NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR › Reply To: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR
Hi, I’ve had some similar experiences.
My echo said that I was nearly dead and several doctors told me not to be scared when they implant a pacemaker. Many heart problems.
My thoracic MRI, where I was so terrified that I’m lucky that my heart didn’t burst – brought my EF up and the echo was now ‘old news’.
My holter monitor showed, arrythmia, brachycardia, and tachycardia which they didn’t seem concerned about. I was thinking that they don’t realize that a few steps to the bathroom can send my heart into a frenzy. Maybe they thought I was exercising to create the tachycardia. I just dropped the subject. I don’t have the energy to advocate for myself with someone who is ‘blind’.
I was told that the echo didn’t take into account my chest deformity due to the EDS. That’s why the results varied. I was also told that my heart is now stable.
My genetic doctor said that it was fine if my heart was stable but I have cardiomyopathy as well as other heart problems. He said that I should know why my heart is damaged, what the cause is, or something-or-other about my heart is not a non-issue. He felt my heart was, indeed, an issue.
Who am I gonna tell this to????
According to me, I have dysautonomia. I am not 100% positive of POTS because I am not positive of the consistency of my heart rate. Yes, it goes up 30bpm when I stand BUT I’m not positive that it does exactly this every single time. It goes crazy for no reason. I feel wave of cold over me and it drops significantly. I can sit still and it changes up on me. My body doesn’t seem stable enough to me for me to be sure of POTS. I burn. I sweat. I freeze. ALL RANDOMLY AND WITHOUT ANY PROVOCATION WHATSOEVER. Vomit. Nausea. Diarrhea. My body is just haywire! It’s all over the place. Now, let me try telling a doctor that I have dysautonomia. Yeah, right.
I do want to say this: Blair Grubb and his PA, Beverly Karabin are familiar with dysautonomia. They are out of Toledo, OH. I haven’t been as of yet but I’m sure it would be worth it.
I think he might be POTS expert also. I’m sure that going to him would be better than spending years ‘chasing your tail’ and being abused by multiple doctors. RIP THE BAND-AID OFF! LOL! We can get it right the first time, God willing. I think it would be a lot better for our health and quality of life.
Here’s a thought: what if the echo and thoracic MRI results were so diff because my heart and my body are insanely out of sync?! Hmmm! Hmmm! The variance is off the charts, really. I’ll bet if I had an echo every day, it would be quite diff – or maybe once per week. My days seem to go in ‘clusters’ ie: headache for 5 days, pants crapping for 4 days, can’t stay awake past 7pm for a handful of days, too exhausted to barely move for 3 days, blah blah, yadda yadda – just the tip of the iceberg. Might get a few relatively consistent days of a certain suffering, who knows? Then the next ‘wave’ comes in stronger and shifts focus onto it. Lucky me, huh?
Sorry for what you’re going through. I’d say an expert who would actually help would be the best course of action.