Hi, new, am I odd?

Specific Illnesses & Conditions VM/MAV
1

Hi all!
Nice to meet you!
Well, I’ve been having symptoms since Dec 2005!!!
All started like a bolt out of the blue. Before this perfect picture of health (now 32).

The best way to describe the first attack was like being drugged suddenly then like fear of impending doom and spinning in head. Felt like a complete loss of control of my own body. From then on everything felt surreal, I felt like I was in a cartoon accompanied with odd feelings while walking, problems with up right posture, brain fog, exaggerated head movements and severe problems with balancing/stepping into the ground. Plus panic attacks from the shear fright of what was going on. Stayed in for 4 months as so disabling!!

So saw cardiologist, neurologist, audiologist, neuro-otologist, physiothearpist. I did not see an ear specialist until 3 years into all of this. By this time my brain had learnt to compensate a lot. Vestibular exercises didn’t help either. No meds or anyone has helped or given me a diagnoses!!

Had numerous MRI’s, nerve conduction tests ect.
The only thing that showed up was from head shake test, one other balance test and Romerg sign (standing with feet together then closing eye). I always find standing like that a problem but more so when shutting eye. These symptoms come and go in severity.

Sat while walking I felt a sudden burning sensation in my back, then felt really odd, not with it; I even had a difficulty breathing in and out!! It felt like I was struggling to do it!! Very frightening!! Then problems with stepping and just not feeling right. Had a tough shift at work yesterday as was so difficult getting from A to B! Today alittle better but have just been sitting a lot.

My friend thinks it’s MAV.

Anyone similar to me?

Thanks Kelly

2

Hi Kelly,

Welcome to the forum (unfortunately for you), I can relate to a lot of your earlier symptoms. I am suprised you have not been able to get a diagnosis so far after all the specialists you have seen. Maybe you should see a different neurologist, one who is familiar with MAV for a second opinion (or sixth). Good luck, this crap is pretty frustrating.

Thanks,
Steve

3

Hi Kelly,
It sounds like I could have written this post myself, and I have mav.
I’m sorry you’ve had such a hard time being diagnosed, it all to comen with mav.

jen

4

I feel like i could have written that myself also and can relate to a lot of what you are saying.
I’ve had this for 2 years and my major complaint is 24/7 disequilibrium and definitely know what you mean when you say ‘stepping into the ground’.

some doctors think i may have MAV. i think i may have MAV. but who the hell knows.

i’m currently trying an anti-migraine med - if it cure’s me then maybe i’ll get my answer. YES it’s MAV.

5

Hi, you’re not odd at all; you are unique. My heart breaks for you that you have gone so long on your journey with no diagnosis. It took me years to get a diagnosis also. I thought I was going crazy because no one could figure out what was happening to me. I once had a Dr tell me I was having anxiety and panic attacks. I told him sure I’m having them but it starts AFTER I feel like I am going to fall over. So frustrating. I would recommend going to a new Dr. You have nothing to lose and everything to gain by it. I went through a few Drs before I found one that would listen to what I was saying.

Welcome to the forum. I have not been here long myself but there is so much you can learn at this site. I hope you get some answers soon.