Parages

Congrats, best of luck.

I've had a lot of different tests done over the past few months, I haven't been told of any indication of cancer, thyroid problems etc. I have heard about gastroparesis but I'm not having any issues of nausea or vomiting. I have seen a gastro specialist and he told me that he thought i had GERD but that was it.

Just curious if anyone else has experienced weight loss. I was diagnosed in January and since then I've lost close to 20 pounds without making any major diet changes. My hunch is that some it may be loss of muscle mass since I haven't been nearly as active as I used to be but it still seems a bit extreme. I've mentioned it to the doctors I've been seeing and so far they haven't seemed overly concerned or ordered any tests related to that.

I just finished wearing a heart monitor (3 week study) two days ago. I've been having the same issues of being short of breath, my situation is a high BPM but low blood pressure. Doctor didn't seem too concerned with the high heart rate or low BP but it does seem to like it would put strain on the body over a long period of time, it's honestly one of my biggest fears that I'll just have a sudden heart attack or stroke. Yet none of the doctors seem to be overly concerned over it and just tell me to drink water and eat salt.

I've been having issues with shortness of breath as well the past week. Is there anything that can be done to help alleviate it? I've been doing the usual water/salt but doesn't seem to be impacting it. It makes me really nervous.

Same thing happens to me, I'll be sitting at my computer desk for example and it just comes out of no where. It tends to happen more frequently after large meals as well. Usually what helps me is having some water and a salty snack.

Just curious if anyone else has a weird feeling of pressure in the lower left abdomen (and sometimes my lower left ribs). I'm planning on call my Urologist tomorrow to see if he needs me to come in. But I've noticed since the weekend I get random pressure feeling there, I've Dysautonomia can cause Cystitis but wasn't sure how accurate that is. I'm also on preventative UTI meds, so I doubt it's a UTI (but possible I suppose).

I'm a guy, was just diagnosed in January.

Thanks, I will be getting a vision test my ENT also wants to do a hearing test and possible MRI of the brain since I've been having intermittent numbness of face (right side cheek) and temporary hearing loss (lasts about a second or so and then I hearing a ringing noise).

Hi folks, Just curious if anyone else randomly has blurred/double vision? Its weird, when I'm using a computer my vision is fine but when I use my smart phone sometimes I get double vision around the numbers when dialing the phone. Not sure if double vision is even the best way to describe it, it's basically like each number has an outline of itself around them. I don't seem to really notice it other than when using my smart phone (and specifically when using the dialer) nothing else seems to trigger it. I also get occasional blurry vision if I'm in a really bright room as well.

Thanks for the feedback everyone - I'll check out that nova sonic device / hot water

How long do you find your tension headaches last? I'm going on day 3 of the back of my head and neck feeling tight on the right side, not sure how long is "too long" before I should see a doctor, I'm just so burnt out from all the doctor visits since I've been diagnosed . My ears are popping as well when I swallow, not sure if related to the headache or sinus. Any at home remedies for relaxing the muscles when experiencing these headaches? I try to avoid medications when possible.

Thanks for the responses - Katybug - I know what you mean by the feeling of veins being constricted, that's a good way to describe the sensation I feel as well. I assume it's from the muscles/nerves having a spasm in my case. Do you find anything in particular helps relieve it? Or if anything specifically triggers it? In my case I was sitting down working (on my laptop) when it hit me. I'll admit that sometimes I forget to have my salty snack or drink water often throughout the day when I'm busy working.

Not looking for a diagnosis, just curious if anyone else when they get lightheaded also notice tightness in neck/back of head when this occurs? I noticed that I felt in a strong pulse in my neck and back of my head when this occurs. It seems to pass after I've had some water and a salty snack. I just get really nervous when it's going on because it feels like my whole face/head is tightening up.

Thanks for the feedback everyone - it seems to have cleared up after about 2-3 days.

Curious to see if anyone else ever has an odd tingling sensation in the check/forehead area. It specifically seems limited to the left side of my face and it comes and goes, I also tend to get a minor headache when this occurs as well. Not sure if headache is the best description as it isn't so much pain as it is a nagging feeling of not being "myself" and it can be hard to read/focus.

I appreciate the information, I'll look into that doctor.

Hi, I was born with a condition called lumbo sacral agenesis, basically scoliosis of the spine. I've always had poor circulation in my left foot due to nerve damage but never swelling. When I started having my issues lately my left foot has been pooling with blood and swelling, so I wear a compression sock to try and help with that but it's hit or miss. What the doctor told me is due to my curvature my tissue has worn down in my lower back and a bone is putting pressure on the nerves. He advised that my symptoms are expected for someone with my type of condition. He prescribed Bacolfen to take at night, which I've yet to take to be honest because my stomach is already messed up and I'm worried about making it worse. He also mentioned botox injections in my back as a possible option of treatment. I don't have any allergies that I'm aware of but I have been told that I have acid reflux so I've been trying to cut down on fatty foods and sauces etc. but I slip sometimes. But even now as I type this my stomach feels "off" and it's possible the food I'm eating is contributing to this. At times the nausea is so bad I just put off eating (like tonight). Edit: - forgot to add that I also had a tethered cord, which was untethered when I was 3 or 4. That untethering left me with nerve damage (can't move my left foot, numbness/weakness on left side of my body) so doctors have always told me they would prefer to not operate again due to the risks unless they absolutely had to.

Hello, I'm a 27 year old male from New Jersey and I've been recently diagnosed with Dysautonomia, secondary due to spinal cord compromise. What at first was a feeling of happiness of just knowing what was wrong with me has quickly turned into confusion and concern over my new found information. I joined this message board in the hopes of being able to share some of my experiences and get feedback from others regarding theirs. At the moment what I've found is that my leg and arm muscle spasms come and go fairly quickly but the discomfort I feel in abdomen has lasted for days. Even as I type this my lower abdomen just feels incredibility tight (and when I walk I feel an odd popping sensation near the lower rib) it doesn't hurt but it is annoying. I have also been dealing with constipation the past three days but luckily today has been the first day it hasn't been an issue. I'm curious to know how often to expect the abdomen discomfort and if anyone else notices tenderness/tightness in the lower rib area. Edit: Thought I should add some of the effects I experience from Dysautonomia in case anyone has any tips or suggestions for managing them. - Shaking in leg muscles (generally back of upper leg), usually ends up my leg locking up and I have trouble standing at that point - Pins and needles in hands, occasional tremors. - Fast heart rate, even from doing basic tasks - Light headed and occasional blurred vision - Headache/Migraines, feels as if there is a grip around my temples. - Constipation / abdominal tightness and tenderness. *for the constipation I started taking Miralax which has seemed to help, I'm also taking probiotics. - Feel tired all the time