feeling like your falling over

[ack65]

Hi everyone,

I am trying to compile a time line of symptoms for my neuro appt. and am wondering if the falling over feeling might be a ms symptom.  It used to happen periodically to me if I bent my head forward but now I am having the sensation that I am falling to my left side throughout the day - even while sitting.  IF I move my chair at work it happens, or try to tie my shoes, or close my eyes at night, move my head from side to side to fast.  It is so strong now that it jolts me to try to stop myself from the fall.  I can't walk on hills without assistance.  I miss steps ...  It has now made me think that even standing close to any drop or stairs that I will fall.  Not fun.  So am I falling alone? Anna

[Ufrustrated2]

>>So am I falling alone?

i don't think so. i went to my first MS support group here in this city and everyone in there had a walker or scooter. i threw my cane in the dumpster a few years ago in a fit of being in a not so good mood.

ill get another one soon.

[Ufrustrated2]

>>Common, dude!  Try to retrieve your brain and use it!

i love your humor, especially towards doctorville. it helps me to laugh and rethink my anger relating to some of them.

though i know you are not being funny as the issue is a real problem with some of these doctors and their patient's well being.

[ack65]

Hi Audrey,

I just got home from driving to the store and told my hubby I finally figured out it is the driving that is making me feel sick at the end of the day - not working.  You described the sensation so well - it's exactely how i have been feeling this last month.  I have had this before and then it went away so I am hoping this will also.

I am making more of a time line of symptoms, dr's, specialists and ER visits.  Last time I brought a symptom list that was a page long the dr did not want to look at it.  I guess more testing is in our futures - good luck to you too. Anna

[Quixotic1]

Audrey is correct.  BPPV is tested for with a positioning test called the Hallpike Maneuver.  She describes it well.  The cure was developed by my now-retired vestibular specialist, Dr. John Epley (a saint upon this earth).  The treatment is called, appropriately enough, the Epley Maneuvers, though there are also derivatives of them, like the Caldwell Maneuvers.

Dr. Epley first reported his finding to the ENT world in the 80's and was laughed at throughout the profession, especially here in Portland.  He claimed near 100% cure rate and was considered a quack.  Little by little others tried the Epley Canalith Repositioning Maneuvers and they all had a close to 100% cure rate.  After about a decade of derision the manuevers were accepted as the proper way to treat BPPV.  Today all ENTs, ER docs, Neuros, vestivular PTs, and Chiros (plus many more) are taught these.

You can read Dr. Epley's story at:

http://www.aliveandwell.org/html/the_bigger_picture/cursing_the_cure.html

It is one of the reasons that I try not to dismiss new ideas, no matter how weird they may seem.

Quix

[Audrey_M]

ack65

If you are putting together a list of symptoms to help in diagnosis, I would recommend that you list your symptoms without being selective in terms of whether they fit MS or not. Otherwise, you are fitting your symptoms to lead to a specific diagnosis. What if you leave out a key symptom that would lead to a different and more importantly, correct, diagnosis?

I have had problems with disequilbrium for 8 years now and have seen ENTs on several occasions. Tinnitus is also something that has been more or less chronic. As first it was bilateral and then I realized this fall that it had gone away. Wow! It came back in my right ear in January along with the worst 3 month spell of lightheadness, balance issues and motion sickness. Driving is a white knuckle experience for me, with acceleration bringing on that nauseous feeling of motion sickness.

There are several mentions of BPPV in this post. My most recent visit to an ENT 2 weeks ago included the test where I was palced on my back with my head lower than my body, with the head to one side and then raised to a sitting position. This was then repeated with the head to the other side. With BPPV, once put in a sitting position, there should be a strong sensation of the room spinning along with a jumping of the eyes. I elicited neither response and the ENT does not consider my problems to be vestibular in nature. I did go through therapy years ago without any improvement.

When I mentioned white spots on an MRI of the brain to the ENT, he ordered another. Results are in, which suggest a demylenating process, as did the other report. Like you, I am putting together a list of symptoms, starting with major ones first and then listing others, along with a health history and tests/results. I see the ENT on Monday and expect to be referred to a neurologist (again!).

Good luck, and may you get an answer soon. It is so hard to live with symptoms that curb one's lifestyle, yet the endless string of doctor appointments can cause one to push things off until symptoms take one down another notch in life. I'd love to be my old self again!

[ack65]

Thanks Quix!  I needed a bit of a reality check.  Sometimes I start to think well maybe its all in my head  and I should just get on with it and quit looking for answers and then my symptoms flare and I once again get desparate for some help.  Last time I bought the migraine diagnosis but then I started to really monitor and record my symptoms and realized they happened with or without the migraine and included my legs seizing up two years ago so bad I had to use a cane to walk and my new bladder symptoms which started 2 years ago.  I just wish I could find a dr who would take me seriously and be willing to continue looking for an answer.  I am tired of being dismissed.  

