Struggling to find answers.

@erivas110818
Welcome to Mayo Connect!
I understand how difficult it must be to try to live a normal life with all these troubling symptoms- and so young!
Did anyone test you for Myasthenia Gravis , an autoimmune disease?
Here is a link to Mayo’s information on the illness.
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036

no they have not. i will look into it thank you!

Hi,
Firstly look at the side effects of your medication, then check Autonomic neuropathies. Have you tried an antihistamine to help the throat. It has helped me when the throat starts constricting from Dysautonomia or I have a mild anaphylactic reaction. It tends to relax my throat muscles for a short period, giving some relief.
Many things can cause various symptoms so similar it takes someone willing to spend the time to work through the issues with you. So keep pushing for answers until you are satisfied.
Cheers

I know how hard it is, like wading through tall weeds with no end in sight.

Lyme test?
ANA panel for autoimmune disorders? Scleroderma testing? Have you had an endoscopy?

There are dysautonomia clinics now .

Sometimes a functional medicine doctor, though often expensive, and help with a complex picture like this.

One of my kids was like this in their teens and improved and is doing really well (also on Lamictal). I hope the same for you.

I think either go to a Mayo Clinic (there are 3), talk to a speech therapist (which is what they do - swallowing problems, along with speech exercises). The speech therapist can have a swallowing test done where you eat little bites of a variety of foods and I think they do a CT during this testing. It helped figure out mt MS sons problem swallowing.

Have they determined which genetic chromosomes you have that has given this diagnoses? If you do have an abnormal rhythm with your heart then there should be more tests done on that also. They have tests like a bubble test, etc to see if there are any holes. These type of seizures affect motor skills just as strokes do. I do recommend like Barbara said for speech therapy which will help with the swallowing. Don’t stop till you get answers and if one doctor doesn’t have one keep going to another. Do lots of research. Only medical schools, journals and websites. If you find a doctor from any of those research areas it doesn’t hurt to try to reach out to them. Don’t give up. It took me over 20 years to get even half my answers and still looking for more for the rest of them. Oh and one thing that does help some is if you know your ancestry believe it or not and finding out what illnesses and what they passed away from helps. In my research I found that I had a few that had autoimmune diseases. There is controversy on if autoimmune is hereditary . If you think about autoimmune in general like diabetes, etc are autoimmune which can be hereditary. Not saying all are hereditary but could it be possible that someone in your tree has or had what you do? Love and prayers that you find the answers your looking for. ❤️🙏

@erivas110818
I am so sorry to hear all of what you are dealing with at such a young age.

It may be good to get an updated MRI of your brain and even your cervical spine due to some of your symptoms.

Your neurologist can also send you for a swallow test to see if there is a neurological reason for your swallowing issues. I had a similar problem (couldn’t swallow spit/liquids without choking). Mine ended up being due to cervical myelopathy where my spinal cord was being compressed/injured by my disc bulge/bone spurs plus they found a large thyroid nodule (~2.5 cm) on my right lobe. I had surgery for both and swallowing and many other symptoms improved (daily headaches, neck/shoulder pain, arm/hand/leg weakness, bladder control and walking improved). My tinnitus ringing buzzing in my ears improved some, too. I had speaking issues like slurring my words and having a hard time speaking at times like my tongue control improved. I think many of my symptoms were neurological.

Have you had a full iron and thyroid bloodwork panel done? Sometimes they do standard tests and don’t go further if they look “normal” but expanded panels will show a lot more. I had iron deficiency and thyroid autoantibodies (Hashimoto’s) but normal on standard tests but abnormal on expanded panels. Have they tested you with full panel for mononucleosis/Epstein Barr virus or have you had COVID/mRNA injections?

my ecg came back completely normal so no heart problems thank god. i have gotten an iron and thyroid panel but i believe they were just the run of the mill type, which came back normal. i did a barium swallow which came back completely normal. i will ask my nuerologist to do another mri and that may be helpful. ive also considered a lumbar puncture but i fear that would be too extreme and they would not order one for me. thank you for the input!

@erivas110818
Did you have EEG, angiography or myelography? You may want to get an ultrasound of your neck to see if anything is detected that would impact swallowing if the updated brain/cervical MRI doesn’t show anything compressed/impacting blood vessels, spinal cord or nerve roots.

Yes, check into side effects from medication. Also note, that even if there are side effects from medication, other problems may also be occurring at the same time.

best of luck.