Does this sound neurological? Help

Posted by brynna20 @brynna20, Jul 28, 2019

Hello,
I am a Female in my 20’s, 5’6, 115lbs.
Over the past 3.5 years I have been experiencing debilitating symptoms and have been struggling to find anyone for help. I am wondering if anyone has had similar experience and issues and may be able to direct me on how I can better handle it.

My first symptoms started around 4-5 years ago and it was very mild and infrequent. I would describe it has a deep burning to stabbing pain in my calves and arms. Generally it would only occur in one place at a time and could last 5 minutes to 2 days. Along with the pain whichever limb was affected also would just feel weak.

The next symptom was chest pain around my left breast that feels stab like when it occurs.

My next symptom began in around 3.5 years ago. I would describe it as air hunger, constantly yawning and sighing because it feels like I am not getting enough air. The first few months it was something that would come in the afternoon and be gone the next morning but it quickly turned into lasting from the moment I woke up to the moment I go to sleep. Generally it is constant on occasion it gets worse (no identifiable triggers) but it has never gone away or gotten better.

Around this time I also began to become increasingly sensitive to heat. I have become almost unable to go outside and do activities such as walking or going to the beach because I will get so hot and lightheaded.

I have been experiencing periodic episodes of dizziness and lightheadedness that can last a day or for weeks. Sometimes it can get to the point where I can do nothing but lay down because everything is spinning so bad.

My periods have become irregular and light.

I’ve had a clearing of throat type cough for about two years that had noticeably gotten worse over the past two months.

I once was extremely active but now I am constantly fatigued. Even standing up for five minutes makes me feel exhausted and like I need to lie down.

Recently I have also been suffering from upper to mid back pain constantly and it makes me feel like I can’t stand occasionally and makes my feeling of not being able to breathe properly worse.

The shooting and burning pains in my arms and calves and chest have gotten much worse in the past 3 months to where they are almost an everyday thing now.

In the past month I have noticed my vision keeps going in and out and getting blurry, whether I am focusing on things or not. My near sighted vision has also gotten extreme blurry.

I’ve tried going to doctors a few times over the years and no one has been much of help. I’ve had a few tests done:
CBC, T-SH, metabolic panel, hemoglobin a1c-normal
EKG -normal
Ultrasound of my heart (I have minor MVP)
I had a chest X-ray done and they told me it was normal.

I actually just went to a general doctor and she told me she could feel muscle spasms in my back and recommend heat compress. I have been doing it for about a week with no symptoms alleviated.

In regards to stress and anxiety. I have never been diagnosed and I consider myself a very calm person who doesn’t get worked up easy. I don’t particularly stress out about many things either. Other than these past couple months after the symptoms have gotten very bad and I can find no relief.

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

Ethan McConkey, Moderator | @ethanmcconkey | Jul 28, 2019

Hi @brynna20 that must be so overwhelming to have all these symptoms and find no answers.

I would like to introduce you to fellow Connect members @jenniferhunter, @johnbishop, and @artscaping, may be able to provide you support as you search for answers.

Back to you @brynna20, you mentioned that your anxiety has gotten worse over the past few months due to your increasing symptoms with no relief. How are you feeling today? Have you sought out help for the anxiety you are experiencing?

John, Volunteer Mentor | @johnbishop | Jul 29, 2019

Hi @brynna20, I would like to add my welcome to Connect along with @ethanmcconkey. There is another discussion that sounds similar to your symptoms that you may want to join.

> Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
-- https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

There is a TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis. Have you seen it?
What happens when you have a disease doctors can’t diagnose
-- https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Lisa Lucier | @lisalucier | Aug 5, 2019

Hi, @brynna20 - just reading your story now and wondering how you are doing?

Jennifer, Volunteer Mentor | @jenniferhunter | Aug 5, 2019

@brynna20 From my experience as a patient, burning and stabbing sharp pains can be neurological. The cause of something like that can be a nerve compression somewhere in the body caused by tight or misaligned tissue. There are some compressions that happen because of pelvic alignment or shoulder and neck problems that can cause arm or leg pain. https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

I have had leg pains for a few reasons, and one is when my pelvis is twisted by a muscle spasm. Realigning with my physical therapist fixes this. Another reason I have had leg pain is from compression of my spinal cord in my neck from bones spurs and a collapsed disc. I had a whiplash injury 20 years earlier and with aging, I developed cervical stenosis and had surgery for that at Mayo. Spinal cord compression in the neck can cause pain anywhere in the body. That was my experience, and I had pain everywhere, and my spine surgery fixed it. I also have thoracic outlet syndrome which causes nerve compression in the shoulder and neck, and I have had some arm pains with that, and it has affected my breathing by making my chest wall tight, and I've had chest muscle spasms with that causing a stabbing pain in my chest. Thoracic outlet syndrome can also cause diminished circulation by cutting off blood supply from pressure particularly when you turn your head and it can cause dizziness or light headedness. I have been working on it with physical therapy. I also had dizziness caused by my spine problem before my surgery because of muscle spasms that were pulling the vertebrae out of alignment. You've mentioned muscle spasms in your back. Here is a technical link about vestibular impairment. https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/

The way you describe your stabbing pain symptoms coming on and increasing for several years does make it sound like a physical problem of body alignment. If you have had any injuries, it can contribute to a problem like that. A spine problem from an injury, something congenital, or even growth of a mass near the spine could cause similar issues. A problem anywhere along the nerve path from the spine to the arm or leg can cause nerve pain, and a neurologist would be a doctor who could try to figure out the source of that pain and what part of the body is causing it. They also can order other tests to rule things out that can cause similar symptoms. Do your pain symptoms change with different body positions or different head positions? Does turning your head make this worse? Here is a study that describes issues with circulation caused by a spine problem and it also mentions dizziness and visions changes. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2591209/pdf/yjbm00200-0090.pdf

Here are some other links about TOS which is often missed by doctors.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

My physical therapist does myofascial release in addition to traditional therapy for my TOS. MFR helps open up tight tissue and here is our discussion with lots of information. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The other issues you mentioned about heat intolerance and irregular cycles sound like things that happen as a woman gets close to menopause which shouldn't happen to someone in their 20's, but the question you should ask is what other medical conditions can make changes similar to this? Blood tests can determine what your hormone levels are and if they are too low. Perhaps an endocrinologist could help.

My suggestion is to consult a neurologist who specializes in spine conditions as a start. They may also be able to diagnose TOS, and if you have TOS (which can be from posture), it would be best to consult doctors at an institution that treats and understands TOS in addition to having a good spine center, like Mayo. According to a neurologist I saw before I came to Mayo, TOS is glossed over in medical school and talked about for only about a day.

Physical therapy can help with some dizziness and vertigo, but there can be many causes. There may be several things that are issues for you, and sometimes you just have to start with one piece of it and figure that out first. A neurologist might also order tests for Lyme disease because it can cause nerve pain, and as a note, the Western Blot test can often miss Lyme disease. The tests for Lyme from Igenex are said to be more accurate and the ILADS group of doctors are the ones who specialize in treatment of Lyme. https://igenex.com/
I know this is a lot of information, but diagnosis sometimes happens by ruling out other causes of the symptoms.