Patient portal

Advice for patients seeking medical testing 

Navigating the medical system can be very challenging for patients with iatrogenic disorders such as PSSD, which are poorly recognized and understood.

Common pitfalls

Many variables come into play when trying to overcome the challenges of acquiring the proper help and diagnostics. These include:

• Systemic (medical system) 
• Lack of recognition and general lack of knowledge on your issues 
• Miscategorization (wrongfully assigning symptoms to another cause)  
• Compartmentalization. Different fields focus on different specialized topics, which may fail to recognize if a patient has a more complicated and systemic condition that involves multiple aspects 
• Novel conditions where knowledge is lacking and research is still in early stages. Examples of this are sub categories within neuroimmunology such as autoimmune encephalitis, which has different clinical manifestations and subcategories, and is also not widely recognized knowledge. Subtypes are still being discovered 
• Individual (practitioners & patients)
• Doctors: 
  • Some practitioners may not have the required knowledge or expertise needed to properly investigate and understand your issues
  • Some practitioners may be too narrow minded and jump to conclusions instead of thinking outside the box
  • Some doctors may just have too big ego’s where their need to be right and in charge triumphs at the expense of truth and the patients wellbeing 
• Patients: Patients have many variables which poses certain challenges. 
  • Complicated medical records, which may include different diagnoses in different fields that pose a challenge and may lead to confusion 
  • Poor communication; some patients may be poor at communicating their issues, either not being descriptive or accurate enough - or being too descriptive and over-explanatory, where things get lost in translation. 

General tips

• We generally recommend seeing as many relevant specialists as possible to rule out potential causes or contributors to your symptoms. This includes; neurology, rheumatology, endocrinology and urology. Based on multiple anecdotal patient reports and test result data, the fields of neurology and rheumatology seem to be the most relevant fields when seeking medical attention for PSSD. 
• Focus on your symptoms, not the cause. Unfortunately given the fact that PSSD and related iatrogenic conditions are (currently) not recognized as being able to cause serious neurological complications, doctors are often quick to dismiss symptoms as psychiatric or psychosomatic, especially if you mention that you got the symptoms after using a psychotropic medication (antidepressants, antipsychotics etc). We recommend not disclosing this unless confident the doctor will believe you and not draw conclusions or make assumptions that are misplaced (such as attributing it to psychiatric issues), and rather just focus purely on the symptoms. 
• Documentation. Keep a centralized document or folder with your symptoms, medical history, test results, and appointment notes. This helps streamline communication between specialists and can reduce confusion.

We generally believe this is the safest route to go about to maximizing your chances at getting referred to specialists that will grant you the right  diagnostics required to properly rule out potential causes for your symptoms.

Step-by-step guide: 

1. Inform your GP about your symptoms (don’t downplay it). Get basic blood work that checks for vitamins, hormones, cholesterol and other relevant markers.
2. Ask for a referral to a neurologist if they do not offer this on their own. Other specialists like rheumatology, endocrinology and urology might be useful as well. 
3. Inform the neurologist of your symptoms. Emphasize especially symptoms such as sensory issues (numbness, pain), motor issues (tremors, spasticity etc), muscle weakness and cognitive deficits (issues with memory and executive function) that can not be easily attributed to psychiatric causes. Apathy and depersonalization may sometimes be taken into account depending on the doctor, but most often going into details of mentioning stuff like anhedonia and emotional blunting will be dismissed as “depression”. 
4. Acquire testing. If the neurologist doesn’t offer the right testing or doesn’t seem to take your case seriously or downplays the severity/urgency, try suggesting testing that may be useful. 

• Full body MRI - To assess for structural damage (brain, spine)
• Neuropathy testing:
• EMG (Electromyography) - Checks for nerve or muscle damage affecting movement. Useful for diagnosing large fiber neuropathy, radiculopathy, or motor disorders. Often done with Nerve Conduction Studies.
• QST (Quantitative Sensory Testing) – To detect sensory dysfunction
• Skin biopsy – To assess small fiber nerve density & diagnose SFN
• Autonomic testing (HRV, TTT etc) - To assess for autonomic dysfunction  (dysautonomia)
• Lumbar puncture (spinal tap) - To check for signs of neuroinflammation, infections, or autoimmune processes in CSF
• FDG–or TSPO PET-scan - To detect neuroinflammation or altered glucose metabolism
• Supplementary tests such as screening for genetic diseases
• Specialized blood panels for immune-mediated conditions such as specific autoantibody panels 

5. Second opinions and medical centers

• If you’re not getting anywhere with local specialists, consider traveling to larger academic medical centers or university hospitals. These often have more experience with rare or complex cases, and are more likely to have access to advanced testing.

Getting answers may take time and persistence, but you deserve thorough investigation and care. Even partial clarity can open doors to better symptom management and improved quality of life.