Case History: Anne in Portland gets her diagnosis after 10 long years

FINALLY… A DIAGNOSISAfter 10 long years of doctors and tests, I finally was diagnosed with MdDS last week. As awful as it is, I am relieved to finally have a name for it. I am especially grateful to find the MdDS Foundation website.

Ten years ago, I took 3 10-hour flights within a 5-month period. Since then, I have had extreme fatigue, along with the rocking sensation. All of the healthcare professionals I have seen have focused on the fatigue problem, but for the most part just dismissed the rocking part of the puzzle. A few years ago, I finally just accepted the diagnosis of Chronic Fatigue Syndrome and have done my best to live with the MdDS symptoms.

However, last November, I came down with a cold, and the rocking dramatically increased. I saw my primary care doctor and she put me on Flonase, Sinutab, and motion sickness med. The rocking sensation continued to escalate to the point that I could not sleep without medication and could not take a nap even though I was/am EXTREMELY fatigued.

I then saw an ENT and had all the usual vestibular testing, along with an MRI of the inner ear and brain stem. As I’m sure is the case for many of you, all test results were normal. I was referred to a neurologist, and he diagnosed it as MdDS, although he knew very little about the disorder. He started me on Amitriptyline but I am uneasy about using a tranquilizer due to the risk of addiction. I am searching for a doctor in or near Portland, OR that is very familiar with MdDS. There are two on the foundation’s website, but I would really appreciate hearing from anyone who has had a positive experience with a doctor in my area. Thank you in advance to anyone who can advise me on this.

Anne P.
Air Travel
51 at onset

Case History: Anne in Portland gets her diagnosis after 10 long years was last modified: August 11th, 2017 by MdDS Foundation

19 comments

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  1. Sharon Chastain

    I am a 73 year old woman and I actually diagnosed myself with MdDS a couple months after being on my first 7-day cruise in April of this year. My husband and I took our kids and grandkids on a Caribbean cruise to celebrate our 50th anniversary. After doing some online research I realized I had a classic case with almost constant rocking, swaying and bobbing. Some days are worse than others and interestingly I had one day about 2 months ago with no symptoms at all but the next day it was back again. After seeing my primary care doctor I have tried a couple weeks of acupuncture, 4 weeks of physical therapy with a vestibular rehab specialist all with no improvements. I also tried 2 weeks of something called “Core Synchronism” done by a friend who is a massage therapist. That also did not help at all. Now it’s been almost 6 months since we got off the ship. I am exhausted all the time. As I tell everyone, this “condition” does not keep me from doing what I need to do or want to do but it is terribly annoying and frustrating.

    1. MdDS Foundation

      Sharon, you may want to join one of our online support groups. You will find lots of caring people with similar experiences and true understanding. https://mddsfoundation.org/support/

  2. Fran

    help all this is making me scared to go a my first cruise with my family and friends , can children get this. Also sometimes I get off balance by just moving my head to faced and sometimes it takes a day or two to get better.

    1. Adelle, can you elaborate, please?


      Publication of the above comment is not an endorsement by the MdDS Foundation.

  3. Robin Arnold

    Has anyone been to Mount Sanai for treatment of MDDS?

    1. Robin, if you are not already a member, we recommend joining one of our Support Groups, where you can use the search feature to see what’s been discussed in regard to the intervention at Mt. Sinai. You must be on a computer (or use a browser like Safari on a tablet or phone) for the search function to work properly. There are literally thousands of messages in the support group archives, and of course, you can ask questions directed toward those that have been to Mt. Sinai.

  4. Martha Meinert

    I have been rocking for about 15 months…not following a cruise or flight but after 6 months walking lopsided with a bad left ankle, wearing a boot or brace; then having pinched spinal nerves due to herniated lumbar discs, I could not stand straight. I was assured it would work out after major multi-level spinal fusion and disc replacement. (I had a huge surgery Dec 12, 2014.) It fixed the sciatica and low back pain but not the rocking.

