Myasthenia Gravis or other symptoms

[gabesz]

I may be affected by Myasthenia Gravis (MG) due to difficulties with swallowing, and recently I can only swallow liquids. I also experience muscle weakness, particularly in my legs. Besides living with autism, I have been diagnosed with ADHD, Learning Disabilities (LD), Immune Thrombocytopenic Purpura (ITP), and Sjögren's Syndrome. An MRI was negative, but previous assessments confirmed right-sided temporal atrophy. I am seeking advice or experiences related to these symptoms, as I am unable to reach a neurologist and can only access private care in hospitals, where doctors do not refer me for further tests. A private swallowing X-ray showed no abnormalities.

Thank you! 🥰

[Lady4]

Is the muscle weakness intermittent? I ask because my son experiences this, usually alongside some other symptom, his body is trying hard to regulate. I think of it like when we have a virus, our bodies have to fight it and that makes us very lethargic.

I have learn't that the key is identifying changes in your body, are you hot/cold, is your breathing getting faster and then using strategies to address. Ie a cool towel, breathing exercises, a weighted blanket.

My son is also suspected Autism and we on are on the pathway and I also had private OT assessments (sensory and emotional).

As suspected low interoception was included in the findings. My OT will be sharing some resources with me for this and this will be discussed in an Education Class I attend.

I will post any useful links and information on a separate feed when I receive them.

Hope this helps a little.

[gabesz in reply to Lady4]

Thank you for sharing your experience! I completely agree that being aware of body signals and using strategies like temperature regulation, breathing exercises, and weighted blankets can be really helpful.

I also relate to the challenges of low interoception, and it’s interesting that your OT confirmed this in the assessment. It’s great that you have access to resources and an education class to explore this further. I’d love to hear about any useful insights you come across!

I also have a question—do you know if right temporal atrophy can cause any neurological differences? I recently took a test (conducted by a chiropractor), and the results indicated a severe neurological condition. However, apart from this abnormality, no other issues have been found in my medical tests. Can such a test be taken as reliable, or should I seek further investigation?

[Lady4 in reply to gabesz]

From what I have just researched, medical journeys, right temporal atrophy is associated with Dementia and Alzheimers, do you have any memory issues?, you seem quite young.

In a paper I just read, FND has been diagnosed as Myasthenia Gravis in error, so don't summise, get a positive "rule in" diagnosis. The article also went on to say especially is diseases like Sjögren's.

So if a clinician has mentioned MG in passing to lead you to the assumption, its questionnable. Can share article if you want but self-diagnosis is not advisable and can cause added anxiety.

[gabesz]

Thank you for looking into this and for sharing your insights! Yes, I do have memory issues, which is one of the reasons I want to understand more about the implications of right temporal atrophy. I am aware that it's often linked to dementia and Alzheimer's, but since I am relatively young and no other abnormalities have been found in my tests, I am still trying to piece everything together.

Regarding Myasthenia Gravis (MG), there was actually a doctor who suspected it at some point, which is why the possibility has been on my mind. However, no definitive diagnosis was made, and I fully agree that a proper ‘rule-in’ diagnosis is crucial rather than assuming. I would definitely be interested in reading the article you mentioned, as it might help me understand the nuances better.

I really appreciate your input and the time you took to look into this!"

[Panther5000]

Do you have ear nose and throat specialists?

[gabesz]

In Hungary, most medical examinations require private healthcare services despite having public health insurance. I have undergone an ENT (ear, nose, and throat) examination, where, beyond suspected symptoms, a moderate Candida overgrowth was detected. I was prescribed medication, but it did not lead to any improvement.

One of my most bothersome symptoms is the persistent yellow discoloration of my tongue, which has not improved despite reducing sugar intake (although I am unable to follow a strict sugar-free diet). This issue likely started after a previous antibiotic treatment (possibly Zinnat), which I had to take due to a severe upper respiratory infection that coincided with temporary leg paralysis. Since then, my tongue has remained yellow.

Additionally, I have noticed occasional, split-second breathing interruptions, though they are very brief (milliseconds). Because of these symptoms, I have considered the possibility of Parkinson’s disease, though it has not been diagnosed. There seems to be a reluctance to investigate this further.

There is a family history of tremors: both my grandmother and her sibling had tremors, although they were never officially diagnosed with Parkinson’s disease. They both passed away due to heart disease.

ENT findings were otherwise negative. While I previously had reflux symptoms, these have been completely resolved by restoring gut bacteria balance. Helicobacter pylori is no longer present.