Like most patients it took me a long time to get from my first symptoms to a diagnosis. I saw multiple doctors, had multiple delightful tests, and gave my body weight many times over in blood and pee samples. I thought once I found the right doctor and had a diagnosis, I would find a quick treatment and be back to normal. Oh to be that naive again. Even after diagnosis the increasing complexity and changing nature of my symptoms has made my treatment difficult. A quick review of any patient forum shows I am not alone. We are a complex bunch and for many, effective treatment remains elusive.
The Autonomic Nervous System is spread out throughout the body from head to toe. It innervates multiple body systems and multiple organs, which in turn means we can have many and varied complex symptoms, which can change on a daily basis. Add in that many patients are contending with multiple other illnesses on top of Dysautonomia and we are one complex and puzzling mess to manage.
Five minutes in any Dysautonomia support group and you'll find clusters of illnesses and disorders: Ehlers Danlos Syndrome, Mast Cell Activation Disorder, Degenerative Disc Disease, Rheumatoid Arthritis, Endometriosis, Complex Regional Pain Syndrome, variations of neuropathy, diabetes, thyroid issues, migraines, the list goes on and on.
Between the diagnoses directly related to autonomic dysfunction and the many comorbid conditions that seem to cluster with Dysautonomia, diagnosis and treatment can be confusing. As patients we need to move from the idea of a single doctor to treat us, and each develop our own team of doctors and other health professionals, specific to our individual needs.
Often we hope that once we find a Dysautonomia specialist we will find someone who can treat all our various issues. The reality is that one doctor, whatever their speciality, is highly unlikely to be able to deal with all our complex and confusing symptoms. Specialisation means that doctors are experts in discreet fields with only a cursory or general knowledge of other specializations. Even within speciality, most will specialise in specific diagnoses or areas of treatment. Eg one neurologist may specialise in movement disorders, another in stroke, yet another in epilepsy. As such, unless your presentation is simple or symptoms mild, a single doctor is unlikely to be able to cover all your care needs. Instead you need to turn your mind to developing your own specific team to manage your care.
As patient's we need to advocate for ourselves and assemble a team of health professionals to meet our specific and often changing needs. This is not always an easy process and can take months or even years, before you finally create a team with which you are happy. There may be team members who are only needed on a one off, or infrequent basis, and others that are more central to your team who you will see on a regular basis. You may also need to introduce new team members as new symptoms appear, or remove members as symptoms stabailise, or resolve.
Finding that one doctor who not only believes you, but understands the condition, can be the hardest step. I saw a large number of doctors before finding my current Cardiologist, who is both my primary specialist and coordinator of my care. I had many disappointing appointments and wasted much in the way of time, money and sanity, in dealing with a system that failed to recognise my symptoms or place them in the correct diagnostic category. However, I was lucky that I had a fantastic General Practitioner (GP) at the time and she not only believed me, but was willing to work with me to find out what was going wrong with my body.
I cannot stress enough the need to find a GP that you can work with and trust. In many ways this one doctor will be central to your ongoing care and well being. Your GP will be your first point of call for many aspects of your day-to-day healthcare. They can coordinate referrals and help manage your medications, blood tests and investigations as well as regular health needs. When you have a complex condition it is important to have a regular GP who is familiar with your condition and all it's quirks. When you have Dysautonomia, your normal is quite abnormal to that of regular patients eg I frequently have no discernible peripheral pulse. Concerning in a normal patient, but a cause for a shared laugh with me. Having to explain this to multiple doctors unfamiliar with your condition can be exhausting and distressing. For example, a regular cold can exacerbate autonomic symptoms, and a reduced immune system can lead to secondary opportunistic bacterial infections developing rapidly. Without fail my simple cold will turn to a chest infection, my GP knows this and a quick antibiotics prescription, rather than a wait and see approach, has avoided much in the way of hospital visits. A GP unfamiliar with my history would be unlikely to be so proactive, something I have discovered in the past and led to a worse infection and longer recovery.
The likelihood of finding a GP who is familiar with any forms of Dysautonomia is highly unlikely. However, if you find a GP who you are comfortable with and with whom you have rapport, you can provide them with information on Dysautonomia. Create a package of the key articles from reputable journals, that you can give to your GP to update them on the latest research and treatment options. A good GP will be willing to learn about Dysautonomia, your medications (eg Midodrine is not a regularly prescribed medication and few GPs are familiar with it's uses) and keep up to date with all your specialist letters. They will also liase with your various specialists at need, and take direction on your care. They will be willing to work with you on your care and know that in many ways you, the patient, are the expert. When you find that GP hold on and don't let go. They are like gold. I would also suggest finding a back up GP at the same practice for the times when your regular GP is away or unavailable.
Once you have a GP you need to find a Dysautonomia specialist. Depending on where you live this can be difficult. There are listings of specialists available on some websites, but these are not always comprehensive or up to date. Often it is easiest to go onto one of the many patient forums and ask if anyone knows of a good specialist in your area or country. Depending on your presentation and issues such as rapport, you may need to see a number of specialists until you find one you are comfortable to work with. Specialists also differ in their approach to treatment and theories of causality and the types of investigations they will do. It is okay to say it's not working and ask for a second or even third opinion until you find the specialist that is right for you.
Most commonly your primary treating specialist will be from one of two specialities, Neurology or Cardiology. Often the choice of primary specialist will be determined by your main presenting symptom. Eg if your primary symptom is tachycardia or bradycardia, then you will likely be sent to a Cardiologist. If you primarily have migraines, cognitive issues or changes in sensation you may be sent to a Neurologist. Whichever speciality becomes your primary, this person will coordinate the majority of your care, including testing, treatments, and referrals to other specialists.
However, the complexity of Dysautonomia and the involvement of many body systems means you may need multiple specialists. For example, if you have gastric symptoms such as gastroparesis or IBS you will need a Gastroenterologist, if you have insomnia or hypersomnia you will need a Sleep Specialist. As such every patient's team will vary according to the type of symptoms they are experiencing. Most doctors specialising in Dysautonomia will develop a team of fellow doctors from varying specialities who also have knowledge of autonomic conditions, and to whom they can refer their patients for other specialist care.
The other issue to remember is that it is easy to attribute all our weird symptoms to Dysautonomia. However, new symptoms should always be checked out as they may be unrelated to your autonomic issues and more importantly may be treatable and in turn improve your autonomic symptoms. Appropriate treatment of issues such as hay fever or even pain, are known to help manage autonomic symptoms. Appropriate management of other comorbid conditions may also lower overall disability and improve health and functioning. All of which leads to a better quality of life.
To give you an idea of what your eventual team may look like, this is my current team:
- A regular GP
- A Primary Cardiologist who is a specialist in Dysautonomia and coordinates the majority of my care. We've been together since 2007.
- A Primary Neurologist who is a specialist in neuromuscular neurology and electromyography
- A Gastroenterologist with knowledge of autonomic conditions.
- A Dietician to direct my diet and manage my complex food allergies and intolerances and gastric issues.
- A continence nurse
- A continence physiotherapist
(At times it has also included a back up GP (still searching for that one at the moment) a sleep specialist, a physiotherapist, an allergist, a dermatologist, physiotherapist, social worker, occupational therapist, a variety of neurologists and neurophysiologists.)
I see some members of my team regularly. Others I see on an at need basis. But I now have a group of health professionals who can manage my symptoms and address my health care needs. And most importantly I have a group of health professionals who I trust and who know my case.
Your team may look very different to mine, as it will reflect your specific health needs, but it gives you a general idea of how it may eventually look. It takes work to develop a good team, but it is worth the effort.