im4god2010

On September 13, 2016 at 8:29 AM, SarahA33 said:

Hi, Im4God2010, Welcome to DINET.  What is your diagnosis?

I've never had a pulmonology test, but like Statesof mentioned, I've had heart tests (echo, bubble echo, stress test, MRA of the aorta) for occasional SOB and SOB upon exertion, which basically revealed the same as him, a PFO, and mild regurgitation & prolapse.

Well I have a diagnosis of POTs and I have lupus, fibromyalgia and chronic iron deficiency anemia and this chest pain and shortness of breath is really bothering me. I know now people are saying it's because of the pots and I never knew that I had two pulmonary function test done one was abnormal one was ok makes no sense to me as as you can't go from abnormal to normal on a week but this has been going on for a while and I can't get anyone to get me answers so I am glad I found the website here so I can get some opinions from others dealing with the same thing. So we will see thanks for your information 

On 11/21/2013 at 10:52 PM, Anoj said:

http://www.dysautonomiainternational.org/page.php?ID=166

Is this true? I have already send my protest emails. (Not that it would do much.)

Hi there, I am new to this site and so I am just getting around to seeing people post. I am so sorry that you are going through this with insurance....You know when I got very sick last year and my BP dropped to 86/60 I almost fell in the shower....I went to the ER and they put me in the hosptial. When my cardiologist came in I looked at her and said I cant take this anymore and I amnot leaving until they figure out why my BP is so low and I cant get up without feeling like I am going to fall....I told the electrophysiology doctor the same thing and I got my tilt table test and EP study done in the hosptial and everything got covered. I was tired of livign like that going to doctors that make you go to more doctors and I am glad that I put my foot down and now we know I have POTS, Lupus, another autoimmune disorder...if you get bad go to teh hosptial then demand they do it there.

On 7/13/2016 at 11:31 PM, Kris4444 said:

I have a complicated medical history, MCTD, dysautonomia (hyper pots), EDS, global GI dysmotility among other issues. Each specialist says that the disorder they are treating is what is probably causing my gastroparesis.

Currently I am going through a terrible flare with my GP and happened to have a bad episode of pots last night. I reached out to my neurologist to see if he thinks the two are related and he does believe that the autonomic dysfunction is causing the GP. 

How many of you believe that your GP is caused by your autonomic nervous system problem and what are you doing to effectively treat it?

I tried domperidone but had to stop due to prolonged QT waves. I took reglan for years but was having side effects so started iberogast in January. Up until the last 2 months I've been managing things but as of 2 months ago I've had to pull all meat from my diet. I was doing ok on fish and peanut butter but still having a lot of pain and bloating. My doctor has me on xifaxin and I'm almost done with it but I think it's caused more stomach pain.

I get really bad pain on my left side that always lands me in the hospital. I have gone a  year and a half without it but now have been battling it for almost a full week and it's wearing me down. When it gets like this the only option is to go to the hospital where they will admit me and take away food and water and help with pain management. I have had an ileus before so they take it pretty seriously even though they've never been able to pinpoint what is causing the pain. We also know that the antrum portion of my stomach doesn't work, that is the portion that grinds your food.

I'd love to hear from others whose GP is related to their dysautonomia and how they are treating it. Thanks!

 

Hi there I am new to this site and I just saw yoru post. Well I am in the same boat. I have Gastroparesis (slow mobility of the stomach) and before I knew about POTS it was being caused by my Scleroderma and lupus. Now my Gastro Dr put me on reglan and protonix (that helps with stomach acid) however the reglan you are only suppposed to be on it for a certain amount of time and then off of it...I have been on it for three years to long....I see you tried teh domperoidone I am seeing where it caused some heart problems and that is soemthing not good he mentioned that to me about that medicaction and so I said no thank you...no more of those problems have enough thank you.

I have recently moved and have a new doctor that is looking into somehting called 

OCTREOTIDE-it si an injection you give yourself and it is supposed to help with bacteria in teh stomach and stomach mobility. Now I have not heard from him about it yet but he is working on it worth asking about.

I have had teh side abdominal pain as well and it has come on in the last week and a half now I am in some serious pain but I hate going to the Hosptial and I hesitate but I might have to pain is to much 

I see what you have had to go through and I would be flippin. I am going to call the doctor today and if I get on this medication I will let you know. I hope that this helps and am also going to have my doctor look into some of the things you have listed and see if maybe that is causing some issues with me.

On 7/31/2016 at 3:26 AM, DizzyGirls said:

My daughter has been going through it.  We are counting the hours until Monday morning and I can start calling some doctors to put some pressure on them to see her urgently.  She had labs done last week and, according to the results and her symptoms, could easily have lupus.  I would suspect this is an intense flare she is going through.  Also due for her depo shot and has had horrible vertigo that we think is part of a continual migraine that has lasted almost a week.  Think her depo shot might alleviate the migraines some, but in a massive search for a rheum. within our insurance plan.  Any help dealing with EDS, Dysautonomia, AND lupus would be greatly appreciated!

