1. < Brain & Nervous System

Unknown Disorder/Disease - Chest and Neck Issues

Posted by JacobG @bigscraps, May 4 12:59am

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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

JacobG | @bigscraps | May 14 1:31pm
In reply to @dlydailyhope "@bigscraps I would further explore what is going on in your cervical spine. Since you are..." + (show)
@dlydailyhope

@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/

Jump to this post

A lot to go through on this one, but I think I can answer all of it. Mild broad disc protrusions and a minor shift of C6-C7 to the right is what the report said there.

I actually asked for a functional MRI of the cervical spine and my neurologist stated I was too young to have one done, and that I didn't need it at all. She has never ordered any studies other than a slee study. My sports medicine doctor did an EMG down both arms a few months after everything started and there was zero loss of signal. Could be more now, but back then it was fine. I also asked about a muscle biopsy or skin biopsy for the chest or likewise and she turned me down there as well.

I have noticed that my grip feels a little weaker, but if I mimick drumming or actually try to play the drums, I am not throwing my sticks, so my grip seems fine. My handwriting has always been atrocious but it hasn't changed from what I can tell. My legs feel fine, other than after Physical Therapy which leaves them sore for 1-3 days later (deadlift to strengthen the core). I haven't noticed any difference, although my physical therapist did suggest that it is because my body found alternative means to keep me lifting things which hurt my upper back and posture.

I also just fired my Neurologist because I was 2 minutes late to the online appointment (notice she has been consistently 6 minutes late herself but was there in time for one), and I was late due to my therapist wanting me to read a few articles. She literally yelled at me for being late and disrespectful of her time and others. Then when I asked her what is her plan she got irritated because I told her that I needed to see my ENT of she believes I have sleep apnea or not because my jaw has been messed up for a while now and they just fixed the joint a little so I need to be careful about any constant pressure on the jaw. She then stated she never wanted to order the EEG but only did so because I asked for it when I had flashing lights in my eye sight (and still do for certain movements of the eyes). Basically, she was tired that I had other specialists because my cardiologist told me not to stop my blood pressure medication and she wanted me to. He trump's her there as I've been with him for 6-7 years now and he does care, but he also can be very busy, but he's saved my fathers life twice now. She tried to override the orthopedic surgeon saying it was a sternocleidomastoid issue when he believes it's a cervical spine to scapular area issue with muscle weakness. She never ordered any test outside of a sleep apnea test, and when there were discrepancies in the report got utterly defensive and suggested the test was fine (even through their at home sleep doctor team told me I needed a professional rest done and not the at home), and got upset when the team she recommended reviewed it and suggested something else. So, she is no longer my neurologist and I'm in the process of finding a new one. I do have a second opinion set coming for my cardiologist to be safe, and a new Rheumatologist as my other one just insists its my weight that is an issue.

REPLY
1 reply
JacobG | @bigscraps | May 14 1:35pm
In reply to @dlydailyhope "@bigscraps Another test you should consider if you haven’t already had it is a SSEP. 1...." + (show)

That sounds interesting. I'll be sure to ask about one, although, I would've figured the study done to rest the nerves in the same way from the shoulders to the fingertips (which btw - ow - those needles in the hand hurt) showed normal signals. It doesn't mean it's not impeded slightly before the shoulder, so I'll gladly ask.

REPLY
JacobG | @bigscraps | May 14 1:39pm
In reply to @colleenyoung "@bigscraps, you've gotten a lot of suggestions and possibilities to explore from members here. I hope..." + (show)
@colleenyoung

@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?

Jump to this post

My primary care was the main coordinator but he didn't know where to go from here after pretty much all of the results were negative. He suggested I find a doctor for rare diseases but the only one in my state has a 8 month waiting time. And, who knows what'll happen until then.

I do have a therapist that has been helping but the issue is I can't easily xo trol my thoughts from panicking when everything flares up again, or if I'm laying in my side or back and it feels like my heart stopped beating for a few seconds before I get palpitations and start to panic because of it. I've been trying to calm down and it has been helping a little, but, until I have a test done to see what medications would work, he insists that I never go back into any anxiety or antidepressive medication as the three they tried cause horrible hallucinations and my eyesight seems even more damaged after being off of them for a month or so now. We did try Xanax, Cymbalta, and then Trazedone, but all had side effects that weren't worth it.

REPLY
JacobG | @bigscraps | May 14 1:43pm
In reply to @colleenyoung "@bigscraps, you've gotten a lot of suggestions and possibilities to explore from members here. I hope..." + (show)
@colleenyoung

@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?

Jump to this post

I have found the variety of test possibilities helpful, and it helps to know other people are somewhat looking for an answer alongside me as even my own family has given up on it. At times, I honestly want to just leave everyone and be alone until we can figure this out. My doctor's doing a normal panel and giving up because it's a normal result is sadly... Normal for me. And I fear no one will figure this out to where I'll have to suffer with this for the rest of my life.

We did start PT like I said before in another post and my chest flared up severely that night. My jaw, my forearms, and left cheek by the left ear are all tingly feeling after it still.

