Transition from Myopathic Changes to Diffuse Myopathy in Three Months
Subject: 20-year-old female, height 165 cm, weight 65 kg. No history of smoking or alcohol consumption; does not consume coffee. Current medications: Soliris, Mestinon. Hello, medical professionals! I’m dealing with autoimmune Myasthenia Gravis along with Cushing's syndrome associated with it, diagnosed in 2022. I've been prescribed Prednisolone since 2021, and as of 2023, my dosage was set at 10 mg. Fortunately, I've recently stopped the medication as of the end of May. For a bit of background, I underwent an electromyography (EMG) on April 14th of this year, which revealed myopathic changes in my proximal left arm. After discontinuing Prednisolone in late May, I also started treatment with Soliris. Just a few days ago, another EMG was performed, and it indicated diffuse myopathy affecting all the muscles on my left side. My healthcare providers are at a loss and are uncertain about the cause. One suggested that the Cushing's might be responsible, but I’m confused as to why myopathy appeared after ceasing Prednisolone. As of June, I'm experiencing weakness on my left side, a poor tolerance for exercise, and ptosis. My neurologist has noted that I’m currently on Soliris, which ideally should be making a difference, and has advised halting Mestinon. However, my situation has not aligned with our expectations; I am still suffering from left side weakness accompanied by diffuse myopathy in that area. I would greatly appreciate any insights or suggestions from fellow doctors. This situation is quite challenging for me, and I would be incredibly grateful for any assistance. Thank you sincerely for your support!
Answers (1)
6/20/2025, 12:10:46 PM
OpenHealth AI
I'm sorry to hear about the challenges you've been facing with your health. It sounds like you're dealing with some complex issues related to autoimmune conditions, and it's understandable to feel confused and concerned about your symptoms. Here's a concise overview of your situation and suggested next steps.
Summary of Key Points
- Current Symptoms: You have experienced a transition from myopathic changes in your proximal arm to diffuse myopathy after stopping Prednisolone, alongside weakness and ptosis.
- Medications and Treatment: You are currently on Soliris and have discontinued Mestinon as per your neurologist’s advice.
- Underlying Conditions: You are managing Myasthenia Gravis and Cushing's syndrome.
Explanation
The progression of symptoms you are experiencing post-Prednisolone may seem perplexing, especially since you anticipated improvement with Soliris, which targets the underlying processes in Myasthenia Gravis. Generally, corticosteroids like Prednisolone can sometimes lead to muscle weakness (steroid myopathy), and the transition you're observing could be linked to the discontinuation of this medication. Cushing's syndrome can also affect muscle health and fatigue due to hormonal imbalances.
It's essential to consider that stopping Prednisolone might have allowed the underlying effects of your conditions (like Myasthenia Gravis and potentially Cushing's) to become more apparent as your body adjusts. The diffuse myopathy could be a reflection of those underlying conditions rather than a direct effect of stopping the medication.
Next Steps
-
Symptom Monitoring: Keep a detailed log of your symptoms, noting the timing, severity, and any triggers for your weakness and ptosis. This information can help your healthcare team better understand the evolution of your condition.
-
Follow-Up with Healthcare Providers: Since your neurologist has noted a lack of expected improvement, it may be helpful to schedule a follow-up appointment to discuss the latest EMG results. Ask about the potential need for other diagnostic tests or a reevaluation of your current treatment plan, considering your symptoms and the impact of previous medications.
-
Enhanced Support and Rehabilitation: Consider engaging with a physical therapist who specializes in neurological conditions. They can guide you through exercises tailored to your capabilities, focusing on maintaining strength and improving tolerance for physical activity.
-
Dietary and Lifestyle Considerations: Given the challenges with muscle weakness, ensure you're consuming adequate protein and nutrients that support muscle health. A well-balanced diet is crucial during this time.
-
Emotional Support: Coping with chronic conditions can be overwhelming. Connecting with support groups for people with similar experiences or seeking counseling might help you manage any emotional stress arising from your current health status.
I hope this information helps you navigate this difficult time with more clarity and support. Please remember that it’s essential to maintain open communication with your healthcare team, as they are your best resource for personalized advice and adjustments to your treatment plan.
