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
Concern Regarding Persistent Tongue Bump with White Coating
I am a 24-year-old male, standing at 190 cm tall and weighing 109 kg. For the past five weeks, I've experienced a peculiar issue on my tongue. Specifically, there's a noticeable bump on the right side near the tip, which I believe may have been developing over time, although I'm not entirely sure about that timeline. Recently, I've been troubled by an unusual sensation, including dryness, an odd taste, and a slight decrease in my sense of taste. Additionally, I've observed a white coating that is more pronounced on the aforementioned side of my tongue. The bump in question: - Does not cause any pain. - May have increased slightly in size over the weeks, though I'm uncertain. - Appears smooth with a pink surface, free of bleeding or ulceration. Given that this issue has persisted for over a month, I am feeling quite anxious and am concerned that it may indicate a serious problem. I have no significant medical history, but I confess that my dental hygiene has not been up to par, as I haven’t been brushing regularly. At this moment, I’m also under medication for H. pylori, known as Pylera, but this tongue concern predates my treatment. I am a non-smoker and am reaching out for any insights on this condition. Has anyone experienced something similar? Could this be a sign of irritation, infection, or something benign? I really appreciate any guidance you could provide. Thank you!
Experiencing Clear Fluid from Ear with No Discomfort: Should I Wait for My Appointment?
I am a healthy 57-year-old female, weighing 120 pounds and standing 5 feet 5 inches tall. My daily medications include 100 mg of Losartan for effectively managed high blood pressure, 200 mg of Lyrica taken twice daily for post-herpetic neuralgia, 100 mg of Synthroid following treatment for thyroid cancer, and a combination hormone replacement therapy patch. Additionally, I take Zyrtec and Flonase every day to combat allergies. Since October, I have been dealing with persistent tinnitus in my right ear, accompanied by some pressure and a muffled sensation. Recently, I've noticed that when I speak, it feels akin to the sensation I experience when my ears clear during a flight after chewing gum—my voice sounds amplified in my head. I've scheduled an appointment with a physician's assistant in an ear, nose, and throat (ENT) office for the end of March due to my worries about the tinnitus and any potential hearing impairment. Yesterday, I noticed that my ear emitted a clear fluid. Thankfully, there was no associated pain. The fluid was somewhat thicker than water, completely odorless—unlike the unpleasant discharge I recall from my daughter's ear infections—and there was no sign of blood. Could this indicate a perforated eardrum? I suspect this might be the case, but can this occur without an underlying infection? Should I seek attention sooner than my appointment in March? I would prefer to avoid urgent care during flu season; however, if this situation is serious, I am prepared to take precautions and visit.
Understanding the Increased Pain in My Foot While Reclining
At 30 years old, I am nearing the five-week mark since undergoing surgery on my metatarsals. I've encountered a troubling issue: I can’t seem to find comfort when lying down, whether it’s with my foot raised or lying flat. My pain level escalates to a severe 10 out of 10, unless my foot is making contact with the floor or I dangle my leg off the side of the bed so that my toes touch the ground. Is this situation typical for someone in my circumstances? Are there any suggestions that might assist me in getting a better night's sleep?
Understanding Possible Seizure Triggers and Recurrence Risks
Health Background: I am a 21-year-old female, standing at 169 cm and weighing 65 kg. Over the past three years, I have been using oral contraceptives. As of this morning, I started taking 25 mcg of levothyroxine along with a weekly vitamin D supplement of 0.266 mg. Recently, I was diagnosed with hypothyroidism and found to have a vitamin D deficiency that I suspect has existed for the last three years. I do not consume alcohol or smoke, and I can confirm I am not pregnant. Two years ago, I experienced a mild concussion. I currently reside in Spain. A couple of months back, in mid-December, I blacked out twice. The second occurrence took place while I was at the doctor’s office after seeking urgent medical care for the initial incident. Following the second episode, I underwent a CT scan and an EKG, both of which returned normal results. Further tests, as directed by my physician, revealed a critical vitamin D deficiency and hypothyroidism; however, he expressed doubt that either of these conditions led to my loss of consciousness. I was then referred to a neurologist, and I am presently awaiting an appointment. Although the waiting period is lengthy, my doctor indicated that I should receive priority for scheduling, although the exact timeframe remains uncertain. The referral document summarized my events, labeling the second episode (which the physician witnessed) as a potential seizure devoid of tonic-clonic movements—a revelation that took me by surprise. After regaining consciousness, I felt extremely disoriented and terrified, struggling to process what was happening. I have no prior history of seizures, epilepsy, or any related conditions, and there is no known family history of these issues. If this indeed was a seizure, what might have triggered it? Additionally, what is the likelihood of experiencing another one? Since that time, I have not had any further incidents, but I have experienced moments where I felt a sense of impending doom, which I managed to overcome. I intend to wait for the neurologist's evaluation, but the uncertainty surrounding a possible neurological condition is quite distressing. Thank you for any insight you can provide!
Understanding EEG Results for My 22-Month-Old Son: Insights Needed
Could someone help clarify this for me? My son, who is just 22 months old, hasn’t started walking yet, becomes tired easily, and has been experiencing behavioral outbursts. He had a febrile seizure in February 2025, followed by another unexplained seizure in April 2025, which led us to consult a neurologist. Since he was 3 months old, he has been receiving therapy from a physical therapist for torticollis. At birth, he spent five days in the NICU due to issues with meconium aspiration. A recent MRI showed normal results, and he also had a follow-up EEG after one conducted in July 2025. The results from this recent EEG were abnormal for a pediatric patient in awake, drowsy, and sleeping states. Notably, there were brief episodes of left frontotemporal delta slowing, which occurred mainly when he was awake and drowsy. There were no signs of epileptiform activity detected. In contrast, the EEG performed back on July 3, 2025, was deemed normal for both awake and drowsy states, again with no evidence of epileptiform irregularities, although it did not capture any sleep data. This examination was prompted by the child's existing history of febrile seizures. Importantly, he is not currently on any anti-seizure medications. The EEG procedure used standard electrode placements per the 10-20 system, conducted a single-lead EKG, and included continuous video monitoring. During the analysis, the background activity was symmetric, indicating some anterior-posterior (AP) organization, with a dominant rhythm of 50-80 microvolts at 7 Hz. His drowsy state was marked by a reduced amount of eye blink activity, less breathing motion interference, and a generalized slowing in theta/delta frequencies. Stage II sleep exhibited spindles and vertex waves patterns. Additionally, there were intermittent bursts of 250-300 microvolts in the left frontotemporal region with semi-rhythmic activity of 2-4 Hz, mostly observed during wakefulness and drowsiness. No definitive epileptiform discharge was noted. Photic stimulation during the test did not elicit a strong response, and hyperventilation was not conducted during this session.