Allow me to rant for a moment - I am PI**ED off at wife's neurologist

A little background always help, so here is a brief overview:

I posted here some weeks back that my wife was diagnosed with Parkinson's disease. Follow up tests were done to rule out other things. Our family Dr (awesome guy) pretty much agreed with the neurologist on all counts, including the pronounced weakness on her right side.

First, the neuro gave her wrong dosage of amantadine. We finally got all that worked out after about 3 days of phone tag (they don't answer their phone, you have to leave a message). We also were waiting for 2 weeks to get the paperwork for the blood tests he wanted done to be sent to our family dr (our next door neighboor and best friend is our family dr's nurse, and she had a helluva time getting through to them as well).

Lastly and MOST important to what I am ranting about is - my wife has had these symptoms since before she met me. They just were nothing bad enough she ever sought treatment for them (head bobbing, shaking hand, etc). For close to or longer than 10 years. We didn't see a dr until her mom called me after her last visit there and told me it seemed really bad and maybe something was wrong. In 8 years that is the first time her mother ever has called my cell phone to talk to me.

TODAY: I came home from work early (and I have worked from home a lot these last few weeks) as my wife was upset and on verge of tears. She was having a really hard time walking and her hand (right) was locking up more than usual.

So I called the dr office. While I was in the store they called back (wife was in car as she didn't want to go walking around but did want to get out of house). And what did the nurse tell her?

"Oh, you can't be having issues like that now, it takes 10-15 years before people get those symptoms. Must be something else, just go to the emergency room."

So their basic view is - my wife started having parkinson's the day they diagnosed her.

WTF??? Friends of hers and family have all said this explains to them things they have seen for years. A gradual progression of head shaking (which they all noticed) and hand shaking and such. Most all thought it was a nervous tick - until it got too bad. OH - and we told the DR this when we first saw him.

What did we want? For him to see her and take her off the stage 1 meds and put her on something else (and thanks to some DU'ers who passed along some OTC meds, I have ordered some finally since the ones he gave only make her weak and tired). If not new meds, at least have her come in and answer some questions.

Oh yeah, I am changing doctors. She needs help walking up the damned steps, at 35, and all they can do is blow her off? Fuck them. She does not want to co-pay $150 to go to an emergency room when she has a doctor she can see for $10/copay - and when they already know her condition.

:rant:

I wish you both the best.

I want to throttle the bastards at that office.

How hard is to call and listen? Hell, I'd pay in a second to have him see her and see for himself the state she is in.

but I know why neurologists act that way. My neurologist told me.

He had sent me to a neurosurgeon who I praised highly. He listened, answered questions clearly without being condescending.

My almost ex-neurologist said he heard that about him a lot and there was only 1 explanation. He said all neurologists and neurosurgeons take a required class called How to be Demeaning and Insulting to Patients 101. My neurosurgeon must have skipped the class. I suggested he himself had surely aced it and he admitted he was an A student in that subject.

I swear they are an odd lot. I was telling my internist that I really have trouble getting along with neurologists and she told me they were wired differently, that it really wasn't me. On another occasion a nurse practitioner said nearly the same thing.

I could tell you neurologist horror stories much like yours and worse. I am very sorry this happened. It is a hard, vulnerable time anyway and that kind of treatment makes it all the worse. They can be so dismissive and people should not have their issues dismissed.
May you find a doctor who skipped or failed the How to be Demeaning and Insulting to Patients 101 and may your wife's symptoms ease. There really is so much research into Parkinson's, may answers be found soon.

Not suggesting you try this but here is a search page regarding studies of the nicotine patch and Parkinson's symptoms. Take a look. A family friend decided to try it, had no problems and found some real improvement.
I was allergic to the patch (when I quit smoking) so I know there can be problems.
http://www.google.com/search?hl=en&sa=X&oi=spell&resnum=0&ct=result&cd=1&q=Parkinson%27s+nicotine+patch&spell=1

fascinating thing I've seen in a long time. I'm a nurse and work in a nursing home and have dealt with Parkinson's patients for years. I wonder what about the nicotine is producing the neuro-transmitter improvements. This could be a break through in treatment. Even a patch for Sinemet delivery would be a cool invention. Keeping the blood levels constant is a round the clock med taking regimen. The freezing up and tremoring are a real PIA.

is fascinating and increasingly studied. One thing I recall specifically about Parkinson's is that nicotine stimulates dopamine release in the substantia nigra, and that is an area progressively destroyed in Parkinson's disease.

However I've also read that nicotine more or less fine-tunes or stabilizes the neurotransmitter system since it also helps some disorders that are related to an excess of dopamine.