Related Questions
Experiencing Widespread Muscle Weakness
I’m a 36-year-old male and have recently been facing a troubling situation where the muscles throughout my body seem to be losing function—including my eyelids. The trouble began in May 2021 when I lifted a heavy garbage can with my right arm in a shrugging action. Following that, I felt a combination of pain and weakness concentrated in my right shoulder blade, as well as my shoulder and collarbone. Soon after, I noticed my shoulder began to pop and click. Afterward, I consulted with an orthopedic specialist who conducted x-rays on both of my shoulders. He informed me that everything appeared normal and dismissed the popping sounds as inconsequential. I also mentioned experiencing neck pain, but he indicated that addressing neck issues wasn’t his area of expertise. He diagnosed me with bilateral shoulder and neck discomfort and recommended physical therapy. The day after my appointment, I attempted to adjust my position in my desk chair by leaning on the left armrest, putting my forearm under the weight of my body. Suddenly, my shoulder jolted, and I felt a sharp weakness in my arm, accompanied by popping and clicking noises, similar to what happened with my right arm. I reached out to the orthopedic office to inform them about this incident, but the physician assistant who responded said the doctor would not see me again simply due to how I was sitting, and suggested I attend physical therapy first. She mentioned that if I continued to experience weakness, a neurologist might be necessary. Feeling concerned, I returned to my primary care physician for a follow-up appointment and recounted my experience. He didn’t appear worried, and my blood tests returned normal results. During the summer of 2021, I began physical therapy where the therapist diagnosed me with strains in my trapezius and rhomboid muscles. The subsequent therapy sessions consisted of painful exercises and stretches, yet I observed little to no improvement in terms of strength or stability. Activities like using the arm bike and weight machine were excruciating, and I frequently inquired whether my symptoms could be attributed to a tear or nerve damage, but the therapist insisted that was not the case and dismissed my concerns. After my tenth session, I decided it was best not to return. In April 2022, I visited a neurologist. I struggled to lift myself onto the examination table and needed assistance from a step stool. He didn't suspect any neurological issues when I asked him about an EMG or other assessments, he declined to proceed with those tests. Disheartened by these experiences, I chose not to pursue further medical consultations. Fast forward to April 9, 2025, I misstepped while descending some stairs, causing my right heel to catch, and I landed hard with my toes pointed. I had no visible signs of injury such as swelling or bruising, but soon after, I began to experience persistent pain and weakness, especially in my toes and the arch of my foot. By April 13, I instinctively elevated the toes on my left foot, and to my dismay, the same pain and weakness emerged, again without any visible signs like bruising. Since then, both feet have lacked strength, and my big toes feel unusually floppy. In July 2025, I had a troubling experience after having my hair washed at a salon. I held my neck in an awkward position for the duration, which resulted in a burning sensation. Regrettably, I didn’t express my discomfort, fearing a scene. Following this, I noticed significant weakness in the muscles at the front of my neck, under my chin, which gave the appearance of a receding chin. Additionally, my facial muscles, particularly in my cheeks, felt weak and could easily be pressed in with minimal resistance. In January 2026, I bought a new game controller for my laptop, having not played video games for a long time. Initially, it was manageable, but soon after, my hands and forearms began to feel uncomfortable and painful. This discomfort escalated significantly to where I had to discontinue use completely; my hands felt drained of energy and experienced achiness, tingling, and numbness. Then, on February 3, 2026, while seated and using my laptop, I noticed a peculiar sensation when moving my eyes. My eyelid muscles felt weak, and one of my eyelids began twitching. I found it increasingly difficult to open my eyes as widely as I used to. I plan to see a primary care physician once more, but I’m uncertain how to communicate all of this effectively to receive proper care. My circumstances have reached a point where my parents must assist me with everyday tasks, including driving, opening doors, and even lifting light objects. My ability to raise my arms above my head has become severely limited as well.
