosis.I am sick all the time.I got divorced. Life is hard. Ive been in assisted living for 2years. I hope many, many people hear your story. It is MOST IMPORTANT TO find a new life’s purpose to keep in your/my mind. Your story is much like my own. so much like my own. I try to show grace to myself and my family and friends. I just read a great book I’ll recommend, “Ikigai”, the Secret to a Happy Life” finding your purpose. ❤🎉Enjoy.
This is very close to my life story. I was born with EDS/MCAS and developed POTS in my 20s. Misdiagnosed until 4 years ago, after 50. Early arthritis as well. I have Hyperadrenergic POTS, and it's barely under control at the moment. I also beat long covid the first time, as well as Addison's and Hypothyroidism. I had covid again this xmas, and I haven't recovered at all, but I know how to get there. I do know the joy and passion and purpose you are talking about. Fly fishing/tying is my thing. My entire spine is in bad shape. Unfortunately I had to stop going to the gym because of undiagnosed POTS. I do water exercises and am mostly in remission from severe arthritis as well. Nutrition is vital. I don't absorb or metabolize anything properly. Plant based including pain/anxiety meds, lots and lots of vitamins, minerals and antioxidants and just keep moving. I'm allergic to pretty much everything but fresh air, so camping is my therapy.
Thanks so much for this video. I'm going to share it with my family. They have been through hell as well, and I really thank you for the husband's perspective. I'm sure mine will, too. And my children are just as traumatized as I am from the insane years and years of me being misdiagnosed, going totally crazy at one point, almost dying many times, and 30 years of almost daily anaphylaxis migraines. And they are all hypermobile and don't want to even get checked out they are so scared.
Good news is, I'm also in remission from bipolar disorder and depression. And at 55, I recently found out I have Autism.
Both my sons have high functioning Autism, one with Aspergers like me.
The allergy and nutritional deficiencies these diseases cause are what they think now is causing Autism.
POTS and MCAS are on a rapid rise since Covid. That's why people are dropping dead like athletes and doctors. I know at least 5 people including my husband who developed POTS after Covid or vaccination.
Thank you again. Take care.
Hi Deb, firstly I’m sorry for all you’ve had to endure- your ongoing courage is formidable. The reason I’m commenting is a new gene mutation was IDd, which you may wish to test for.
Obviously, there is a huge overlap of a constellation of disorders & symptoms in this ‘group’. Repeatedly we see anecdotally, clinically, & in research that there is essentially a Venn diagram overlapping with EDS, POTS, MCAS/MCAD, Autism, ADHD, OCD, paresis ( gut, bowel, and/or bladder), chronic pain, ‘chronic fatigue’, etc.
It’s long been known that there is a gene/mutation somewhere which is responsible for this constellation of disorders & symptoms, although we’re yet to find it. I have no doubt that in the next 20 years, we will.
What is difficult is that patients spend years or decades suffering, given multiple diagnoses (if they can even get diagnosis beyond ‘psychosomatic’) , & it’s all treated separate from one another.
This is because the symptoms & diseases don’t all appear at once, but rather they unfold over the course of a persons lifetime. New symptoms, new problems, new tests, new treatments, new diagnosis, new specialty. Rinse & repeat.
It does such a disservice to treat patients as though these are all separate entities.
In my personal view, patients suffering with this group of disorders can only benefit from each ‘diagnosis/new illness’ being viewed as a different branch on the same tree. IMO, each separate diagnosis/illness is really more a different ‘symptom’/expression under the one overarching umbrella (let’s just call it the question mark gene lol).
Anyway, all of this is to say that a few years ago, a mutation in the gene TPSAB1 was identified as causing an over production of alpha Tryptase, resulting in an elevated baseline Tryptase level.
This mutation has now formally been clinically defined as Hereditary alpha Tryptasemia, an autosomal dominant genetic trait
In the western/caucasion population, it’s estimated that 5% of the population has extra copies on the TPSAB1 gene, ergo they have HaT.
Certainly, this tracks with the population frequency of those suffering with this constellation. of disorders (EDS/POTS/MCAS/Autism etc).
Up to two thirds of those with HaT are asymptomatic.
