Seeking a diagnosis in the UK?
If you have MdDS but have not yet been given a formal diagnosis, there are several issues to keep in mind. The American Foundation lists doctors in the UK who can make this diagnosis but it is important to note that they are unable to endorse these doctors. Knowledge about MdDS is still patchy here, so it can be a good idea to seek a personal recommendation from members of the Facebook groups, including the one set up specifically for people in the UK. MdDS is usually diagnosed by neuro-otologists, audiologists or ENT specialists. But there are ENTs in the UK who don’t believe MdDS exists so – be careful.
If anyone diagnoses you with ‘vertigo’ you need to be extra careful. The most common cause of this is thought to be BPPV and the treatment is the Epley Manoeuvre. This can be harmful for people with MdDS so is best avoided.
When you go for a consultation you may be asked to complete a ‘dizziness’ assessment form. Some of these are over 40 years old and were compiled before there was a good understanding of neurovestibular conditions. IE they might be useful for people with inner ear conditions but they’re not always relevant for recording the symptoms of MdDS. Although it’s not perfect, the form I like most is this one:
You might want to print and complete it before you go for your appointment because hospital lights and form-filling is not always a happy combination for someone with these symptoms. Especially if you’re in an enclosed space when you try to complete them.
You may also be asked to complete a ‘depression and anxiety’ score sheet. These are highly simplistic and I find them depressing and condescending.
You may be required to have a barrage of tests, some of which can be very unpleasant at the time and leave you feeling … yes, you guessed it, dizzy and nauseous. It’s a good idea to take someone with you to help you travel home after these tests. If you have the caloric test, make sure it is with water not air. The air test can give ‘false positive’ results (see Tim Hain’s site for further information).
If you are advised to have an MRI ask for one which includes voxel based morphometry if you can. These are the type of scans Dr Cha uses in her research and if you have one, you can ask for your scan to be sent to her along with a short case history.
MRIs can trigger vertigo. Although this usually won’t last for long it can be unsettling on top of MdDS symptoms. Again, it’s worth having someone with you to help you get home safely. In many cases you will spend far more time being tested than you will with a consultant. This can be frustrating because you may have lots of questions and any answers you get often lead to more questions. If I could have my time again I would have used the consultation time to check that the person I was seeing was up to speed with the current research and could recommend whether I should seek cranial stimulation or opto-kinetic stimulation by way of a treatment, should either of these become available in the UK. This link from GARD gives a good breakdown of these treatments.
A good consultant should ask you about family history, including any history of cardiovascular conditions. They should also ask about your personal medical history so it’s worth jotting down information about head injuries and operations, no matter how long ago they were. There are many different things that will have contributed to making you susceptible to MdDS and it can help bring peace of mind if you understand some of them. If you feel you need onward referrals (such as into neural ophthalmology to check for convergence insufficiency and binocular vision dysfunction or for a tilt table test if you are experiencing the symptoms of PoTS) then ask the consultant to mention these in their clinic letters. This can save a lot of time back in Primary Care.
I have noticed an increase in the number of patients who are being diagnosed with ‘psycho-physiological dizziness syndrome’ and sometimes this diagnosis is being used to over-rule a previous diagnosis of MdDS. This PPDS diagnosis is flawed because it does not explain remission or why we often feel better when we are back in motion. Neither does it explain why symptoms can be affected (for better or worse) by physical/environmental factors such as hormone fluctuations or changes in the weather etc. Make sure you check what diagnosis you are going to be given and if you are told either ‘PPDS’ or ‘space/motion discomfort syndrome’ or ‘Chronic Subjective Dizziness’ you should question this. These are ‘wastebasket’ diagnoses which, effectively, blame the patient for symptom continuity.
My consultants all say that complex neurochemistry and neuro-connectivity is responsible for keeping me out of remission. This may not help much, because they don’t know how to fix it. But at least they are not suggesting that I’m responsible for the symptoms in any way.
Meanwhile Professor Wuyts and his colleagues are working to improve the diagnostic process for all patients with vestibular and neuro-vestibular conditions. They are also learning from mistakes made in the past, by including patients in their discussions. Tania, Prof Wuyts’ former patient and co-author, is representing for MdDS extremely well in these discussions, despite not having it herself. VEDA have also made a commitment to raising the profile of neuro-vestibular conditions such as MdDS and Vestibular Migraine.
Finally I would suggest that you record all your consultations. Cog-fog is a common feature of MdDS and if you’re trying to remember everything you are being told, it can be hard to also concentrate sufficiently to remember the answers to all their questions.
Polly Moyer March 2016