RichGotsPots Posted March 30, 2012 Report Share Posted March 30, 2012 There are the three illnesses I'm targeting next on my hunt for the cause of my breathing problems. Does anyone have any experience with them and do you know what doctors would diagnose these?Thank you,Rich Quote Link to comment Share on other sites More sharing options...
arizona girl Posted March 31, 2012 Report Share Posted March 31, 2012 Hi Rich,One type of doctor that can diagnosis these is a Neurologist who specializes in autoimmune neuromuscular disease. They are a subspecialty and there are not a lot of them. This type of neuro treats patients that have ms, als, derma and polymostis, polyneuropathies.My neuro is one of them, they specializes in muscle and skin biopsy. They are in phoenix arizona. Perhaps if you call them they may know a neuromuscular doctor closer to your home. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 1, 2012 Author Report Share Posted April 1, 2012 I made an appointment with a neuro that specializes with ALS and some neuro muscle things. They wanted me to fax some info and just told them my last doc thinks I had neuro muscle so they finally gave me an appointment... I hope he doesn't tell me he only handle ALS when I see him.. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 2, 2012 Report Share Posted April 2, 2012 Many people on these forums have a habit of finding the most obscure etiological mechanisms - which usually they have never been diagnosed with or which has even been considered by a doctor - be it these illnesses, theoretical illnesses or some such...Tachycardia alone can cause breathing problems, abnormal Co2 handling and chemoreceptor sensitivity appear tied to hypernea in POTS. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 3, 2012 Author Report Share Posted April 3, 2012 Many people on these forums have a habit of finding the most obscure etiological mechanisms - which usually they have never been diagnosed with or which has even been considered by a doctor - be it these illnesses, theoretical illnesses or some such...Tachycardia alone can cause breathing problems, abnormal Co2 handling and chemoreceptor sensitivity appear tied to hypernea in POTS.I agree these are obscure, but most would agree that so is POTS lol. I just had an exercise test and gave to Pulm Dr. the study by Dr. Stewart and the exercise study showed no decrease in CO2, so I crossed that off my list. But to be honest neither Dr. Stewart or My Pulm measure CO2 in the best clinical way. They both measured exhaled CO2 levels (end tidal) but the most accurate way, if you ask any clinician, is to get a blood/gas measurement in an arterial blood draw.Regarding Tachycardia and breathing issues, I am constantly measuring my HR and my breathing problems are not triggered by a high rate nor are they rescued by a low HR.My Pulm Dr. said that most of the breathing chemo receptors are in the throat and there isn't any evidence it's causing my issues.Lastly, I wish we had some data on the % of people that had other primary conditions like Cancer and Diabetes that cause POTS. Some POTS people have Mito issues that they found out with a muscle biopsy, Is POTS secondary to that or co-existent? The extent to my breathing problem are so severe that I can't live without answers and if I have to do all the work and get doctors to rule it out so be it, I have no choice. Rama, just imagine you had all your symptoms but on top of them you couldn't breath and you had no rescue medication to help you. Roughly 4,000+ people die every year America from asthma and asthma people have many medications, I don't.. But would I do have is my ability to keep doing tests to get at the nature of this scary symptom. I'm not ruling out POTS as the main cause but I've never read or heard about metabolic abnormalities in POTS. Maybe it is normal, maybe it's normal for CFS, if that's the case it should say it somewhere..... I've also not read in any medical POTS literature how an POTS treatment has helped with breathing problems. I will do a poll on that soon.. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 4, 2012 Report Share Posted April 4, 2012 Im not saying it doesnt **** to have breathlessness but I do think that many POTs patients - particularly those with high HR - have breathlessness. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 4, 2012 Report Share Posted April 4, 2012 Thought you might want to view this: http://dermatology-s10.cdlib.org/1502/reviews/photoessay/riderphotos.html Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 5, 2012 Author Report Share Posted April 5, 2012 Thought you might want to view this:http://dermatology-s...iderphotos.htmlThat is a skin condition, it's a different form of polymyositis, 'm just looking for lung things.. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 6, 2012 Report Share Posted April 6, 2012 It is a form of polymyositis and may be worth knowing about as some of the skin lesions can be very subtle but are valuable for diagnosis. Dermatomyositis, being a form of polymyositis, can also affect the lungs. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 6, 2012 Author Report Share Posted April 6, 2012 It is a form of polymyositis and may be worth knowing about as some of the skin lesions can be very subtle but are valuable for diagnosis. Dermatomyositis, being a form of polymyositis, can also affect the lungs.Mine would have to be ultra subtle because I can't see any Quote Link to comment Share on other sites More sharing options...
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