Ep. 1 - EARLY SIGNS & MISDIAGNOSIS of Lewy Body Dementia

Comments · 58

• JI

  @jimprior5700 · 1 year ago

  Too bad most people and especially Doctors aren't seeing this video..

  6

• JE

  @jennifersantibanez4931 · 8 months ago

  This video is so helpful! Thank you to everyone who shared their story gives a lot of hope to many who are helping their loved ones. I am one of them.

  4

• JI

  @jimprior5700 · 1 year ago

  Why are so many MD's inept at spotting the possible signs of Lewy bodies?

  20

• ST

  @StephanieGreyBeHealthy · 1 year ago

  Early diagnosis so important, for early treatment. Better quality of life!

  7

• LE

  @lewybodyresourcecenter · 3 years ago

  Ann's beautiful mother Betsy passed away peacefully on January 1, 2023.

  15

• OP

  @OphidiaSnake · 1 year ago

  I thank you so much for these videos. I had long felt that my mother's undiagnosed condition resembled Dementia with Lewy Bodies but we are still waiting for a diagnosis (she is undiagnosed because her condition prevents her getting to a psychiatrist's appointment to be diagnosed- classic catch 22). However, your video blew me away because her first mental symptoms coincided with her developing a runny nose! Although it does not alter her condition, having some idea of what is happening is still oddly soothing.

  7

• YF

  @yfa6244 · 3 years ago

  So many neurologists and health care providers were clueless with my mom.  Even when mom checked ALL the boxes for Lewy Bodies the neurologist said it was Mad Cow disease! Ugh! She passed a few days before she finally could have gone to one of the best neuruologsists that specialized in LBD. The ignorance just left us daughters feeling alone. We know what she had. It should be mandatory for physical therapists also to be educated so they don't just drop the client on a "bad" day. Mom surprised her physical therapists more than once as I begged them to come back in a day or two. It is so very unpredictable, the one things that Alzheimers generally is not!

  33

• BO

  @Boogeeman1234 · 2 months ago

  I kind of had what I know now to be a classic progression: RBD at age 35, sudden constipation at age 50, forgetfulness at age 51, then went to neurologist, immediately recognized symptoms as possible DLB. Sent to movement disorder specialist, diagnosed with MCI thought secondary to chronic sleep deprivation. DAT, MRI, PET all normal. Cognitive test not normal but attributed to the sleep issue. Fast fwd 2 years, got a biopsy for alpha synuclein and was positive in all 3 samples. Since then, hallucinations, tremor and severe axial rigidity-had trouble moving. On multiple medications now, symptoms better, 1 day at a time. I would say my symptoms were recognized but could not be definitively linked to a neuro disease until the biopsy.

  1

• TH

  @theonion3667 · 1 year ago

  46 years old, very mild symptoms. 2 neurologists told me not to have a datscan. Too young for parkinsons, no physical signs at all. <br><br>I wanted to eliminate the risk from my mind I have been struggling with executive function etc. So many people would say I am just getting old and that they had the same issues. I knew it was wrong though and my memory has been lost for years. Missing swallow tail sign on an MRI was the first indicator. <br><br>So here we are, I&apos;m luckier than most I have an early diagnosis. I will be my own not so clinical trial and battle this as long as I can. For my family, for my friends. <br><br>I am at peace, I have had the most amazing life. I&apos;m going to learn some lessons to pass on to future LBD patients. It&apos;s biohacking time. <br><br>I at least used to be fairly intelligent and I intend to work with AI and come up with neuroprotective solutions that work for me. <br><br>I&apos;m thinking of sharing my journey and testing my fluctuating mental and physical abilities with a wii fit for fun. <br><br>Getting a 4th opinion from a doctor in Singapore on Wednesday. I don&apos;t expect a change in diagnosis but many around me are in denial.

  20

• FA

  @FaithAloneUK · 3 years ago

  This is really helpful. Thank you. <br>So hard to get diagnosed or even any interest to help us. Just seem to be written off. I realise it can’t be cured but as a care giver to my adult son, it would help enormously to know what’s going on.

  18

• ML

  @ML-yn1zz · 9 months ago (edited)

  I am glad their videos exist. When I was trying to figure out what was happening to my mom; you had to read a lot. Internet was in its infancy. I found a great neurologist and told him what I had been reading and what I thought she had. He was shocked I had found it by reading and agreed; she had Dementia with Lewy Body. He was a very positive person and told my mom that he would help her. This was so important for her to have hope. The medication he prescribed had to be taken in increments until the necessary dose was reached. It worked!! She improved, it was amazing. Unfortunately, within a few days, the side effects kicked in and she was not able to tolerate it. The doctor reassured us, we will start over with a much smaller dose and stretch out the build up to two months. Once again, the meds kicked in and she improved, dramatically. But as we feared, the side effects came back and it was the end of wonderful few days my mom experienced. &nbsp;I am grateful to the physician, but mom is gone now.

  3

• SU

  @susanmcmichael5607 · 2 years ago

  I’m going through all of this right now. Within the last 8 months I have been tested with multiple MRI, MRA, PET scan, EEG, and the 4 hour neurological test. First I was told I had mild Alzheimer Dementia . Now the Neuropsychologist said he thinks it’s Lewy Body Dementia. <br>To me, dementia is dementia…

  11