However, in those who are not asymptomatic, there is an evolving clinical picture. Due to the frequency of the mutation, understanding the correlating clinical picture is complicated.
The earliest studies expressly documented the association of symptomatic HaT patients. Also frequently suffering from joint hypermobility, chronic pain & fatigue, ‘POTS’, autism, adhd, neuropsychiatric disorders etc.
Later studies did not have the same findings.
However, the most recent studies are showing that there does in fact appear to be a subset of patients with HaT who do suffer from this same constellation of different disorders.
This is only anecdotal, but in my experience, there is absolutely a link. The genetic immunologists I’ve spoken to strongly feel that this is a disorder which, amongst symptomatic patients, frequently reveals a group of patients who have been previously diagnosed with MCAS/EDS/POTS etc.
It’s very easy to test for. First, you need a baseline Tryptase test (although given your diagnosis of MCAS it’s safe to assume you’ve had repeated Tryptase testing). If it’s elevated, that is indication to proceed for testing for HaT.
There’s a lot of info for patients online. For my own family, this has solved a puzzle which has unfolded over several generations of our family (and will continue to do so).
There’s no real treatment, although there are therapies to explore for patients e.g suffering chronic severe anaphylaxis.
Sorry for the essay, I just thought on the off chance it may help, then it’s worth it.
Keep fighting the good fight ❤
That hiking part was amazing ❤
I got POTS after long haul cvd. Im always dizzy, going up and downstairs are frightening. Ive fallen down 7 flights of stairs already.
I had a stroke in my sleep a week after watching my husband die from undiagnosed cancer. He died in 1 week. I think that paved the way too. It was the bottom layer and cvd and long haul was the frosting on the cake. The vaccines sealed it in. But i still think POTS is still another thing BEHIND the thing. Like the subject here, i wait to see doctors.
Did you ever suffer from vertigo/dizziness? What are your struggles now?
Great video! I am so thrilled to have the program. I relate so much❤️ Thank you!
Thank you so much for saying that! Happy you are enjoying it ❤
I have POTS. I started out relating to this and wanting to show everyone and then I stopped abruptly. I’m sorry, but, this isn’t an accurate portrayal of POTS healing at all. It just shows you working out and then suddenly doing 5Ks and climbing mountains. Nooo. That’s not how it happens. POTS patients have significant post exertional malaise. If we over exert, even a little bit, we are thrown into a flare and often, rushed to the E.R. I have been hospitalized over 35 times. I wouldn’t recommend this for that reason. It’s just not how it happens. It took me five years of constant, careful, measured workouts and tons of setbacks before I even was strong enough to travel.
Nov 5, 29018 I was misdiagnosed. Never had pneumonia or asthma. Dr told me I did and fave me chem antibiotic with a steroid.
I almost died lost my job, income , friends and family never understood. No responsibility from Dr’s, six years of intense pain hard walking if can . Only wanted to give me anxiety drugs. I was what is called now “Floxied” poisoned from the drugs. No help from Drs been to more then seven
This is so inspiring and also gives hope to those who have this disease or whose loved ones have the disease. I had received my diagnosis of Parkinson’s when my niece found out she had POTS, I wish I had known what I know now and would have reached out to her and my brother and his wife (her parents) if just to have encouraged them as they navigated the difficult road to managing the disease. It is usually fear from lack of knowledge that keeps us from reaching out to people. I know that by having Parkinson’s now and experiencing it from friends and family. Thank you for sharing some private and very emotional truths to get this information out to those who desperately need it. God bless you.
Thank you so much for your kind words! That is so true. So happy you saw this and I am sure they are thankful for your support in all this now!
❤
Love this! Thank you so much for all your videos and help. I'm 6 months into my worst flare and already putting it into remission.
You are so welcome!! That is AMAZING! Keep up with that effort!
I watched and listened with enthere's a has, Em, but you never gave any helpful.What to do for pots very disappointed😊
. My comment was done verbally on Bluetooth while driving.There aren'typos you never gave any helpful ideas.What to do for pots?This is very disappointing.It's like listening to an information for an hour with no punch line
Wait so this whole thing is just an advertisement? I mean, good for you I guess. Thanks for nothing.
This brings me a lot of hope, ty