As an EM patient, I am writing to ask the other members here if anyone has a chronic cough along with EM? I have had this horrible cough for the last 5 months. My Dr. has done all kinds of testing and there is nothing to indicate a cause. Now my primary care and pulmonary specialist believe the nerves involved in the cough reflex have been damaged. They are treating with cough suppressants and amitriptyline. Ironically, I am finding some relief for my feet while the cough rages on. I am asking for anyone with a similar experience to please get in contact with me. My docs are stumped and we could all use some helpful info. Thanks to all.
I am so sorry Shih Tzu Mom. I myself have not so I can't be of help there but interesting so say your feet are better.
I the past 4 years since my symptoms presented I have had other neurological problems that come and go usually months at a time. I have found that often when I am having more severe other symptoms my EM in general has been a bit better during those times.
For instance I normally have very good blood pressure to the point doctors will comment to me.....Wow our blood pressure is very good! Then I went through about 4 months where it suddenly became dangerously high. It was so high my GP sent me straight away to the emergency room. As soon as I would sit or lay down it would return to normal but within 5 minutes of standing it would shoot up to 165/120.
Even stranger it would be my bottom number that had them so concerned. They couldn't give me blood pressure meds because when I wasn't standing it would get too low. They just told me to monitor it when I was standing and if it happened to sit or lay down. It happened every time so I spent a great deal of that time not standing much. Then just as suddenly as it began it just went away! during this time I still had EM but the burning was less severe. Strange!!!! My Doctors have no idea what is causing mine as well but they are suspicious of an underlying autoimmune disorder. Neurologically they couldn't find anything wrong.
All I can think of is when one part of your body is being attacked other parts are less severe because whatever it is seems to attack a different part of the body or system . I know that doesn't really give you any real answers but just know you are not alone as far as having other strange and unexplained symptoms.
I have EM flares in my chest, neck, head, lower back, knees, lower legs, feet, elbows, lower arms, wrists and hands. The EM effects my entire body now. A few years back it was only affecting my small blood vessels, now it affects all them including the larger ones. Wherever you have blood vessels you can have a flare (in my opinion and experience).
To get to the point, I was at a neurologist appointment when they took my blood pressure and said, "your blood pressure is high", I explained I had had a cough for a couple of weeks and it was getting harder to breath. When I left the neurologist's office (because they offered no assistance) I called my primary physician for an appointment for my cough. As soon as she heard of the cough and rise in blood pressure (my blood pressure has always been good, so far) she instructed me to go the ER. I went through all their breathing treatments to no avail. The x-rays didn't show anything. They were stumpted. I went home without diagnosis or instruction so I had to limit my activities even further. I pretty much was in bed for 3 - 4 days and it finally started getting better on it's own. Because of the lack of diagnosis and my blood pressure has been normal ever since, except for when I have flares in my chest-lungs. I strongly believe I am having flares in my lungs or in the airway somewhere. Someone please correct me if this is not possible. I have an appointment with my physician in a couple of weeks and will not have a definite theoretical answer until then.
I hope some of my ramblings made sense and are helpful in anyway. I will gladly share my physicians thoughts on the subject after my appointment.
Thank you both for your informative replies to my inquiry. I am seeing the pulmonary Dr. again on Monday for a bronchoscopy. I mentioned to him the other day that I had heard from another member, dkel9307, and told him of your situation. Unfortunately, he did not lend much credence to the similarity. Basically, he said if you take a group of people that share a diagnosis, it wouldn't be uncommon for that same group to have a few that have a secondary condition. I guess he would have paid more attention if there were more of us with the same symptoms. I wouldn't be very happy to learn that there is. This cough is hideous! 5 months of constant hacking is enough. Thank you both for sharing your experiences with me. I wish you both well.