Here is a theory about how it helps:
http://www.biopsychiatry.com/nicotine/neuroprotective.html

Page 8 of this site lists many neurotransmitters affected by nicotine. You might be able to relate it to how it helps, I don't know enough.
http://ethesis.helsinki.fi/julkaisut/mat/farma/vk/gaddnas/longterm.pdf

I first became attentive to nicotine when working with schizophrenic patients a decade ago+ and started looking into it. Even then there was quite a bit of information and drug companies trying to find drugs that would have similar effects on the receptors.

There are many more studies now and a wide range of disorders it is found to help. Besides neuro-degenerative disorders it helps with ulcerative colitis, Tourette's Syndrome, neurogenic pain, psychiatric disorders and several issues that affect the aging brain.

They have known for a long time that there is a powerful reverse relationship between smoking and Parkinson's...the longer and more people smoked the lower the chance of Parkinson's. Something like a 70% lower chance.

Obviously smoking is bad for people and except for retrospective studies the low dose patch is always used. (It seems to require high dose intermittent, smoking, or a constant low dose, the patch) But I'll tell you this gave me pause in judging people who smoke. I mean really who knows if some people feel drawn by a "higher" part of themselves to smoke. Who knows. I don't.

But patch therapy is very promising for symptom reduction in many disorders.

i would have read through it but it looks pretty long....I'll save it and go back later. I worked as an attendant in our state mental hospital during the 70's and watched how they loved to smoke. I've also noticed how the drugs for schizophrenia give Parkinson's symptoms. Then I later noticed how the dopamine gave patient's hallucinations. Brain chemistry has always interested me.

off, too. I'm glad you're finding another doctor and I hope the next one give her better treatment.

I do a lot of customer service (internal to the company as I interface with varied lines of business) and there is no way in hell I would just brush off people like that.

And that is in the banking industry - this is healthcare, life and death and a lot more important than the things I deal with.

If he were my employee, I would fire his ass on the spot. And I guess I did in some ways :)

dramatically. I know two people who have had it done-one who was in his twenties with dramatic results and the other who is 70 with some improvement, though he has more trouble with his meds than anything else.

Been googling everything under the sun about parkinson's, and we have a support group we are meeting with here this month (they did not have their May meeting).

This guy basically said, and I am quoting here "You have parkinson's. There is no cure but we can treat the symptoms. You have a lot of weakness on right side we want to look into further, see you in 3 months and we will check your progress."

And all I want is a phone call with some answers. How hard can that be?

insurance, check to see if they have case managers. Usually these are RNs who don't put up with the doctor's crap and will help you get the answers you need.

Pittsburgh. They were one of the first, if not the first, to do it.

in just going to the doc's office and demanding to be seen...... of course I had crying wailing children - and one look from a nurse and they rapidly "took them back" -

I only had to do that 3 times. (Severe hives, a streptococcus infection, and I forget the other thing - dang I hate getting old.)

The thing is - if you're standing in front of them - they can't ignore you.

I'm sorry for you and your wife's difficulty. Maybe changing docs is in order, though.

Your wife deserves a caring and understanding doctor.

or copy the one you've written so that the doctor's office knows exactly why you are leaving. If you don't do this, they'll never know that it was their attitude that made you go.

But I think I will write it tonight and fax it over!

We have had it with their phone messages:
Example - when you call and want to talk to a nurse, it goes to voicemail:
"Leave your name, First and last, and if you do not spell your last name we cannot return the call, we need a daytime phone number..blah...we will return your call in 24-48 hours"

no one deserves that kind of treatment yet that is exactly what we get for the most part

good on you for demanding better
just like all else in this world you have to be willing to speak up and not accept poor and undeserved treatment

best wishes straight
i know its scary but at least she has a good chance with such a wonderful advocate as you are

We should not have to fight so hard for good medical care. I thought this was America. I am so sorry about your wife. She is lucky to have you to fight for her.

I would suggest though that you check with your insurance and make sure they don't treat it as an existing condition and not cover it. Good Luck to both of you.

Most of the doctors out there are alright, but sadly once in awhile you run into a real asshole. I hope you find one who is much better and willing to work with you.

Good luck to you, and remember that Parkinson's isn't a death sentence. I knew a vetranarian who had Parkinsons, and he worked, and operated, until he was in his eighties. My mom has Parkinson's, diagnosed a few years back, and she is doing well, is active, out and about at 76 yo. One thing that she has found that has helped with muscle issues is Tai Chi. She works out every day religiously, and it has really helped in terms of muscle control and lessening muscle spasms.

And here's hoping you find a better doctor, one who is willing to listen and talk *with* you as opposed to *at* you.