Liver Mass Assessment
Patient Profile: - Age: 61 years - Height: 5'9" - Weight: 240 lbs - Gender: Female - Lifestyle: Non-drinker, non-smoker, no illicit drugs Current Medications: - Atenolol 10mg (morning and evening) - Rosuvastatin 40mg (evening) - Duloxetine 60mg (evening) - Spironolactone 25mg (recently added) - Jardiance 10mg (recently added) Medical History: The patient has a notable history of multiple pheochromocytomas and paragangliomas, having undergone surgery on eight occasions. According to scans performed three years ago, two subcentimeter retroperitoneal masses were identified, suggestive of potential paraganglioma. Additionally, she suffers from secondary polycythemia and possesses the PHD1 gene mutation. Previously, she received treatment at a prominent research institution in the United States. However, her endocrinologist has since retired and returned to their home country. Current Condition: At present, she is mostly asymptomatic. However, in January 2026, she experienced a concerning event requiring an ambulance transport to a local emergency room, where her oxygen levels registered at 88-89%. This incident was unsettling, given her extensive medical history. The emergency physician initially diagnosed her with congestive heart failure (CHF), but upon discharge, her family medicine doctor suggested pneumonia. During her hospital stay, a cardiologist—who has never managed a pheochromocytoma patient—recommended a chemical stress test. A CT scan performed on her chest revealed a 3.2 x 2.5 cm mass located in the left lobe of her liver. Her blood tests typically show elevated levels related to pheochromocytomas; however, the laboratory does not conduct resting catecholamine testing, which leads to unreliable results, despite them being consistent over time. Furthermore, she has received care at major hospitals in Minnesota and both leading hospitals in Cleveland, Ohio. Unfortunately, when she required her last surgery, the tumor board declined her case, citing an unfavorable risk-benefit ratio. This leaves her without a specialist in pheochromocytomas. Request for Guidance: The patient is seeking advice or recommendations for her current health situation and management of her conditions.
Concerns Regarding Neurological Health
Hello! I received an epilepsy diagnosis back in 2008, and throughout this time, various MRI and CT imaging studies have indicated issues related to cerebral function and encephalopathy. Despite consulting multiple neurologists over the years, I’ve found that none of them appear worried about the encephalopathy aspect. Shouldn’t this be something to take more seriously? My cognitive abilities, including memory and vision, have noticeably deteriorated as time has passed. I’m feeling lost since my previous neurologists have not acknowledged my concerns adequately. If anyone could offer guidance or suggest resources, I would greatly appreciate it. In addition to epilepsy, my other medical conditions include Narcolepsy, Lynch Syndrome, Migraines, a mutation associated with HLA-B27, and Hashimoto's disease, along with others that escape me for the moment. Currently, I’m on a medication regimen that includes Lamictal, Xcopri, Hydroxyzine, Solifenacin, Zoloft, Wellbutrin, Sunosi, Aimovig, and Famotidine.
Navigating the Complexity of Symptoms: Is It PCOS or Something Else?
While I’m not an expert in self-diagnosis, I find myself puzzled by an array of symptoms that overlap, making it challenging to pinpoint what might be affecting my health. Let's break down my situation: - Age: 25 years, Gender: Female, Height: 5’1”, Weight: 125 lbs. - The last menstruation occurred in June 2024. Prior to this, my menstrual cycle was remarkably consistent since I was around 12 years old, typically without severe premenstrual symptoms, heavy flow, or irregularities. - Various blood tests over time reveal that most hormone levels fall within normal ranges, with the exception of estradiol (persistently between 10-20) and progesterone (remaining below 0.2). - A couple of results raised some concerns for me personally, even if my doctors weren’t alarmed: my morning cortisol was measured at 13.4 and in the afternoon at 9.49. One test indicated a TSH level of 2.35, which increased to 3.93 months later. My fasting glucose consistently hovers around 80, whereas random glucose levels were recorded at 68, and postprandial glucose was 65. - An MRI indicated a "deviation of the pituitary stalk, potentially linked to a small pituitary adenoma." - An ultrasound revealed "multiple oval, well-defined, anechoic images with posterior acoustic enhancement, measuring a few millimeters, located around the edges of the stroma." - The symptoms I am experiencing include disrupted sleep (frequent awakenings, particularly around 3 AM, making it hard to resume sleep), lack of energy, difficulty in weight management, persistent hunger, heightened anxiety, and hair thinning. - Birth control (drospirenone and ethinyl estradiol) exacerbated nearly all of my symptoms, leading me to discontinue use after two weeks despite experiencing a withdrawal bleed. - My lifestyle is generally healthy; I consume a lot of whole foods, engage in weightlifting, and run regularly. Given that I’ve received a diagnosis of PCOS, I’m wondering if this assessment seems accurate. What options do I have moving forward, especially since the contraceptive method didn’t provide relief and I appear to exhibit signs of additional complications such as thyroid issues or cortisol dysregulation?
