Vertigo

[deborah0904]

Well, I've not yet received a diagnosis however; I do have one lesion on right temporal lobe (white matter).  Several weeks ago at night I began having vertigo when lying in bed on either side.  Yesterday, the vertigo decided to attack me while I was at work.  It happened everytime I had to look down.  The Nystagmus thing started happening everytime vertigo hit.  I had to have my hubby come pick me up from work so I wouldn't have a wreck and kill someone.  I also had weakness in arms and legs and my typical tingling jaw.  I knew it wasn't from a stroke because I'm used to these symptoms happening at other times.  Yesterday, I also had a horrible time finding the right words to say.  I have this everyday but yesterday was the worst because all symptoms were so strong.  The rib pain has been horrible and just won't go away.  Getting alot of leg cramps and am always stiff.  I've gotten so used to the stiffness that I forgot I was stiff.  Does that make sense?  I have so many symptoms that I've just attributed to an old back injury.  Now, I'm going to push for the spinal mri.  I'm almost positive I'll have spinal lesions.

This morning the vertigo is gone but my balance isn't the best. I do notice if I try to focus on one thing that my eyes move back and forth.  It doesn't seem as fast as it was when I was in midst of the vertigo attack. I've read alot of posts and see others write about the running mouse from the corner of the eye.  OMG! I've had this for so long but didn't think it was anything to mention to the Dr. In reading these posts, I am right there with everyone but the diagnosis just isn't there.  With only one seen lesion and 2 clear spinal taps the dr. hung his hat.  My pcp called me back yesterday and is arranging a 2nd opinion with another well known Neurologist who treats MS.  He accepts patients by referral only and he has to view my chart first before I can get appt.  Arrgh!!!!!!!  Oh well, I'm getting closer so I'll just be patient.

Thank you to everyone who is so supportive!  Love ya. deborah

[deborah0904]

Thanks.  I appreciate your advice.  It's funny you mentioned videoing the nystagmus.  I just thought of that about 20 minutes ago.  I felt like the Neurologist was just saying that about the visual evoked potential because of the spinal tap.  My last visit with him had me so discouraged because he couldn't give me an answer.  

I feel within my heart that MS is the answer.  For me, it wouldn't be so much a bad thing.  I think it will give me closure from all the mysterious symptoms I've had for 20 plus years.  My husband is so tired of me complaining.  He's very loving but I wonder if he feels like it's psychological.  My psychiatrist who is treating my dpression assured me that my symptoms are real and he strongly feels the depression is associated with my illness.  I just want something to help my symptoms so I can move forward with my life.  

I'm now concerned about how my career will be affected.  I can't be off work very much.  I'll have to look into my options there.  

Well, thanks again Quix,  I appreciate you.   Have a great day!

[Quixotic1]

Well, you know how I feel about having a negative spinal tap.  So what?  When it is negative it does NOT mean that you don't have MS.

If the VEP was unreliable with glasses then they couldn't use it on a huge percentage of the population!  That is something I have NEVER heard or read.  Yes, Yes, Yes, you need to see someone else who really does specialize in MS and can put the pieces together.

I have had vertigo like you describe.  Make sure your doctor sees you while the vertigo is being very active.  He should document the nystagmus.  Another possibilty is for your husband to vidoe the nystagmus to show your doctor or the new neurologist.  Or, you could go to an Urgent Care when it is acting up to have them document it.  Find out what movements always bring it on and do it for the doctors.

Nystagmus is never normal except for those few people who are born with it (like albinos) or when someone has been whirling around really fast (like on a rope swing) and for a few seconds when they stop they have nystagmus.

The best test for vertigo is the VideoElectroNystagmoGram (the VNG or VENG).  this is done by ENT specialists who deal with Vertigo or by Neurologists.

Vertigo can bring your active life to a halt.  I know how awful it is.  It isn't dangerous by itself except that it can cause falls and you shouldn't drive or do any climbing with it.  Also, it makes it risky to carry children or other precious things.

All of these things that are happening to you must be documented and mentioned to your doctor.  Good luck and I hope this has been useful.

Quix

[deborah0904]

I have been seeing a neurologist for 2 years but he is stumped. That's why I've asked my pcp to refer me to someone else.  The specialist I've been seeing is more of a seizure specialist.   I have also seen an opthamologist.  The neuro says that my symptoms are just like ms but my spinal tap is clean for banding.  I have the lesion on the temporal lobe.  I had a visual evoked potential test that showed some abnormalities.  The Neuro said it was because I wear glasses but I don't believe him.

[Deb61]

I have many of the same symptoms you do.  I'm glad your PCP is referring you to a neurologist.  I hope it gets a movin' so that you can get in there to see him.  I have a lot of vertigo problems.   Nystagmus is something that isn't seen every day in the normal adult population (according to my opthamologist).  Have you been to an opthamologist?  I'm sorry if you've mentioned this before--my brain is dead today.  

Hugs, Deb