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Not sure APS, lungs or heart?!?!
I'm new to this so here it goes... I have a major request that I would like some opinions on. I have been feeling lightheaded and heavy chested (feels like something is in my lungs, like a toxic gas or something) for the past 4-5 weeks, and now feel a sense of hot flashes around my neck area (usually after eating, but even lying in bed, now just randomly at times). Sometimes, it feels my blood pressure goes up, and at other times feels down. Even at night, I sometimes feel lightheaded, so I need to get up and drink water. It was on and off on some days, but recently has been getting worse, even on a daily basis (most recently hourly) . I already went to the ER once a couple weeks ago, then again this past Thursday (and almost 2 other times) where they took a CAT scan to check my brain and lungs. I have also been doing all sorts of blood work to check for internal bleeding, anemia, my iron count and even my thyroid. Still waiting on my hypothalamus test, which my friend suggested since I get those funny hot flashes around my neck.
By the way, I also had a PE (clot in my lungs) in November, where I had similar symptoms, but was taken care of with blood thinners. I also was recently diagnosed with APS Antiphospholipid syndrome (which causes clots), but when I went to the ER on June 27, they found none (via contrast CAT scan). My doctor and hematologist both said that I need to be on Xarelto for the rest of my life, but that it should not cause all of these symptoms.
So, the good thing is that everything is normal (at least from a medical perspective), but the bad thing is I don't know why I'm feeling this way, and it feels super terrible. I think I already had 8-9 blood work done within the past few weeks, and it makes me feel down. During the past weeks, I felt 50/50 on whether to go to the summer school each day, thinking whether I can make it through the short day. Last week, I went to see an ENT (everything was clear), and then a neurologist this week. My primary care giver has tried to help, but he (as well as I), are running out of options. Others have suggested a cardiologist which I will see on August 8. Recently as of Thursday, my chest has gotten sore while lying down. That's the reason why I went to the ER on Thursday, because I got up after only a couple hours with my heart racing and my body flushed. I am getting so desperate and distraught. Any thoughts, suggestions, or words of advice from anyone will help...Scott
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It’s so complex to explain. The treatments I’ve tried are Mestinon, IVIG & Prednisone. I’ve had varying degrees of difficulty & success with each. Next up is CellCept.
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1 ReactionThank you! Sounds like your treatments are extensive and expensive. Doesn't IVIG cost a lot? I tried looking it up.
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2 ReactionsTry seeing a neuromuscular neurologist and be tested for small fiber neuropathy. I have cardiac autonomic neuropathy (CAN) NOT saying that you have it. Your symptoms sound like a lot of my symptoms. Dizziness my blood pressure going up and down along with tachycardia/bradycardia( heart beats too fast/or too slow). Keep a blood pressure cuff beside your chair or bed. Check it laying down and when you first get up. Check anytime you are feeling funny. Keep a log with time, date, BP readings at that time your symptoms. My cardiologist did a one month holter monitor test on me showing the bradycardia and tachycardia. Then a tilt table test fun! For two weeks my BP very high 150/100 the dropped 90/50 passed out it returned to normal. We have had to learn the hard way no blood pressure meds. When my pressure goes up stay in bed until it goes back to normal where I don’t injure myself falling. During this time I get horrible migraines.
IVIG therapy your doctor can apply for patient assistance mine did.
There are many treatments available for AI diseases but there are many AI disorders so the first step is getting a diagnosis. Since you are seeing the cardiologist tomorrow I would mention your concern about a possible AI disease like lupus, just to get him/her thinking in that direction. He/she may be willing to do some screening tests and refer you to a rheumatologist. They are sometimes hard to get into so ask cardiology office to contact the rheumatologist office and ask for an expedited appointment so you don’t have to wait for months. The chest discomfort may respond to naproxen, an anti inflammatory, if it’s pleurisy or cartilage inflammation, but clear that with cardiologist since you’re on xarelto. A heating pad may help chest also if it’s inflammation and worth a try. Pleurisy causes chest pain with a deep breath, often sharp. Chest wall pain from inflammation of cartilage (costochondritis) causes tenderness upon pressure over the sternal edges or ribs. Both are common in lupus. This will require patience as AI diseases are not diagnosed quickly, so symptom relief is helpful until a diagnosis is made. I wish you luck and a speedy answer and relief!
Again, very thorough and helpful. Thanks for really taking the time to help me through this process! One last symptom that has been giving me a really hard time lately that I did NOT mention was feeling extremely hot around the head and neck area (usually after eating, but also lying down, sometimes casually sitting). I did not mention it because it was not that bad until the past few days. The ER mentioned possible acid reflux or GERD, so they gave me Mylanta and I tried Prilosec. It originally got better, then now worse. Could this too, be related somehow to my APS and possible other autoimmune diseases? In my wild imagination, I think of my APS attacking some kind of cells in my lungs, which is counteracted by other cells trying to fight them off. Regardless, it seems as though the interaction between the two is creating the heat.
Dr do not listen about rib pain. I have 4 kinds of diagnosis with auto immune diseases. Feels like a lympnode swollen there with pain if touched. They say fat pocket?
Thank you for the name for bone pain.
Hammock117, fat pockets, called lipomas, are usually soft, a bit squishy and nontender. They are common, benign small fatty tumors that usually require no removal. A bump on a rib that is hard should be xrayed. It can be from inflammation of the cartilage (tender) or something more serious. Lymph nodes can sometimes be felt above or just below the collarbone but not usually lower. I hope this information helps you and I hope your doctor will not just dismiss your concerns. If that’s the case get a second opinion perhaps from the doctor who treats your AI disorders.
Scottham, try to find out if a D-dimer blood test was done when you were checked for PEs, as well as your oxygen saturation levels ( should be 94% minimum if lungs healthy). Blood test would be high, O2 saturation low in face of a PE. You can buy a pulse oximeter for home oxygen monitoring for about 50.00 at most stores and Amazon. Well worth the peace of mind! I have never heard of GERD causing hot flushes in head and neck. Since your symptoms are persistent and perhaps worse I think you should relay this information to your doctor. You should also have a hyper coagulation (excess tendency to clot) workup by a hematologist to determine if any other clotting disorders are present, as there are many that can coexist and require different treatments. Please keep us posted on your progress!
Whoops I see you have a hematologist already. I hope your cardiologist appointment goes/went well today.
My heart goes out to you. With all those symptoms and blood work not showing , it is super frustrating. Just keep on being persistant. It may take years for it to be found out what is going on & it is such a relief to get a diagnosis. Hopefully, the time will come when you get the right doctor and get some help.
Margaret