Understanding My Experience with Overdose-Related Symptoms and Behavior
25 years old, 165 cm tall, and weighing 70 kg. Summary: After sharing a complaint about my interactions with paramedics, I've taken a moment to reflect on their feedback and review the situation through the footage. I recognize that my conduct during those moments was inappropriate, and I am filled with remorse. Subsequently, I have retracted my complaint and am now seeking mental health support. I desire to clarify certain aspects since my medical records do not completely align with what I went through. Below, I detail my symptoms. Yesterday, I made a post on the AskDoctors forum, hoping for insights regarding my condition. The advice I received prompted a self-realization that had evaded me until now. Initially, I was outlining a grievance against paramedics who doubted the legitimacy of my seizures and accused me of feigning the experience. My response was not only disproportionate but also hostile—I yelled, wept, and labeled them as heartless. Such reactions were completely unwarranted and unjustifiable. Ultimately, I was physically stable, with vital signs indicating no critical issues; there were only temporary fluctuations in my blood work, which shouldn’t have raised alarms. I feel profound regret over my conduct during that encounter. Watching the footage incites feelings of self-disgust. I’ve decided to withdraw my complaints and am committed to mental health resources. I opted to delete my previous post since it contained sensitive information about my professional and educational background; I was worried it might provoke disciplinary action from my university, which I cherish as my career gives my life meaning. I admit to feeling cowardly in this respect. The initial reason for my inquiry was a desperate need for clarity about the symptoms I experienced, as my discharge documentation omits much of what transpired in the hospital and the subsequent three days. I greatly value the input I’ve received and hope to gather more perspectives. I fully acknowledge my wrongdoings and find my previous behavior abhorrent. I understand how challenging it is for emergency personnel to fulfill their duties when faced with such a situation. I’ve discussed with family and friends the importance of exercising discretion when contacting emergency services and ensuring it’s truly necessary. I regret taking up valuable resources that could have been reserved for individuals in genuine need of urgent care. My actions were shameful, not just for me but also for my colleagues who work in emergency services; I genuinely believe the clinicians should have distanced themselves from my case entirely. I've canceled my appointment with the neurologist, but I would genuinely appreciate insights from others on this subject. Could excessive doses of sertraline, propranolol, promethazine, and alcohol induce psychological seizures? Is it possible for these seizures to recur? Were my hallucinations indicative of some kind of psychosis? During the episodes, I saw hair-like formations everywhere and everything seemed to emit a blue glow. In the hospital, I consistently perceived doctors passing by. At home, the LED lights appeared to move, and I often caught glimpses of faces in my peripheral vision. There were also auditory experiences, such as hearing things that weren’t present, as confirmed by my friend. Initially at home, I was unaware I was having seizures, although I did hear police officers numbering them and acknowledging them as such. I had three episodes where I was placed in the recovery position. In my medical notes, I mentioned experiencing ten seizures throughout the night, though I can’t verify this. I was seemingly in a continuous cycle of them. I recall at least once drooling uncontrollably and my hands looked peculiar; on one occasion, I screamed when I regained consciousness due to an awkward hand position. I also experienced significant neck pain and discomfort in my feet. I know I fell twice while hospitalized; fortunately, my mother was there to catch me each time, so I avoided serious injury. I was never alone in the facility. Everything seemed to settle down after approximately three days, right around my third visit. I recall a persistent ache at the nape of my neck that left me feeling drowsy, often drifting in and out of consciousness and repeatedly asking for the time. It was a never-ending ordeal, and although I had little appetite, I did not vomit at all. Reflecting on this whole episode leaves me feeling as if it were entirely fabricated. I struggle to articulate it. Conversations about care options unfolded around me, yet I grasped little of what was being discussed. I often replied with “yes” or sought validation from my mother. I remember thinking it was remarkable that my mum had glasses with water in them; I even imagined one of my cats perched on my aunt’s shoulder. Overall, it felt akin to a terrifying drug experience. I do have videos capturing my behavior at home, though I cannot recall anything from the hospital. I often awakened with either my mother, aunt, or medical staff restraining me. Could it all stem from psychological causes? Is it possible that the medications led to a psychotic episode where I convinced myself I was experiencing seizures and on the brink of death? After they subsided, I felt like an automaton for weeks, plagued by involuntary muscle jerks—primarily in my legs and neck. I sincerely hope these symptoms do not return. I intend to avoid emergency care unless it’s absolutely necessary. I seek nothing more than to comprehend what transpired. Thank you for your thoughts.