NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. › Reply To: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts.
Hi Terri,
Trouble is your doctor needs to know about your sons episode, it’s pretty bad when it affects your breathing. I fully understand your reluctance to go to see him though, I have that same problem about doctors! I have taken to writing summary letters now, which I either post in advance of my appointment, or take with me, that way they have all the information I need them to know (and it’s in my records, so they can’t say I never told them!) so it’s up to them to act upon it. There is so much to impart and so little opportunity to do it, so that was my solution. I think you wrote the episode very eloquently in your post and no-one would have difficulty in understanding it.
I’ve had similar to your sons episode, albeit nothing like as severe and I think it probable that the heat worked. My limbs have gone into ‘cramp-like’ spasm episodes when my peripheral circulation turns right down (in order to maintain blood supply to my main organs) in fact, if I raise my leg above the height of my bum I can often induce one. I have also experienced similar in my trunk, certainly under my ribs and across my abdomen at times but only fleeting, it’s a bit like a ‘labour contraction’ but only over a small area. I get fasciculations too but they are less taught and intense.
I’m glad the poor little soul’s ok now. It’s bad enough having this as an adult, I dread to think how a poor little child deals with it.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.