REPLY
dlydailyhope | @dlydailyhope | May 14 3:44pm
In reply to @bigscraps "A lot to go through on this one, but I think I can answer all of..." + (show)
@bigscraps

A lot to go through on this one, but I think I can answer all of it. Mild broad disc protrusions and a minor shift of C6-C7 to the right is what the report said there.

I actually asked for a functional MRI of the cervical spine and my neurologist stated I was too young to have one done, and that I didn't need it at all. She has never ordered any studies other than a slee study. My sports medicine doctor did an EMG down both arms a few months after everything started and there was zero loss of signal. Could be more now, but back then it was fine. I also asked about a muscle biopsy or skin biopsy for the chest or likewise and she turned me down there as well.

I have noticed that my grip feels a little weaker, but if I mimick drumming or actually try to play the drums, I am not throwing my sticks, so my grip seems fine. My handwriting has always been atrocious but it hasn't changed from what I can tell. My legs feel fine, other than after Physical Therapy which leaves them sore for 1-3 days later (deadlift to strengthen the core). I haven't noticed any difference, although my physical therapist did suggest that it is because my body found alternative means to keep me lifting things which hurt my upper back and posture.

I also just fired my Neurologist because I was 2 minutes late to the online appointment (notice she has been consistently 6 minutes late herself but was there in time for one), and I was late due to my therapist wanting me to read a few articles. She literally yelled at me for being late and disrespectful of her time and others. Then when I asked her what is her plan she got irritated because I told her that I needed to see my ENT of she believes I have sleep apnea or not because my jaw has been messed up for a while now and they just fixed the joint a little so I need to be careful about any constant pressure on the jaw. She then stated she never wanted to order the EEG but only did so because I asked for it when I had flashing lights in my eye sight (and still do for certain movements of the eyes). Basically, she was tired that I had other specialists because my cardiologist told me not to stop my blood pressure medication and she wanted me to. He trump's her there as I've been with him for 6-7 years now and he does care, but he also can be very busy, but he's saved my fathers life twice now. She tried to override the orthopedic surgeon saying it was a sternocleidomastoid issue when he believes it's a cervical spine to scapular area issue with muscle weakness. She never ordered any test outside of a sleep apnea test, and when there were discrepancies in the report got utterly defensive and suggested the test was fine (even through their at home sleep doctor team told me I needed a professional rest done and not the at home), and got upset when the team she recommended reviewed it and suggested something else. So, she is no longer my neurologist and I'm in the process of finding a new one. I do have a second opinion set coming for my cardiologist to be safe, and a new Rheumatologist as my other one just insists its my weight that is an issue.

Jump to this post

@bigscraps
I am so glad you fired your neurologist! You do not deserve to be treated this way. You are the patient/customer seeking healthcare and not a negative/condescending attitude or disrespectful treatment. Your neurologist sounds like she shouldn’t be a provider (sounds miserable).

I hope you find a good, new neurologist. Check ratings/reviews online before choosing one. You may want to ask your cardiologist or primary doctor for any suggestions for good/reputable neurologists.

REPLY
dlydailyhope | @dlydailyhope | May 14 3:47pm
In reply to @bigscraps "They have not, although I did have to ask for a stress test which just happened..." + (show)
@bigscraps

They 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.

Jump to this post

@bigscraps
Did you have the Covid infection and get the shots? I wonder if long Covid is causing some of your symptoms.

REPLY
1 reply
khali | @khali | May 14 4:05pm
In reply to @julese "Has your cardiologist worked you up for Prinzmetal’s Variant Angine? https://www.ncbi.nlm.nih.gov/books/NBK430776/" + (show)
@julese

Has your cardiologist worked you up for Prinzmetal’s Variant Angine?
https://www.ncbi.nlm.nih.gov/books/NBK430776/

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i am so sorry you feel so bad with so many things happening. I have been having this "feeling" like my whole body is shaking and sometimes that tightness in my chest also but they said might be costochondritis, also i have headaches daily and sometimes nausea. I have had MRI, MRA also and so many tests that it is incredible also. But don't want to keep saying what is happening to me, i hope you can find a solution to your condition. Bye

REPLY
JacobG | @bigscraps | May 14 4:42pm
In reply to @dlydailyhope "@bigscraps Did you have the Covid infection and get the shots? I wonder if long Covid..." + (show)
@dlydailyhope

@bigscraps
Did you have the Covid infection and get the shots? I wonder if long Covid is causing some of your symptoms.

Jump to this post

I did have a covid infection, only once back in 2022, way before this all happened, though exposed a few times after, I never tested positive for it. And I have gotten the shots, normally Moderna.

It could be, but according to the stress test I had recently, I don't have post exertion fatigue and there are no issues with the heart itself.

The best guess I have (based on the PT I did yesterday) is something with the muscles now. I did a bunch of upper back, neck, and core exercises before I had a massive flare up again the same night. My forearms today feel like they are on fire again so... Idk.

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