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Unknown Disorder/Disease - Chest and Neck Issues
Hello everyone, I'm a 27 year old male. For the last year, I've been having bouts of flare ups throughout the year. The flare up cause symptoms that mimic a heart attack. I get a lot of tension and pressure in the chest, mostly near the shoulder joints, the sides of the neck, and in the sternum. The cramping can also come along with arm numbness or the feeling of it being weak. It doesn't always hurt, but it has in the past on occasion.
I have been to the ER four times for this, I have seen two neurologists, a rheumatologist, a cardiologist, a sports medicine doctor, an orthopedic surgeon, and a neurosurgeon. No one has been able to find anything wrong with me. I have had countless imaging tests, including a CT of the brain, thoracic outlets, cervical spine, and thoracic spine, a CTA of the brain and cervical spine, and MRI's and MRA's of the brain, cervical spine, thoracic spine, TMJs, and both brachial plexus. The only thing found were light to moderate sinus inflammation of the frontal and ethmoid sinuses on the right side of the head, and degeneration of a few discs in the neck and back. I have no muscle tears or apparent pinches anywhere.
I have had a lot of blood work over the years, including Troponin tests, all kidney function panels, heart panels, stroke panels, etc. My heart is supposedly perfectly fine, my injection fraction is around 65%. Despite my heart, starting in the last month, having a cardiac arrhythmia, where my heart rate will randomly jump around between the 50's and 110's for the bpm, but the heart beat is perfectly fine. Other blood work has been my ANA panels which are negative, and I also had my basic hormones and some Anti- tests done, which all seem to be in normal order. Although my testosterone hasn't come back yet, my estrogen, cortisol, and thyroid hormones are all within normal measures. I was tested for Sjogrens and Lupus Antibodies which are negative, for the few that have tested.
My orthopedic surgeon believes I am overly mobile, where my joints and muscles are "triple" jointed. As such, he believes physical therapy may help, but I was in it for three months last year and I saw no change. Although, he has suggested I go in for muscle strengthening on the upper back instead of strengthening the pectoral muscles.
I have been having very dark and depressing thoughts and my fear of dying from this grows every day because we have no answers for this. I have spoken with a therapist and we have tried a few medications over the last year in which none of them have helped take that edge off, and a few caused hallucinations and one caused permanent nerve damage in the back of my forearms, so we have had to stop them completely.
I'm looking for any guidance from anyone who has been through something similar. I can't be the only one going through something like this.
In short, I have been having heart attack like symptoms with no signs of a panic attack (with two of the largest flares being around friends having fun playing board games and playing a game with an online friend), and no signs of heart damage. There are no masses in the body, my blood work is completely normal, and no muscle tears. When everything flares up it feels like my heart stops or skips a few beats and a tight pressure overcomes the pectoral muscles. Minor flare ups will normally cause a bunch of heat in the edges of the muscles normally, at the sternum, near the collarbone, and under the armpit around the pectoral minor muscles, with some burning also coming over the pectoral muscles under the nipples and around them. This feeling can also come along with numbness in the outside of the hands, the fingertips, sometimes the entire arm, or even numbness around the collarbone on both sides. Sometimes I also get headaches where my forehead and temple feels like it is on fire, but I do not have migraines and have had an EEG which was fully negative for any seizure or epilepsy (which I had to stop the at home study after 18 hours of it on out of 48 hours, because I was allergic to the flu used for the electrodes).
I have heard sleep apnea may be a factor but the test was somewhat inconclusive where it may just be a severe bout of allergies causing the issues breathing at night. We tried to do another st home one but I can not because he pressure on the hands/fingers keeps me up due to pain.
On top of all of this, my eyes have been having more issues and I've been coughing a dry cough for a few weeks now, after starting Trazedone two months ago and having to pull myself off because the dry eyes and mouth were bothering me.
Please, let me know if there is anyone special I should see, some specialist doctor, or even what blood work I should ask for from my doctors. My life has been put on hold because I can not drive with these flare ups causing eye issues (the largest flares up caused my sight to go red on the bottom half) and chest issues mimicking a heart attack. I am truly worried for my life and scared to go to sleep every night.
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Has your cardiologist worked you up for Prinzmetal’s Variant Angine?
https://www.ncbi.nlm.nih.gov/books/NBK430776/
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1 ReactionThey have not, although I did have to ask for a stress test which just happened this past friday. I had one just before all of the flare ups started last year, a few months before actually. This is the first one during all of this. Though, I am on Amlodipine already, as well as Olmesartan. He started Atenolol in a very low dose after the flare ups started to help control my heart rate so it go extremely fast during as the first few episodes caused panic attacks because I didn't know what was going on. We still don't know, but, I am a little more calmer when it happens. I have had many heart echos since then which shows no issues, and a holter monitor for 48 hours which did catch a minor flare up but the ECG seemed normal during it I was told.
