Hello Neuro LimboLanders...just wanted to say how much I happy I am to have found this forum and reading your stories and symptoms has made me feel like I may not be "crazy" afterall! As a 38 y/o female that has been quite healthy I am at the end of my rope w/frustration with the lack of answers from doctors.
My first symptoms appeared about 4 yrs ago with periodic bouts of dizziness and severe fatigue that would last 5-7 days followed shortly after by onset of 24/7 tinnitus (which continues to this day), congestion, and fluctuation of hearing in my L ear. My PCP would treat the dizziness w/meclizine and the congested ear with loratidine and steroid nasal spray. The meclizine did nothing for my dizziness, but the ear congestion did seem to resolve.
In 2011, I had 3 more "dizzy" episodes and sought out an ENT who referred me on to an oto-neurologist. In Jan 2012, I had an MRI of my inner ear, 1 VNG w/rotational chair testing, caloric testing all which returned normal results, my hearing tests did show some bilat hearing loss that is most likely linked to being subjected to loud noises during my childhood. I have an extensive childhood history of ear infections and 3 ear tube insertions, so some of these symptoms I suppose are not surprising.
The oto-neurologist Dx was vestibular neuronitis and otolith disease put me on anti-viral therapy in Feb. 2012. He felt the herpes virus was to blame for the symptoms and told me to come back in a year. Not sure if anyone else has experienced bad bedside manner from their neuro but this guy was rude and I vowed never to return to him as he made me feel like I was a nutjob from the get go, but I was desperate for some kind of relief so I continued his anti-viral therapy (with no relief I might add).
Well my story doesn't end there, during the summer some other neuro symptoms popped up such as weird warm spots on my leg, a couple of numb toes, zaps/zings in my leg, goosebumpy patches w/o the bumps, tingly areas on my scalp, an electric current feeling that runs through my arms/legs, feeling of being off-balance most of the time, brain-fog and a hard time finding my words in a conversation, and heat intolerance (ie; hot showers) that bring will bring on the dizzy spells.
After 4 months of these new symptoms, I visited my PCP in October who instantly mentioned MS, but said because I had no vision problems he didn't feel a neuro was needed at this time. He did order a nerve conduction study, referral to new ENT and a sleep study (consult on Jan 3rd). In November, the new ENT ordered a new VNG which was normal and said that the anti-viral therapy probably wont work because the lack of evidence in studies conducted. The nerve conduction study was normal with no indication of peripheral nerve damage, and this doctor too mentioned MS and felt a referral to a neuro or MS specialist was indicated with all my combined symptoms, and he said he would recommend this in is letter to my PCP. I was told to make an appt. w/ my PCP as soon as all my testing was done....so I was waiting till mid Jan 2013 to revisit my PCP.......however,
That brings us to last Friday when I was hit with my worst bout with dizziness and nausea to date along with an entire tingly R foot, so I went to my PCP Friday afternoon....who gave me Zofran and meclizine (which isn't helping). He again mentions MS but says that my dizziness/vertigo is not a symptom of MS, (no mention of the lack of vision changes this time) but will make a referral to a neuro anyway d/t the tingly foot.
Sorry for the long post......just looking for some solid answers not guessing from doctors! It could be this or that isn't getting me anywhere.....I would just like someone to tell me what I can do to stop the progression of my symptoms.....and stop treating me like I am nuts. The lack of consistency from healthcare professionals is getting really frustrating :o/