Advice Labs, MAV, or MDDS?

Hi Board

I am looking for some input from you guys as I still have not been diagnosed with anything yet!!! my symptoms have been constant sine Dec 2012 Dizziness 24/7 (on Board a ship not spinning) Marshmallow feet while walking, Brain Fog, Cant focus properly with eyes, Headaches, Ear fullness, Ear pain, Tinnitus, Heat Beat in Ear, Neck Pain, Neck Stiffness, I have had numerous test MRI nothing, Bloods Nothing, EKG, Seen Neurologist, ENT, Physio, Chiro, Cardiologist, Massage, Optician, no luck with anything. Meds I have tried are Beta Blockers, Prozac and I am currently on 150mg Venlafaxine(Effexor). I went back to see the Neurologist last week and he suggested I might have MAV but the off balance on board a ship feeling was not consistant with MAV? He suggested I go back to ENT and get some VRT exercises. Off went to ENT only to be told that I could not have VRT because I was not diagnosed with a ear problem all though uncompensated Labrynthitis was suggested. The ENT Dr has now requested testing for my middle ear with will take 3-4 months wait (NHS)

So Guess what I am asking for guys is does the rocking on board a ship feeling 24/7 relate to Labs, MAV, MDDS?

If any of the symptoms I have listed sounds similar to a diagnoses somebody has had please can you let me know love to hear from you guys

Thanks Jamie (Wales , Uk)


I have similar symptoms and have been diagnosed with MAV. I know you are in Wales but if you are looking for an ‘official’ diagnosis then the department of neuro-otology at the UCLH in London is the best place to go, as they have the facilities to carry out a wide range of tests which can determine whether the root of your problems is in the inner ear, the brain, or both. Another option is to get an appt with Dr. Surenthiran who is based in London too. He is a MAV specialist. You will usually get seen within 6 weeks. MRI’s and the other tests you mention will not usually reveal anything if MAV is the problem. Neurologists are not always the best people to see for a diagnosis with this sort of thing. The one I saw first assured me I had a ‘mild case’ of labyrinthitis which would get better soon, but my vestibular test results from London show that I have a migraine-related problem in my brain despite a normal MRI.

Best wishes

Hi jamie
ALL your symptoms suggest MAV! I too, had them all, including the boat rocking, and was diagnosed with MAV (eventually!). In fact, the feeling of constantly being on a boat/raft 24/7 is pretty common amongst the MAV fraternity! I wonder how many MAV patients your neurologist has actually diagnosed!

I agree with sarah - see Dr Surenthiran or Dr Silver ASAP. You have been without a diagnosis/preventative meds for far too long - time to see a MAV specialist! I couldn’t find one in my home state so flew 2,500kms to see mine and never regretted it!

Hi Sarah

Thanks for your reply can I ask what tests did the do at the UCLH to diagnose you with MAV?



No problem, the tests they did were:

Hearing- Pure tone audiometry, tympanometry, acoustic brainstem evoked responses

Balance- gaze test, patch test, convergece test, saccades test, smooth pursuit test, ENG, Tandem Romberg, dynamic posturography, VEMPs

Hi barb/sarah

I have taken your advice and have an appointment with Dr surenthiran on Monday the 9th unfortunately I couldn’t get a nhs referral to the clinic in London Sarah as it seems my lab would not cover the cost for the testing. So I will have to pay for a night away and £265 pounds for a consultation with Dr S I hope he can suggest a course of action I will let you know how in get on.

Thanks both


Yes, I have the on a boat feeling and have mav.