The neurologist can stick this...

[flutterbee]

...where the sun don't shine.

I had an ENG done today by an audiologist about my balance issues. (Don't know what ENG stands for.) Anyway, the test found that there is an area of weakness in my left vestibular (still have to look that up) and the cerebellum (that has atrophied some) isn't processing the information correctly.

IOW, I have balance issues. (Yeah, I already knew that. But, now I have PROOF.) Like the kind that the neurologist said I didn't have because I went through 'elaborate measure', i.e., putting my hand out, to catch myself. I'd like to give him a piece of my mind. And maybe a foot up his ..... ahem.

In other news, I was feeling very sorry for myself last night. Exhausted, in pain, emotional. Called my mom and said I just want someone to take care of me. I'm tired of going from specialist to specialist. I'm just going to stop. Wait to hear from the NIH. If that's a no go, then either Mayo or Cleveland Clinic. If those are no go's than go from there. Every doctor I have seen says it appears to be systemic inflammatory disease. Most of those and the autoimmune disorders are treated with the same medications. I don't see why we can't just try the stupid medications and see what happens. It's done in psychiatry ALL the time. I have the symptoms. I don't care what the blood work shows. NOTHING in my bloodwork or anything else even hinted at such severe heart disease. Blood work isn't the end all, be all. Even the endocrinologist said that a negative test result doesn't necessarily mean it's negative; that nothing is 100%. So, I'm going to talk to my doctor about this and see if she'll talk to the rheumy.

Oh. And the audiologist, besides giving me some exercises to help with the balance issues, told me that it's really important to get out and exercise...even if I can only walk 3 blocks and even if it hurts. I just looked at her and said, "Ok." I called my GP's office after and told the receptionist/secretary/nurse what the audiologist said and she laughed. Obviously, the audiologist doesn't understand the difference between a pain level of 3 and OH MY FREAKING GOSH.

So, that's that. I'd really like to call the neurologist and say neener neener neener.

 

[house of cards]

I would do just that, call the neuro. Maybe he will work harder at figuring out your problem when he realizes HE was wrong.

 

[Hound dog]

I wouldn't just call him, if you have the written report.....I'd walk it into his office and hand it to him.

Reminds me of all those docs that told me there was nothing at all wrong with Travis. One pediatrician doctor in particular. Soon as I started getting reports back, especially the MRI that showed extensive brain damage, I made an appointment just to shove it in the jerks face.

I got the pleasure of seeing shock, amazement, and total humilliation. Priceless.

Probably would've never considered it if he hadn't been such a jerk when I'd asked him for referrals. (which I wound up making appoints with the specialists without anyway)

Yet another piece of the puzzle has been documented. Hold onto it.

Hugs

 

[Jena]

Heather

I agree totally in regards to how to handle the dr. I'm sorry your upset and having such a rough time.

just sending you hugs............

 

[timer lady]

Heather,

Neurologists are some of the most arrogant people. I doubt he'd even read your written report (I've dealt with one too many neuro docs in my lifetime as has my family with all the neuro issues in my family). Having said that, you find one neurologist who listens you hang onto him/her. I have a good neuro doctor here in town (not at Mayo) & he's my go to guy. He even walked me out to my car last time I saw him because of the rain & the slippery sidewalks.

I'm glad you're done running all over the place. If you have a team (your GP is a sweetie) of the right doctors, it's more efficient & you get treated. That's the point here.

Keeping fingers crossed that NIH still comes through for you.

 

[susiestar]

Heather,

Linda has probably hit it on the nose. The doctor wouldn't read it IF he even saw it. I know that I have had letters to my GPactually intercepted by a nurse and thrown away. I had a copy, and eventually the nurse (who told me that all I needed was a psychiatric hospital because I was shizophrenic!!!) got fired. BUt she was the nurse.

find a new neuro, if at all possible - one who will LISTEN.

Sending hugs. I am sorry you are having these problems, but at least you know what some of them are now? I usually find that somewhat helpful.

 

[mrscatinthehat]

At least you have one answer. I know it is small in the grand scheme of things but it is an answer at least.

hugs
beth

 

[TerryJ2]

I'd really like to call the neurologist and say neener neener neener.

Go for it!

But I think Linda is right. He wouldn't read it.

 

[Marguerite]

Heather, your balance problem sounds very familiar. I don't know the full details of that test but if it says you have a problem with your vestibular system, there could be something worth trying. I had balance problems for years, I thought it was part of my neurological problems. Then just before we were due to head off to New Zealand last year, it got suddenly worse with nausea, dizziness etc. It was worse when I moved; if I closed my eyes and moved, I'd fall over. It was a worry, the thought of going on holidays in this state.

I've had some difficult neurologists in the past. Even competent neurologists can be arrogant. They also won't believe in anything they can't measure or touch. And I've had some great neurologists, especially one old professor. My current neurologist was taught by the old professor.

So I went to my neurologist, he got me squeezed in for an emergency consult. He lay me down on his couch, tipped me this way and that then chuckled. "You've got something every neurologist dreams of in a patient," he explained. It's something we can fix really easily, really quickly and it can be quite spectacular."
He explained how the vestibular system works - little hairs that are connected to nerve cells which tell us when we lean this way or that according to how the fluid in the semi-circular canals moves against those little hairs. He told me that sometimes little crystals break loose and get where they shouldn't and bump against those hairs. When that happens it sends a false signal that you've changed position, when you haven't. The treatment is a matter of an expert tipping you this way or that, depending on exactly where the problem is. No fancy tests needed to identify it, but it does need to be an expert. Now remember, I had been seen by many neurologists over the years and they never did a thing for my balance problem until it got bad enough for my current bloke to say, "OK, let's deal with it now."

The day I saw my neurologist, he explained all this while he did something called an Epley's Manouvre. Look it up on Google, you will find some useful info.

I needed a couple of sessions, he had me in three times over the ten day period before we left to go on holiday. After the first session I knew I'd be OK to travel. After the second the problem was better than it had been for 20 years. The third - it was just to see how I was going, he did one final Epley's to make sure. I've not needed another manouvre since.

I'm not saying that this is what is wrong with you; but this IS fairly common so the probability is high enough to at least ask your GP when you go for a referral to a new neurologist. Which reminds me - the condition I had was called benign positional nystagmus.

If this is what you have, and if your neurologist hasn't thought of it (maybe too simple) then that is another reason to go elsewhere. The ENG finding could be useful and from what I understand, could also be explained by this. But a doctor may want to make sure it's not something nastier. Although it is IS something nastier, the Epley's wouldn't work.

I hope you can get this sorted.

Marg