Do you actually have to hit the ground for "loss of balance"?

[Fluffysmom]

This question has been bugging me for some time.  During my neuro exams, I do things like when she has me walk on my toes, I can't stay balanced and wave my arms and step out to the side.  My legs, especially my right one, is shaky when this happens.

Same with walking heal-to-toe; I'll sometimes do fine, other times I end up stepping out and bending to catch my balance.  I wouldn't pass a field sobriety test, lol, and I don't drink.

During my last visit, my neuro had me out in the hall, and asked me to stand on my heels.  I started to go over backwards; my tiny neuro couldn't have caught me.  My hand snaked out and caught the jam of an open doorway, keeping me from actually hitting the floor.

I got my chart notes from that visit, and there was no mention of any balance testing at all, let alone me nearly falling over backwards.

What is other people's experience?  If you wobble but you don't fall down, it doesn't count, or do other neuros make note of some kind or degree of balance difficulties?

She also said I had no nystagmus, but I watched her eyes as she did the follow-the-pen thing with me, and I could tell she was seeing the skip of nystagmus in my left eye, same as my vestibular therapist saw (among other things!).  It may be no big deal while tracking (what neuro-ophtha said), but shouldn't it be noted at all?  Oh, neuro-ophtha didn't note it, either, so I guess not.

I digress.  Do other people's neuros make note of loss of balance when you can catch yourself from falling?  

Thank heavens I have the reflex to catch myself, or I'd have more than the bumps and bruises I do have.  

Kathy

[CheeserNurse]

Very interesting that you're mentioning Romberg's here, because that is my #1 clinical assessment finding, that and hyperactive reflexes on my left side, right sided weakness, noted nystagmus when following the pen light, also the accomodation test where the doctor takes the pen light, holds it away from my face and brings it in closer to my nose, as well as my pupils not constricting equally with light..

Anyways, I found this website on the Romberg's

http://www.wrongdiagnosis.com/p/parry_romberg_syndrome/book-diseases-8a.htm

Funny how the first medical cause is "Multiple Sclerosis." I'm not yet Dxd, and have no idea if I will be, but here's hoping the next neuro I see in June, can help me and that a 2nd opinion will be worth it!

My Best,
Aleah

[Fluffysmom]

Thanks, I tend to agree.  It's time to see neuro #4.  I'm shooting for the big kahuna of the MS clinic and Neurology Clinic, the guy that speaks at seminars and such.  He's accepting new patients; I just need to find out what their policies and procedures are for changing from one neurologist to another, and the Clinic Manager was out of the office this week.

I will be seeing a new oto-neurologist next week, and maybe he can be of some help; he's in a different system, for one thing.  He may just know of a good neurolgist (that's not in neuro #2s office) if things don't work out with switching neuros at OHSU.

Neuro #3 definitely just saw what she wanted to see.  I'm so tired.

Tomorrow I'm going to a birthday celebration; cocktail hour at a house, out for dinner, then back to the house for a birthday cake.  I plan on having a lot of fun and forgetting about medical stuff.

Kathy

[shoshin]

I think sometimes neuros only see what they want to see. Flailing around doesn't seem like it would be normal, but some neuros seem to have a very wide definition of normal.

My balance was off for a long time before it showed up on any neuro tests. I had to go slowly and hang onto the railing on stairs. When I went back to neuro #1 shortly before I was dx'd, he proclaimed my examination was "completely normal" (although he did note a bilateral Hoffmann's and said that although my Romberg was negative, I had a tendency of swaying back and forth without falling, but apparently that counts as normal). He attributed all my problems to "hypersensitive nerves."

I went to see neuro #3 six weeks later and ended up with an MS dx. It was the neuro who changed, not me. You really need to find a neuro who is competent and actually interested in getting to the bottom of your problems. I hope you find one soon.

sho

[Wobbly]

I'll do that...I do have a drawer full of medical results and tests etc...but I haven't go the reports from the specialists... thanks

wobbly
undx

[Fluffysmom]

Yes, you can get copies of the chart notes that your MS specialist writes after each visit.

You ask for a release of information form  (sometimes they call it something else) and fill it our, saying on the form that you want copies of your chart notes and test results for you personal medical file.  You can have them sent to you at home.

If you have several visit's worth of chart notes to catch up on, they may charge you a fee; there's a limit on how much they can charge.  You can ask ahead of time if they will charge you and if so, how much it will be.

Once you fill out the form, you can request that your chart notes be sent to you after each visit.  I think the form is good for a year, though I'm not sure.

I remind them at my MS specialist's desk each visit that I want a copy of my chart notes, and that I have a release of information form on file.  They're so busy, I figure they might not remember.

I've had to re-remind them twice, tee hee.

