Examples of my “lists”


1. Symptom List

Name

Address

Phone number or e-mail address

When did the symptoms start and why?

What symptoms (overview)?

Personal history with weight, height, occupation, marital status, possibly recreational activity (sport?)

Accidents

Pain history or childhood and youth history with symptoms (in my case because of the genetic disease)

All diagnosis

Allergies and intolerances

Medication

Surgeries

Family history (if relevant for your diseases)

Other relevant things

Already tried therapies (and outcome)

Brief summary of abnormal findings

If necessary, short bibliography with helpful publications
2. Diaries

Mast Cell Diary

Name, date of birth

Permanent symptoms in relation to mast cell reactions

Date of symptomatic day

Which symptoms occured in what intensity at what time of the day?
What did you eat and drink? Or what other trigger could be observed?

What drugs were taken at what dose? Emergency medication?

In between: What symptoms have gotten better over the duration of the therapy?
Pain Diary

Name, date of birth

Which joints are affected and what types of pain do I have?

Is there a period in which the pain is worse? (Such as menstruation-dependent)

Which current pain medication?
Date of pain day

Rating on a scale of 1-10

What kind of pain and in what areas of the body? Neuropathic, muscular?

What medication?
Dysautonomia Diary

Name, date of birth

Symptoms that I have permanently in relation to dysautonomia
Date of symptomatic day

Which symptoms occurred in what intensity at what time?

Which trigger could be observed?

What drugs were taken at what dose?

Schellong test if possible in order to monitor blood pressure and heart rate on symptomatic days.

In between: What symptoms have gotten better over the duration of the therapy?
Keeping a diary can help filter out some triggers of symptoms or help the physician to see whether medication is working or not (for example Schellong test). In addition it is possible to monitor the success or improvement over a longer period of time and adjust the dosage.

 

 

3. Possible questions related to EDS:

Of course, it always depends on the personal symptom history and these questions are just a glimpse regarding my diagnoses and symptoms.
Geneticist

Which EDS type? Clear mutation or skin biopsy possible?

Comorbidities? Are all my symptoms caused by EDS or do I suffer from dysautonomia?

What treatment options do I have? Physiotherapy? Medication?

What other specialists should be involved?

What further investigation is needed? (Sleep study, tilt table, allergy tests?, MRI, blood vessels, heart?)

Familial testing?
Mast cell specialist

Which markers are tested?

Treatment options (H1, H2 blockers?)

Emergency medication (if necessary epinephrin in case anaphylaxis occurs)

Preventive measures?

Colonoscopy yes / no, biopsy yes / no?
Neurologist

Dysautonomia? Possibly further diagnostics such as tilt table test, autonomous nerve system testing? Therapy?

Neuropathy like small fiber neuropathy, polyneuropathy (possibly Sqart, biopsy?)

Neuromuscular assessment? EMG? Muscle ultrasound?

If necessary, pain therapy
Orthopedist

Joint instability? Then possible braces, orthotics, compression underwear, shoe inserts?

Possibly X-rays of joints
MRI / CT of joints needed?

Prescription for physiotherapy or painkiller?

Support with all authorities (disability)?
Pain therapist

Which therapeutic options are available? Pills, patches, injections?

What treatment has least side effects and best success?

What kind of pain do I have?
Cardiologist / Expert for blood vessels

Mitral valve insufficiency or regurgitation?

Aortic root dilatation?

Aneurysms in other vessels in the upper body?

Necessary to order an MRI of the vessels?
Physical therapist

(for me one of the most important specialists)

Which therapies are available with low impact on joints? Water or Pilates?

Reports and publications? Books about EDS and physical therapy?

 

Neurosurgeon (for spinal problems)

Chiari?

Tethered Cord?

Cervical spine instability (C0/1/2, possibly even lower cervical spine?) Surgery?

Which surgical technique? What material? Why this technique?

What imaging techniques during surgery?

Surgery preparation?

Risks?

Chances of success?

How many CCI surgeries performed so far?

How much experience with EDS?

What differences are between EDS and normal CCI patients? (Publications?)

Other comorbidities including dysautonomia, mast cell activation

Hygiene? MRSA prophylaxis?

What are my main issues and why do I want to take the step to surgery.

What non-invasive therapies have I tried without success?

Which angles were measured and when do you consider them pathologic?
4. Possible questions related to cervical spine instability:
Neurologist

Radicular neuropathy?

Neurophysiology (nerves already damaged? Myelopathy?)

Imaging techniques? Upright MRI, CT in rotation, x-ray in flexion and extension?

Otoneurology?

Autonomous nerve system testings?

Possibly further diagnostics such as PET scan, a sleep study for central sleep apnea?

Neurosurgeon

Cervical spine instability (C0/1/2, possibly even lower cervical spine?)

Which surgical technique? What material? Why this technique?

What imaging techniques during surgery?

Surgery preparation?

Risks?

Chances of success?

How many CCI surgeries performed by now?

Hygiene? MRSA prophylaxis?

What are my main issues and why do I want to take the step to surgery?

What non-invasive therapies have I tried without success?

Which angles were measured and when do you consider them pathologic?
Radiologist / Neuroradiologist

What angles did you measure and when do you consider them pathologic? (See the angles which should be measured)

Compare old and new pictures if possible?

Experience with the diagnoses of cervical spine instabilities?

Publications?

 

Questions and Lists

Questions and Lists