Hi there, Yes I have Pots and lupus. It has taken the doctors about almost two years to get to the bottom of everything but we finally started getting some answers last year. My Blood pressure had dropped to 86/60 and I almost fell in teh shower...went to the ER got admited they called every doctor under the sun to help and they got a hemotologist involved and it was him that said I had lupus so dealing with lupus and POTS togethter is tough because you are not sure what is causing what symptoms. The tilt table test was a easy diagnosis for the POTS and then the blood work for the lupus... I have lots of flares they are worse when it is time for my cycle to start...but dealing with pots and lupus together is hard....I hope that you get some answers and that you can get soem help. 

On 8/20/2016 at 5:43 PM, Rainy said:

I'm new and this is just my second post. I'm  still waiting on some test results and discussion of them with my doctors. I get an EMG Tuesday.  I wanted to ask if anyone else has had this symptom: For the past few days, I have tremendous head and chest pressure (not pain), extreme fatigue (seriously feel like I'm going to lose consciousness or drift into a coma at times), and shortness of breath.  It's pretty frightening because I feel there is something very wrong but I cannot figure out what it is. All these symptoms get far worse when I'm upright. My blood pressure and heart rate, however, are pretty normal.  Actually, my heart rate is low (50s-60s) and my heart skips beats after eating.  I'm wondering if the bradycardia is because I am so fatigued. I feel like I have the flu but no fever or cold symptoms -  just run down, body aches and stiffness. The symptoms have a pretty much kept me in bed ridden except for getting something to eat and going to the bathroom. I went to an urgent care facility a few days ago and my CBC and electrolytes were normal,  except for being slightly anemic which I always am. 

Hi there, I as well get chest pressure/pain and shortness of breath. I have wondered about this myself as all my lung test have come back ok and my heart test except for a little bit of elevated pressure in the heart. I wondered about this and if there was soemthing else causing this that we are unaware of and now I have an idea its the POTS. I do get fatigued I am chronic anemic and have lupus so that does not help but I just got put on a beta blocker and that is supposed to help not sure yet if it is I have not been on it that long but I sure am lightheaded on it more than before so we will see. I know the feeling feeling sick alot it stinks. I guess this is common with this disorder from what I have heard.I hope that you feel better soon

On 12/26/2012 at 7:28 AM, jenniferlynne76 said:

Hi all,

I'm very curious to know if any of you have ever experienced pain on one side of your rib cage, sort of leading up into the under arm area. My pain has been there in some form since July (in fact, it was one of the first "symptoms" I had), and it was originally diagnosed as chostochondritis, which my neurologist questions. He seems to think the pain may well be related to the dysautonomia, as many patients have inexplicable pains in their limbs and such. I can go days without feeling anything there and then all of a sudden, just the worst pain imaginable. It hurts to the touch, so it doesn't feel "muscular" per se -- like caused by a certain movement (though that doesn't always help either). I've had CT scans, xrays, massotherapy...nothing seems to help, which makes me think my neurologist is right and this is probably just one more of those things. I have an acupuncture appointment this morning and plan to mention it to my practitioner to see if there's anything she can do to help ease the discomfort.

So...am I the only one out there with this weird symptom or do I have company in this area, too? :-)

-Jen

Hi Jen,

I have not had any until about a week ago and it started on the left side in my abdomin and moved up into my ribs. Now I had an appointment with a lung specialst friday and I mentioned it to him and he blew it off....will not be going back there. Since it is so hard for em to get into my PCP I thought he might know. So yes I have started getting those pains and this one wont go away and it hurts...know its nto a muscle pain as I do not workout or lift anything. I feel you literally and I am not liking it...if you get another answer let me know be interested thanks

Has anyone ever had a Loop recorder put in and  if so what all is involved? Has there been any problems after having it put in? My doctor is thinking about maybe doing one and I would like to hear if anyone else has had one or has one now.

I appreciate all this valuable information. I do knwo that on the echo I just had they did see a little bit of an elevated pressure in the heart...so I am not sure. He put me on a Beta blocker not sure I like how it makes me feel seeing that I already have low blood pressure and they have been known to lower BP. So we shall see thanks for all the information.

I am wondering if anyone has ever had constant shortness of breath and chest pain....I am new to this and not sure what is going on but I have had two pulmonary function test and one came back abnormal and the other one I had a week later was ok so not sure what to think about that. I know that there is something going on just not sure what...so if anyone else has ever had this please help me out. Thanks

On ‎4‎/‎8‎/‎2014 at 2:32 PM, Confusedguy said:

I've had the same issue for a long time. My Neuro sent me to a Pulmonologist. After several tests they found I am only breathing at 52% of normal. It's worth checking out.

On ‎4‎/‎8‎/‎2014 at 2:32 PM, Confusedguy said:

I've had the same issue for a long time. My Neuro sent me to a Pulmonologist. After several tests they found I am only breathing at 52% of normal. It's worth checking out.

yeah I have had these issues also however I went to a pulmonogist and had a PFT and it came back abnormal then a week and a half later I had another one and t was normal not sure how that happens but it gets frustrating because when you are like this and you cant breath and people including doctors don't believe you it s hard to deal with just keep pushing through until you get an answer