Hello @romeo2020,

I have read your detailed posts and I can tell that you have put a lot of effort into finding a cause for your unique symptoms. I would begin to say, that while I'm not a medical professional, I have had a lot of health problems that have been difficult to diagnose and therefore treat. My history (though not my symptoms) was similar to yours in that I saw a lot of different doctors for what appeared to be a neurological disorder and everything appeared normal. Like you, I was also referred to a psychiatrist who said that I did not have any psychiatric problems but that I did present with a neurological disorder. (My neurologist then stated that a psychiatrist was not a neurologist and therefore was not qualified to make that kind of statement 😊).

Fast forward several years and many doctor appointments later and I was finally diagnosed with a rather atypical Parkinson's disorder. I don't look like a person who has had Parkinson's for over 20 years but when I started taking the meds for PD my symptoms abated quite nicely.

I'm not sure that you mentioned seeing an endocrinologist. These are doctors who know all of the body systems in a way that most physicians don't. They are excellent in helping with hard-to-diagnose problems. It is important to see a top-notch endocrinologist. Perhaps someone associated with a multi-disciplinary health system like Mayo Clinic (or at the very least) a university medical school. Is it possible for you to come to the U.S to be seen at Mayo Clinic? (They have three locations in Florida, Minnesota, and Arizona).

Just a few more questions: Any vestibular problems like balance? Any foot-dragging? Any vision problems? I see that you have not had an MRI of the spine. If so, please be aware that MS lesions can present on the spine, but not on the brain. Also, has any neurologist suggested a lumbar puncture?

All of this to say, don't give up on a diagnosis. Neurological problems are very, very difficult to diagnose. As I was told, over and over again, when I was going through this process, sometimes you don't get a diagnosis until things get much worse (not a very comforting thought I would admit). My diagnosis came when I began falling.

I look forward to hearing from you again. I urge you to keep researching and persisting. It will eventually pay dividends. Will you post again?

@romeo2020 Thank you for your response. I had asked your gender because anxiety type symptoms are also a symptom for some women with menopause, and I didn't want to go there not knowing if it applied, but I did like your answer about Shakespeare. A few years back, I was in England at Stratford upon Avon at a performance at the Shakespeare Theatre which was very interesting.

Your honey allergy could be related to what type of pollen the bees were using. I can eat honey in small doses, but it is too sweet and too much for teeth sensitivity and blood sugar levels, and I had tried some manuka honey having read about it having medical properties It caused an allergic type reaction after I ate some, so I gave it away. It smells at bit like Eucalyptus and I think it comes from specific plants in Australia.

For the GI bloating, you might try taking probiotics to make sure your guts are populated with the proper bacteria. Eating the wrong foods, and not eating foods that enhance the proper bacteria to multiply does set up a situation that creates gas, but that may get better in time and the vegetables may not have the same effect.

The surgery for the hiatal hernia would have created fascial scar tissue that is close to your diaphragm. If that gets affected by restrictions, it would force you to take shallower breaths and breathing that way does increase anxiety. There are discussions on Connect about breathing and anxiety. It can become a habit. I have had physical restrictions to my diaphragm movement and the expansion of my rib cage at times because of thoracic outlet syndrome. In working with my physical therapist and doing the myofascial release work, everything moves better and I get a deeper breath. I also have allergic asthma, and can have breathing issues when I get a buildup of phlegm in my airways and any swelling of airways on exposure to allergens. I can have my heart rate go up when the gunk is blocking oxygen exchange, so I do my allergy shots, use antihistamines and generic Mucinex to help expel the mucous by thinning it. This situation was also turning into repeating bacterial chest infections, and surprisingly, I had some dental issues with old root canals that were failing contributing to the amount of phlegm I had in my lungs as a baseline norm. My lung health improved a lot when the bad teeth were removed and I'm in the process of dental implants to replace them.

I was also asking about spine issues because it's possible to have a spine problem without knowing it. Some patients find out they have spinal cord compression and don't have pain, so they don't want to believe something could be wrong. I am a patient who had spinal cord compression with lots of weird pain because of an old whiplash injury that years later caused C5/C6 to collapse and grow bone spurs and all of it compressed my spinal cord. I didn't have any compression of the nerve roots, just in the central spinal canal. I did have muscles jumping spontaneously and that changed position with my body position and the position of my head and neck. The twisting when I turned my head changed where the cord compression happened and shifted that to another place in my body. That confused a lot of surgeons before I came to Mayo. In the waiting area at Mayo, I was talking with a patient who had ALS and I saw muscles in his arm jumping randomly all the time. The difference in my own spontaneous muscle contractions were that mine had a pattern where they occurred, and it was one muscle affected, not multiple random contractions and I could change the location with my body position. Spinal cord compression affects anything that is at that level of the spine and under it as that is specifically mapped in the body. The spinal cord is floating in spinal fluid and moves inside the canal with the body which can make the problems seem very random if the compression point where the cord is touched changes and it's a big bundle of everything. If you have spinal nerve root compression, that is very specific to that nerve and where it goes in the body, like to your arm, for example. There are a few different nerves that go to the lungs, and the one that affects the diaphragm is the phrenic nerve that emerges from the spine near the C3 level. If this nerve is compromised it can paralyze half the diaphragm because there is one on each side. That would be a situation that would force other muscles in the rib cage and neck to take over breathing and could produce a lot of anxiety. A spine injury near the C3 level could potentially affect breathing. It is worth requesting MRI imaging of your entire spine. You would need to either find a problem or rule it out.

If you can find an MFR therapist in Germany, you could try that to work on breathing and any physical issues. They can feel the tension and restrictions in your body with their hands. They would also need to know if you have spine issues before working on your neck, so the neurologist might be your best bet in getting this evaluated. The neurologist should also be looking for the other inflammatory problems that can cause the symptoms.

Lastly, try working on your anxiety with slow deep breathing to relaxing music. That is how music therapy works, and I did a lot of that before my spine surgery to calm my anxiety and I found I could lower my blood pressure by 15 points after a half hour of listening and deep breathing. The music was also a distraction so I didn't worry about the surgery so much. The music needs to be relaxing to you, not something that would stimulate and get the adrenaline going.

Ask questions of your doctors about how and why they think what they think, and ask things like if this was a spine problem, how would that affect me, and would my symptoms fit the pattern? You can also ask how a restriction to proper breathing could change things. Try
to connect the dots and understand how the body works. I think you are doing a good job questioning and advocating, and you need to be in front of the right doctor. A good physical therapist can help you a lot with this, and also as a source of recommendations to good doctors.