I will definitely ask him about it to see what he believes as he's been willing in the past to help everyone else including my parents with tests, it just seems I am overlooked when the normal tests come back negative from all of my doctors.
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1 ReactionYou mentioned you are hypermobile. I am looking at some of your symptoms. Has anyone mentioned a possibility of EDS? There is more than one type, and some people have more than one. Major, unexplained issues can throw our whole body and mind into a tailspin. Sometimes even little things are exacerbated by fear of the unknown of what our bodies are exhibiting. We seek answers for causes so we can move forward with treatment, tools, or knowledge for dealing with our issues. I hope you find answers soon.
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2 ReactionsMy massage therapist mentioned it to me, although, the other symptoms that would normally accompany it I do not have. I have always been a very fast healer, I do not bruise easily, and as far as I know, my skin doesn't stretch more than anyone else's would. I have been Vitamin D deficient for somewhere around 4 years now, even taking something like 10,000iu daily isn't raising it quickly, but it has been steadily raising it these last few months with the change up in dosing. The skin doesn't feel any different to any of the doctors I have seen so far, as well as the the skin quickly retightening when letting go (which can also be used to test severe dehydration I understand). I can always ask them about it, but, as there is only a few forms that can be tested for, it would be a hard diagnosis.
Hi Jacob,
You need to ask your doctor about ordering a CTA Heart (it gives a picture of your heart in detail. I kept knocking on doctor doors until somebody listened to me. I went to a cardiologist concerning my afib and he ordered a Nuclear Med scan and called me regarding the " normal results"-per cardiologist, I asked for a CTA Heart scan and he stated that I didn't need one. He said to f/u with him in a year, I had a brain stem stroke exactly 2 weeks later.
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4 ReactionsYes, it is very tricky. I recently was made aware that I exhibit most of the symptoms of the EDSh, and in going back over my childhood issues I am guessing I have always had it. The "it just did not have a name and has not been a huge problem until I am getting older.
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1 Reaction@bigscraps
I would further explore what is going on in your cervical spine.
Since you are hypermobile, you may be having functional compression of your spinal cord causing many of your symptoms during “flares.” You may need to see several orthopedic spine specialists for 2nd and 3rd opinions. You may need a functional MRI (fMRI) of your cervical spine to show how different positions of your head/neck impacts your spinal cord.
Did your neurologist do EMGs/nerve conduction studies of your upper and lower limbs? Did they do a skin punch biopsy of your thigh/calf/ankle to test for small fiber neuropathy?
Do you notice any difference in your hand grip or handwriting? Do you ever drop things or notice it is harder to open jars? Does it seem harder to lift things than usual or button shirts? Do you notice a difference in bladder/bowel control? Do your legs feel heavier/slower when you walk?
What levels of your cervical spine show degeneration (c5-c6 or c6-c7, etc.). Did you ever have a car accident or concussion that may have injured your neck? Did your orthopedic spine specialist test your reflexes, watch you walk, review all symptoms and MRIs, and assess you for degenerative cervical myelopathy (spinal cord flattening/compression injury). I have this and was misdiagnosed for over 5 years until my 4th orthopedic spine specialist diagnosed me properly and fully listened to all symptoms, asked me lots of questions to narrow down to cervical myelopathy which requires urgent ACDF surgery.
1. https://www.orthobullets.com/spine/2031/cervical-myelopathy
2. https://www.ncbi.nlm.nih.gov/books/NBK482312/
3. https://spinehealth.org/article/cervical-myelopathy-explained/
4. https://orthoinfo.aaos.org/en/diseases--conditions/cervical-spondylotic-myelopathy-spinal-cord-compression/
@bigscraps
Another test you should consider if you haven’t already had it is a SSEP.
1. https://www.spine-health.com/treatment/diagnostic-tests/somatosensory-evoked-potentials-ssep
2. https://my.clevelandclinic.org/health/diagnostics/12393-evoked-potential-test
3. https://www.neurophys.org/wiki/Somatosensory_Evoked_Potentials_(SSEP)
4. https://www.medicalnewstoday.com/articles/somatosensory-evoked-potential-sep-test
@bigscraps, you've gotten a lot of suggestions and possibilities to explore from members here. I hope this can help focus your discussions with your doctor.
I think it is also important to take care of your emotional and mental health. You said you're afraid to go to sleep at night. At the same time, you know that sleep is important for your health. At the risk of adding another medical professional to your many specialists, you might consider talking with a therapist to manage your mental well being as you continue to seek a diagnosis.
Let us know what you found helpful and what list of questions you've prepared for your next visit with your doctor. Who is coordinating your care? Your PCP?
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2 ReactionsI haven't asked for one yet, although, I have had a MRI and MRA of the brain and cervical spine. For my heart, I've had a stress test, holter monitor, echo, and some others. I haven't had a CTA of the heart, although, I did have a scan of the entire chest a while ago, which I believe did see the heart.