Help needed! What could my symptoms possibly mean?!

your symptom list is longer than mine. When myasthenia gravis first presented itself with me, I had twitching and heart palpitations too ( from your list). It took 2 years to figure out it was MG. Mayo determimed it was MG, but my symptoms worsened over 2 years, I have MuSK MG, my antibody test finally came back positive. Good luck to you

How is the antibody test performed and who did it? A neurologist?

yes, I saw a Mayo neurologist. The antibody test is a blood draw. MG is an autoimmune disease.

@romeo2020 Welcome to Connect. I presume your EEG was a sleep study of your brain waves? What did they image with an MRI? Did they do brain and full spine imaging? Did they check for inflammatory diseases that affect nerves and muscles like MS, etc? Am I correct in assuming that you are a guy with a user name like Romeo? So many of your symptoms could be anxiety related, or even something like Lyme disease or an exposure to something toxic like toxic black mold. With that in mind, have there been any roof or water leaks in your home? If you leave home and stay at a hotel, do you have the same symptoms? Have you considered gluten issues? That can produce gas and bloating and it's easy to test. You can also try for a week to avoid all grains, bread, pasta, etc and see if that changes anything. Have you had surgeries? Do you have any surgical implants or foreign materials in your body? I ask that because surgery creates scar tissue which can entrap nerves. Was your thyroid function normal? Too high levels of thyroid hormones cause symptoms very much like anxiety. Have there been traumatic events in your life that could be triggering PTSD with a thought or memory? You may want to write down your symptoms and what you were thinking about at the time it happened in case that will reveal any clues. If mainstream medicine doesn't find answers, you may want to consider an environmental allergy medicine physician or functional medicine. there is a provider search at https://www.aaemonline.org/find.php . Personally, my environmental medicine doctor has helped me a lot. You will also find educational information at the practice that pioneered this field of medicine at https://www.ehcd.com/. It is good to be asking questions like this of your doctors instead of waiting for them to think of something. You may get an explanation, or a response that they could look at your suggestion.

One thing I could suggest even if they don't know what causes the physical problems is to try myofascial release with a physical therapist. I have done this for several years and it removes the tightness and fascial restrictions in the muscles and allows the body to get back into better alignment. It also allows the tissues to be re-hydrated and release waste products that are stored there. It may be able to address the GI issues if your intestines have adhesions or restrictions in their movements. Have you done the normal GI screenings like a colonoscopy? If anything here rings some bells, discuss that with your neurologist.
Here is our MFR discussion. There is a provider search at http://mfrtherapists.com/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Thank you for your detailed post. I´ll answer your question one by one.

1. EEG: they put the wires on my head and just asked me to keep my eyes shut for five minutes or so. Despite the fact that I experienced three tremors during it, they said that they found nothing.

2. MRI: was done of my head, neck and chest, not the spine. inflammatory diseases that affect nerves and muscles like MS were not check, as I was given a thumbs up by the neurologist after the EEG and MRI scans.

3. No, no water leakage or anything like that. Also, my symptoms stay even if I spend days away from home. However, here´s something IMPORTANT: I consumed a spoon of honey and had a massive allergic reaction to it (mild breathing issue, but felt as if my facial skin was swollen, and had minor vision problems, but strong hearing issues). I was prescribed a short steroids therapy. All my symptoms relented after two weeks, but four weeks after that allergy attack, I developed the symptoms referred to in my opening post!

Could the honey be the cause?

4. Gluten issues have been ruled out. Funnily, my gastrointestinal issues get worse with vegetable consumption, as it causes an increase of too much intestinal activity, and hence bloating.

5. Surgeries: one in 2005 on my fractured arm, one on abdomen in 2010 due to hiatal hernia (all well with that now as revealed by a CT scan, so that´s not the cause here). So, both happened ages ago.

6. I chose Romeo as my username because I´m an admirer of Shakespeare. Haha! As for anxiety, I was personally the first person to see it that way, but three mental health specialists have completely denied that by now, especially given how the medicines that they give me worsen my issues. Also, anxiety should at least be calmed by Benzodiazepines, no? Here, even they´re ineffective. I don´t deny it, but I don´t see any success that way either.

7. PTSD or incident etc. in life: well, nothing beyond the honey allergy attack story shared above!

Also, thank you for your other suggestions. Really valued. I´m based in Germany, by the way.

Regards.

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?

Thank you so much for taking the interest in my rather mysterious case. I´ll again type my reply on a point to point basis so that it´s easy to keep a track of things.

Firstly, incredibly sad and yet inspiring at a personal level to know that you too have had a long struggle behind yourself.

1. How was your atypical Parkinson´s disorder diagnosed? Was it only based on yourself falling? Also, if I may know, what were your symptoms?

2. I´ve been to endocrinologists twice, they performed their tests, and found nothing. It was at the University Clinic of Frankfurt. Also, coming over to the US isn´t possible for me, right now at least.

3. "vestibular problems like balance? Any foot-dragging? Any vision problems?"? Only vision problems from these. Blurred vision is a symptom that comes and goes, but severe sensitivity to light is one. Yellow light feels so severe as if it´s reddish, and white light feels as if it´s yellowish - I know it´s weird!

4. I´ll push for an MRI of the spine. Lumbar puncture, no, that hasn´t been done either. The issue here is, the neurologists that I´ve seen so far have shown little interest, due to their pre-conceived idea that it´s a straight forward mental health issue only.

@romeo2020- many neurological type symptoms can be related to vitamin deficiencies. B Vitamins, Magnesium, Vitamin D. I would see a Functional Medicine Doctor, considering you have gone the path of traditional medicine.
Traditional Medicine, at least Western Medicine is trained in a small scope and treats people on an algorithm basis, without looking at total lifestyle.
I would start with your overall lifestyle first. Sleep, Nutrition, Exercise, Community and what you do for fun.
It sounds simple, but these are the components to total overall health. Even if you present to a physiologist if they are the type that are just going into your history and getting you to talk about things, they are not equip to mean sure your overall health. The things you describe, present that you are a sensitive person. There is nothing wrong with that. When you are sensitive to things, it’s easy to notice what comes up in the body. Some of these “symptoms” or messages from the body could be trying to get you to change things in your life/lifestyle that you may not even know are contributing. I wouldn’t start allowing other people do give you all these diagnosis’s and send you down rabbit holes. That can make your symptoms worse. Often when things start out of the blue, it is part of a bigger picture of patterns that we were not aware we had going on. Look at each and every area from a total body approach. It all plays a part. Hope this helps.

@romeo2020-I forgot to add into the previous post...often times it’s best to start with the simple approaches to the things that can calm and help any nervous system. What is very common in the medical system is if you are “worried” (nervous) about one thing, the medical community will run all these big tests, because they have to and that’s what they bill insurance for. Once you start all of these tests, this can start keying your nervous system up even more. You then have all of these experiences with multiple doctors and tests, and you are sent home thinking “but what if they missed something”. This causes a whole new cycle of stress/worrying which does nothing for said symptoms. Sitting with the thoughts of what next test I can have done. Often times we don’t know why something happens out of no where. Our bodies our loud and complex. When we feel something for the first time, we often attribute that to being wrong. Which can cause “health anxiety”. Sometimes overthinking is not the most helpful in these situations, but rather working with someone first, to rebalance the body and nervous system and then go from there.

@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.