I have a notebook full of chart notes, lab reports, MRI reports, and so on.  It sure is a lot easier to keep everything straight when I have all the information at hand.  If someone asked me "When did you see your first neurologist?" I can look it up.  That was something I WANTED to forget, as he was soooo bad....

You take care, too,

Kathy

[Wobbly]

Hi there... I have had quite a few Neuro exams too when the specialists do not write down anything about the balance...??  But the MS specialist did write down that I have a strange gait..??  hehehe...

and my Romberg was positive... thats about the only info I go on my reports... also, can I request my file from the MS Specialist... I do get copies of the letters she sends to my GP...but I wonder what she actually write on the computer on my file?  I would like to see that part...??  

take care and good luck with getting answer to this..
wobbly
undx

[Fluffysmom]

Bio, you should see the chart notes; she's really irritated with me!

She does record my subjective reports, but has pointed out that without her objective findings, they don't count.  She probably put that a little more professionally, but I'm a little irritated with her, too, right now.

I think the oto-neurologist and my vestibular therapist will help with objective reports.

I feel that way, about people maybe thinking I'm drinking because of just the situations you mentioned.  Luckily, I don't have students to worry about.

Pastor Dan, I'm glad we both quit drinking years ago!

How frustrating about your evoked potential reports!  You know i understand; you read my post about my much anticipated 3T MRIs, didn't you?

I certainly hope that they get the results to you soon.  

I'm glad you NP could catch you; my tiny MS neuro would probably drop me, if she even tried to catch me, ;o)  .

My neuro actually hasn't done a single Romberg; my previous one did.  After my LP was negative, she stopped me from swaying, had me do it over while tapping my forefinger and thumb together, then stopped me from swaying again after a few seconds.  She reported a "distractable Romberg was present".

I must contain a neuro-irritant.

I think its because I'm a little (hah) complicated and so far I've ended up with neuros that don't appreciate a challenge.  They also probably don't appreciate that I intend to be a partner in my health care.  I'll find the right doc, I know it.  Or combination of docs.

Kathy

[biowham]

Kathy, good question. Even on Romberg's, I get different opinions. I sway a lot and lose my balance but *do not* collapse, and two neuros call that "positive" and one has called it "negative." In my opinion, balance can be something subjectively reported by the patient and should be noted as such. And I don't think you have to fall down to be considered as having balance problems. I started worrying that my students this semester would start thinking I'd been drinking because of the number of times I'd turn or lean and just keep on going, having to catch myself on the nearest desk, table, chair, or wall. There have been a few times when, without something near me, I'd've just gone right on over.

Sounds like your doc is irritated with you and maybe deliberately leaving things out? Since you reported balance issues, that ought to be in your notes.

Bio

[PastorDan]

I still don't understand why supposed medical professionals are so frequently describing us as better than we know ourselves to be.  NP yesterday had to catch me when I closed my eyes in the Romberg position.  Today, I learned that my VEP and SSEP results were read, and a report dictated, but the dictation has gone missing.  Doc has to read them over.  Gee, it's only been three weeks.  Good thing I quit drinking years ago.

[Fluffysmom]

Sigh, I did ask her if I actually had to hit the floor for it to get mentioned, probably why she didn't mention any balance testing at all.  We had a very intense conversation.

My regular physical therapist didn't put it in my chart notes when I fell off a box in their gym and caught myself on an exercise bike.  I asked her why not, and she said it could be because of weakness, not balance issues.  HUH?

My vestibular physical therapist is making note of my issues; my balance issues are a result of my dizziness/vertigo.  I can hardly wait to see her chart notes.

I'm hoping my oto-neurologist will report objectively; if not, I'll ask him about what degree of unsteadiness/loss of balance is worth noting.

I can just see you, stretching up, poised on one foot's tipsy toes, trying to get something off a high shelf.  :o)

Oh, and I guess you better not do anything to get pulled over for, LOL!  At least you can drive in a straight line!  Tee hee!

Kathy

[slightlybroken]

That's the running joke I have between my husband and I. I am sometimes the driver when we go out. I can't walk a straight line even when I try. I'm in big trouble if we get pulled over. LOL

I would think they should have that kind of thing in your records. I know that when I went to the MS specialist at CC he noticed my abnormal gait right away and the lack of balance. I don't know if he put it in my charts or not. Who knows.

Some days my toes work...other days they can't hold my weight and I can't move them up. I've had several doctors comments on that. That makes it hard to walk and get on your tipsy toes (I'm short so I have to do this a lot to reach things and I can only do it on the one side).

I would ask them about it or at least the next time you go in ask them when you fall over if that is normal and bring attention to it. I know that my PCP was just discussing this and that's when she wrote me a RX for a cane.

Take Care :)