2nd thoughts about weather or not I have MAV?

Hello! I’ve been following these boards for about 7 months or so and its been so helpful. I was beginning to think that I would never figure out what was going on with me.

For a while I thought that I may have MAV. I had so many symptoms just like the ones that many people describe here. Constant vertigo attacks that would leave me feeling weird for weeks, balance issues, tinnitus, visual disturbances, neck pain, heavy head, pins and needles.

I saw a neurologist for the first time this week. It took several months to get in to see one. He told me that he doesn’t think that I have MAV or even migraines. He said since I have headaches nearly every day, it doesn’t seem like migraines. That they would be more episodic. He ordered a MRI and a gaze evoke test.

I’ve seen an ENT who ruled out mieneres disease and other ear issues. I do have fluctuating fluid in my ears but he said that he thinks my issues are neurological. I’ve seen an opthamologist who says my eyes are healthy.

The neurologist is saying that my symptoms are “non specific” and if it were neurological it would have to be a condition that would be affecting my entire brain since my symptoms all originate from different parts of my brain.

I sat down and wrote down every single symptom that I’ve had. My most bothersome lately has been the increasing after images that I get. I can look at something normal (for example my cat) and look away and still see my cat for a second. Its really distressing to me. The neurologist sort of blew it off and didn’t even address it.

I started googling it and came across a video about Lyme Disease where someone was talking about the visual disturbances and it sounded just like everything that i’ve been going through! and a light bulb went off in my head. What if I have lyme disease?!

I decided to look back in my phone and see what I was doing around the time that this all started. I remembered that when I first got the visual disturbances that I took a photo of my eye because I thought something was in my eye. I went back and found that picture. There was also a picture that I took around that time of what I thought was a spider bite. I took a picture of it because it was on my back and bothering me. I couldn’t see it, so I used my phone to take a picture of it! I think it was a tick bite and not a spider bite!!! Then, I went back to my facebook account and looked at what I was saying around that time, and I was complaining of having the flu!! WOAH.

Back in January of this year, I was feeling extremely sick. Like my body was being attacked. I spent three weeks in bed and lost a bunch of weight. The vertigo was happening everyday. My ENT prescribed me a course of AMOX and I felt better immediately! I found out that amox is used to treat lyme disease! Is this why I’ve been better this whole time? I’m feeling so much better these days aside from the lingering visual issues. I’m pretty much back to myself.

I’ve seen that some people on this forum have ended up having lyme disease. I think the symptoms can be so similar. I made an appointment to see my doctor tomorrow. I’m going to present the evidence and see if she will test me for it.

Anyone out there with lyme on this board? Anyone that can relate? Any advice or ideas?

Thanks!!

hi carrie it sounds to me you could have something there with taking the amox and then you feeling abit better it might be worth you getting checked out!

I still believe that any condition that presents with spinning vertigo must have something to do with the ear.

Does sound like MAV and i think your neurologist is wrong…you can get headaches every day from the…vertigo…nausea…blurry vision…auras…all sorts of issues. Think its another case of the guy is old school and only picking up on the migraine bit…migraine vertigo is a totally different beast…get the right medication…try propranalol first …worked for me…then other MAV meds if necessary…

I thought I would update everybody with a few of my test results.

My western blog was negative. Apparently, because I’ve been sick so long, the chances of it being a false negative are low since I would have produced antibodies already.

My MRI was normal except mastoiditis.

I went to my ENT today to have my left ear cleaned out. He discovered that my ear drum has actually shifted? He said that it is retracted. He said I would need surgery to repair it and gave me a referral for an ear specialist/surgeon.

Oh poor thing. Let us know how you get on! Good luck with your referral!