    I have now done 5 months of vestibular PT and been to a local hearing & balance specialist MD, had numerous vestibular tests and no improvement. I know it must be MdDS but no one agrees since it did not start on a cruise or flight. Next I see a neurologist/vestibular specialist at CU Med Sciences center in Denver in Oct. I hope she will listen and perhaps refer me to Mt. Sinai Med School where they are having some success… not that my insurance will pay. I am nearly 71!

  5. Kimberly

    If you are looking for a Dr in the Portland, OR area… Dr Jeffrey Brown is a Vestibular Neurologist I see for MdDs through Legacy. I take a very low dose of Valium in order to function as well as a preventative migraine med every day. Vestibular Physical Therapy helped a lot with my balance issues but beyond that there seems to be no other help available here.

    1. Anne

      Martha, I would strongly recommend that you do take the brochure—that’s how I got my diagnosis.

    2. Anne

      Thank you for your response, Kimberly. I spoke to Dr. Brown’s nurse, and she said that Dr. Brown may be setting up the same treatment program that Dr. Dai uses—heard anything about that? Thank you….Anne

  6. Courtney

    Hi Anne,
    I am not from your area so I can’t help with Dr. In your area, but I am currently set for treatment at mt siani this coming November. I have been struggling with mdds for almost 1 year after a7 day cruise. In January my neurologist started me on pristiq and the after about two months switched me to Effexor. I took that for about 1 month and could not stand either of them. They then gave me amitriptyline but I did not take it as I could not stand the thought of going through the withdraws again. I saw an ent in May and was given Valium to use as needed & it seems to be helpful. Even though, I have not had the treatment at mt siani yet, I can tell you that in speaking with them, it is obvious that they are very familiar with mdds. Just speaking with them has given me more hope than any dr I have seen in my area. If you have not read any of their research, I would recommend doing so. If it looks like something that you are interested in, I would suggest scheduling ASAP as they are very backed up; I called in April and the first available appt was November. Best of luck to you!

  7. Susan

    I have been suffering with this illness for about 15 years now and still have not been officially diagnosed. The testing alone knocks me for a loop and I end up in the emergency room. I just do my best to manage living day to day and hope my symptoms don’t elevate to a debilitating level. As I write this I am listening to Cathy Helowicz on the radio and I can feel her pain. Each day I am at the mercy of this disease and I never know how I am going to feel. Thank you, Susan

  8. Judy Green

    I remember how excited I was to finally get a diagnosis! My excitement was fairly short-lived, as I realized that there was no cure, and limited treatment options. I do take the Klonopin, I really have no choice; if nothing else it reduces the anxiety associated with this awful syndrome. I was diagnosed about two years ago by a neuro/otologist, and he prescribed the Klonopin at that time. My advice is, if your doctor prescribes a med that helps you, take it and try not to worry about it being habit-forming. At this point, with no real hope of a cure, we have to do what we can to keep our sanity as we try to cope with the feeling of constant bobbing, swaying, rocking, and the feeling of walking on a trampoline. My best wishes to you.

    1. Anne

      Judy, thanks so much for your encouragement. May I ask how long you’ve been on klonopin and what dosage? Thank you—Anne

      1. Anne, we do not post dosages on the blog. They are sometimes discussed in our Support Groups, as personal experiences. For medical advice please consult your physician.

  9. Anne

    I just realized that I was unclear in my original case history posted July 16. I am taking the Amitriptyline ( an anti-depressant) prescribed by the neurologist because it apparently has been somewhat helpful for some patients with MdDS. I am uncomfortable, however, about taking an anti-anxiety med such as valium or klonopin due to dependency concerns. I just wanted to clarify…thank you, Anne

  10. Anne has been invited to join one of our Support Groups where personal experiences and recommendations may be shared but if you have a recommendation for her, please leave a comment below. Thank You

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