Just one question - can they check for BVVP with a ct scan of your head/ears because I had one of those about a year ago when I told my old GP that the ringing in my ears was so loud I was losing my hearing.  It came back clear - whatever that means.  Thanks again, your the best! Anna

[Quixotic1]

First - one does NOT have migraine symptoms 24/7 forever.  Yes, I read one case report of a migraine that lasted a year, but I really doubt that.  How would they prove it?

Your symptoms of not being steady in space are very characteristic of what we see in MS, or in chronic vertigo of any kind.  It really does not seem much like BPPV to me from your description. but you should be checked for that anyway.  You should see a doc who specializes in vestibular disorders.  You can find one at vestibular.org the website of the Vestibular Disorder Assoc.  VEDA.  On the home page there is a tab for "finding a Health Professional"  There is also great reading for the layman on that site along with the site Lulu gave you.  (Timothy Hain, MD??)

BPPV is a problem of the inner ear and thus would be a peripheral problem.

The constant feeling (which may be real) that you are listing one way or another is a vestibular problem.  If there are other neurological symptoms, then this should be considered part of those symptoms until it is proven not to be.  The combination of vestibular, urological, muscle spasms etc.  must be viewed as a whole.  I dare a neurologist with a working brain to explain all of these as sequelae of migraine disease.  Common, dude!  Try to retrieve your brain and use it!

The MRI report says not typical of MS.  Okay, does that mean that it Excludes MS?

The criteria for diagnosing only requires that an MRI show lesions "consistent with MS" not "Classic for MS".

One thing the new neuro needs to hear is how long your symptoms have been constant.  Also, ask how many things cause "bilateral" face pain.

Now, I can't say that this is MS.  That depends on the throughness of the rule-out of the mimics and whether it can be shown that there has been spread of the disease in space (more than one attack) and spread of the disease in time (more than one spot damaged in the CNS).

Your second neuro.  Hah!  Since my MS is now thought to have begun 11 years ago, I can say that I went through 8 neuros and am on my 9th.  Only the last two recognized my symptoms (weakness and spasticity, incontinence and TN) for what they were.

May April 18th bring you answers, or at least a thinking doctor.

Quix

[ack65]

Thanks Lulu,

I will check out the info and sadly this is my second neuro.  My first was 4 years ago and diagnosed me with atypical migraine with only a ct scan.  Vertigo, numbness on left side face to foot, lack of balance and coordination and disorientation were the symptoms and I went to the ER 'cause I thought I was having a stroke.   Then it was 4 years of symptoms and complaining and 2 rhumatologists and I finally switched GP's in December 2009 and she thinks ms - hence neuro #2.  I have finally had a brain and c-spine mri in Feb 2010 which showed T2 hypersensitivities in the white matter "not typical of ms" in the brain & c-spine clear (radiologists report) and have been waiting to see the neuro for follow up - April 18 I go.

I have learned SOOOOO MUCH on this forum - you all are the most knowledgable and friendly folks out there!  Thanks so much for that.  I am trying to come up with knowledge based questions to challenge the possible "migraine" brush off.  Such as how does that explaine my balance issues, bladder issues, extreme fatigue, muscle spasms, ceasing up ...

I really hope to get somewhere this time.  I am getting tired of this limboland.  Looking back I think my problems started way before 4 years ago.  I just did not realize my symptoms could be related.  And it has only been since Jan 2010 that I really started to learn about ms and realize that most all my problems fit here.  Anna  

[Lulu54]

No, Anna.  We are all falling together.:-)

The balance problem you describe is pretty typical for MS.  But it can also be caused by other things, such as BPPV.  

Your mention of stairs and drops making you feel like you will fall sounds like me.  A session with the therapist for BPPV pretty much took care of that feeling.

Here's a great website for explaining all things related to balance

http://www.dizziness-and-balance.com/disorders/bppv/bppv.html

This is a doctor who practices at Northwestern University, I believe, and there is a ton of good stuff there, including videos of many of the therapies.

Keep in mind that you can always have more than one problem - My BPPV is much better but I still have the staggering and list to one side problem on most days and that comes from my MS.

I'm sorry I don't remember - is this your first neuro appt?  Either way, good luck in preparing.  And remember to use your own words to describe your problem and DON'T mention that you have been looking on the www.  That is the quickest way to be labeled a fraud and shown the door.  

be well, Lulu