Hello! I am new to the board but have been lurking for a few weeks…decided it might be time to post my story for what it’s worth. I have enjoyed reading the experiences of others…some sad, some happy, but all of us have had a journey, some more difficult than others.
I will try to condense my story a bit as it is quite long. Way back in 1999, I had an ear infection. The ear infection led to bronchitis, then pneumonia in quick succession, despite the use of increasingly strong antibiotics. Once the infections cleared up, I was left with a feelin of “dysequilibrium” which was then dianosed as viral labyrnthitis and I was told by my ENT that it would just “run its course”… So being the good patient that I was at the time (as I up to that point had never had health issues), I waited, and waited and waited… Finally, aftre 6 months and increasing bouts of disequilibrium, my husband and I went to Johns Hopkins in Baltimore to see Dr Minor. There I had the tests that are probably familiar to all of you…spinning chairs, water in the ears, balance tables, etc…oh joy! Although Dr Minor saw a small percentage of damage to my right ear, he felt that I should be compensating for it and decided that I needed to be seen by a neurologist. OK… again… a round of increasingly more invasive tests…MRIs and MRAs, 3 spinal taps, and the worst of all…a brain angiogram… During that test, I experienced a vascular spasm which led to … a terrible migraine and double vision… Yay…now I had dizziness, double vision and a migraine… After a few days resting in the hospital I returned home straight to my bed for a period of time… and waited…and waited… Although the double vision and headache cleared up, the disequilibrium feeling remained.
Then…a diagnosis from Hopkins. I had multiple sclerosis. Although my clinical symptoms did not exactly indicate MS, I had “paraventricular white matter” or lesions on the brain which helped to diagnose MS in my drs mind. He did admit that it was an “unusual” presentation, but still felt confident i his diaagnosis. Not what my husband and i wanted to hear, but at least we felt that we now had a diagnosis and would be able to have medication or physical therapy to help with my symptoms. I started a course of Avonex ( a weekly shot) and continued that for a year. In the meantime, my husband and I went to both the Cleveland Clinic and the Mayo Clinic for second and third opinions. Both concurred with the diagnosis. So armed with diagnosis from three of the best hospitals in the US, I accepted the fact that I had MS and that was that.
A year later, I was diagnosed with “neurological lyme disease” and underwent 6 months of daily IV infusions. Again, no fun, but I trusted what they were saying.
Years went by and I continued with my life the best that I was able. Some days were ok, with mild dysequilibrium and some days were horrible… I kept busy raising our son and being an “uber volunteer” to keep very busy. Unfortunately, quite often my symptoms got in the way! Let me add here that I have a wonderful husband of 28 years who has been by my side throughout this journey…always there for me. Despite the fact that he is an executive with a major fortune 500 company, he has never missed a doctors appointment and has taken me around the country to find answers. Thanks for that honey!
Fast forward to last year. I was at my annual “Hopkins checkup” with my latest MRA. The lesions which had been small had for some reason become quite numerous and large. My doctor was puzzled because the lesions had stayed stable for over 10 years. Also, I had been having a particularly bad spell of syptoms prior to my visit… continued disequilibrium, migraines with aura and pain (which I really hadn’t had before), severe fatigue and vomiting…such fun this is!! At that point, my doctor raised the idea of “vestibular migraines” and sent me to see a colleague…the “dizzy dr” at Hopkins…
"Dr Dizzy’ (I mean no disrespect to him with that…he is called that!) agreed that I was having silent migraines and that I probably did not have MS after all…WHAT??? My husband and I looked at each other and tried to digest this information…happy news to confusing too…what the heck were silent migraines?
During my years of dizziness, I had also developed some symptoms of panic disorder as most of us do… very difficult to control when you are dizzy. I had walked out of meetings, stores, pulled my car over (when it became difficult to drive) and this ugly disorder raised its head quite often. I was given Ativan to help deal with that and it seemed to relax me.
Taking the new diagnosis in hand, my husband and I saw Dr Rosenberg at the Hopkins Headache Center (who actually gave me this website) and also a doctor at the Georgetown Headache Clinic which is closer to our home. Both concurred with the diagnosis.
So…here I am newly diagnosed with symptoms that have become even worse…disequilibrium, severe fatigue, vision issues, migraines with lots of pain and oh yes…let’s throw in a panic attack or two!
Dr Rosenberg started me on Topamax but after 2 weeks I developed a rash over my body. Obviously i was allergic! I was liking it though and hopeful that it would work. I was switched to Verapamil (80 mg) at night along with Ativan three times a day as needed. I forgot to mention that I also have something called Vocal Chord Dysfunction which causes my vocal chords to spasm and make me feel that I can’t catch my breath. The ativan helps with that also.
So…here I am at present day…phew! sorry so long, but wanted to get my saga out…it is cleansing!
I am a very positive, “glass half full” type of person. I have been educated with an undergraduate and graduate degree. I have a wonderful, loving husband and a 19 year old son who attends one of the top universities in the country, plays football at that university and has never given us a day of worry. I’m not trying to brag here…just to give you an idea. This disease has brought me to my knees!! I have all the support in the world…have seen the best doctors…have been misdiagnosed…now hopefully on the right path…but still not feeling welll!! I have been on the Verapamil for about 6 weeks and just had my first migraine last week which is still in process… I have been unable to drive or do anything for that matter. I was told to take Ativan three times a day along with Benadryl and that has helped a bit…
So here I sit…hoping to feel better each day. It is very comforting to read your stores…now you have mine and I’m hoping that this site willl be able to post many more success stories along the way. I’ve read some compelling stories from some very compelling people. I hope that my story can also help in some way and I hope that I will be a success story at some point. I refuse to give up. I’m stubborn that way
Thanks for allowing me to be a part of this I look forward to any ideas and comments that anyone may have.