Damn good man, ALWAYS available if we need him, and my wife would not consider ever going to anyone else as he is just awesome. I can't think of a better dr I have ever had in my 40 years of life myself.

Good dr's to me are the norm, the bads one though really get my goat :)

First, I would read everything I could, then I would find who is the best medical center near
you in treating Parkinson's and I would either go there or e-mail them and ask them to recommend
someone close to you. The leaders doing research network at conferences just like everybody
else. Or I would google and see what articles on Parkinson's patients around the country exist.

Good luck to both of you.

I got the name of three dr's today at Ohio State University that specialize in it. Monday I am calling Family dr so he can refer me to them (for insurance purposes, need the referral).

On the bright side, I don't think I could find a worse dr office....

you should be able to search under Parkinson's, they will have the doctor's name and you
can read about them now. They should be able to tell you about their treatment for
Parkinson's patients and maybe even have a blog for Parkinson's patients and their families.

Sometimes I am good on the web, and sometimes I am not. Great to have DU'ers here with fresh ideas!

this way you can get a virtual tour before you go!

who don't listen, don't care, and don't think. :grr:

I've had a bunch of those doctors too. You have to be willing to change doctors. Please don't put up with the bad ones.

I hope your wife stabilizes and does well.

variance between neurologists. Some specialists think you are so lucky just to be seen by them that you should feel fortunate and just be glad for that. I also know, again for my own experience, that a lot of neurological meds have terrible side effects for the first month or so, but they gradually do get tolerable. Tiredness and weakness do seem to be the worst and most common ones too.

I do hope you can find some competent help soon. There is a large on line support community that I hope you will avail yourself of, at least you will then know what is going on. I sure hope things work out well for Mrs. Story.

I've had that too. Pissed me off as well. I'll never go back to that obgyn.

can go see. I am so sorry you are having to go through with all of this. I wish the best for her. My dad has Parkinson's and he is 80, and it hasn't gotten too bad yet.

You have a right to have your questions answered--all of them.. You have a right to expect your specialist, the neurologist, to take in ALL the pertinenent history--not just what he/she chooses to acknowledge and which meshes to his/her treatment plan.

You have not received that and I am sorry for you and your wife. Fortunately, you are insured and have options.

DEMAND to see another neurologist. And, best wishes to you both.

for an answer and demand to speak to her Dr. yourself.. If all else fails, go down to the office and start talking loud in the waiting room, that should do it.... If this should ever happen again to your wife....

I am very lucky to have a very highly-regarded doctor as a brother-in-law to whom we turn for second and third opinions.

God bless you both.

I'll just leave a couple of hugs here for you and your wife.

:hug: :hug:

So thank you!

And I want you to know that there are good, caring neurologists out there. It may take some searching but they are there.

My husband has secondary-progressive MS He went through a period when he was started to decline rapidly. (He rallied thank God) He had pain for something, I forget what, he was prescribed vicodin. He hates taking pills, so he took them less than prescribed and then threw the rest out. He was telling me what an ass this neurologist was, so I made sure I went to his next appointment. My husbands pain had returned, and he asked for more vicodin. (Because he's not a doctor, and he doesn't know alternatives.) The Doc acting like he was drug-seeking. Completely inappropriate. He did a shitty neuro assessment as well (I'm a nurse so I know) NEVER ordered an MRI, did not keep up on the rapidly changes going on in MS treatments at that time.. on and on.

The one we have now, (Number three BTW) is not only a patient advocate, but she makes sure she knows her shit. She knows how to work within the insurance company system. She goes to bat for him when they turn something down. She'll get an MRI for ANY new symptom. We've gone to a couple of her speaking engagements. She's lovely, and personable and shows that she cares. My husband was on a form a chemotherapy for MS for a while, which dumped his white cell count. She was so tough with him, making sure he understood exactly what that meant. (He calls her "Dr Witch" because she doesn't take any shit from him, and encourages him to keep moving, keep trying, keep living-- she never lets him give in or give up. Neither do I, but that's another story)

So here's a hug for you and your wife, I know how hard it can be. All I can do is send good thoughts and vibes. I'm glad you're shit canning that doctor. Your wife and you, deserve better


:hug:

on the subject of Parkinson's? You will find many helpful, understanding people to communicate with who are going through the same bad times that you are experiencing -- some even worse times, if that's any consolation.

Have you been to The Cleveland Clinic? I know of several decent Neurologists there.

Here are a few support forums/messageboards to look into.

Healthboards:

http://www.healthboards.com/boards/forumdisplay.php?f=101&jump=Jump+to+Board

Also: BrainTalk Communities

http://brain.hastypastry.net/forums/forumdisplay.php?f=199

Much info on both of them.