Introduction and any neuro Doctors out there with a sence of humor?

Hi, my name is TG, 50yr old female.

My list of inconclusive or normal tests started four years ago.
It was like my right leg wasn't even there. No big deal as this has happened a few times in my life.
Except it didn't get better even giving it a couple weeks. It felt like my leg was huge and heavy like an elephant's leg . couldn't move leg or foot.

Doctor said I had no ankle reflex and at my age ( 46 then) was concerned about MS. She ordered am MRI that was denied. Doctor referred me to a neurologist. another 6 week wait.

1st MRI came back normal with age related white spots, no stroke or tumors. I said good so it's not MS. Neurologist said it might be but at my age it was not likely.
Definitely something neurological going on. ok i think, it's fluke thing and i won't be back.

back to Neurologist in 4 months. right half of face and head feeling like it was in a heavy iron mask and helmet. Doctor say that's normal for people with MS. I said but I don't have MS. He said 'Lets wait and see'. come back in 3 months.

MRI came back with " only age related narrowing of small arteries and spots".
I'm getting concerned because my right leg works sometimes and sometimes not. But it never got all the way back to normal. it is much weaker.Can hardly get up from floor and lifting from knees tilts me over.  

Get 2nd option and a EMG test. That neurologist says good news is you don't have a pinched nerve and the test was normal. the bad news is we don't know what is causing the problem.  wait and see.

this is stating to get to my wry humor. I know i just failed the heel to toe by looking like a drunk. ( I don't drink )  holding arms out straight always makes the right arm tremor.

Work is increasingly hard. spill things all over because of strange tremor in arm. lifting is more and more difficult and I'm way past exhausted by noon. so I change to a mostly desk job.

Last years MRI " more white spots but any 10 people off the street your age would have them too."
neurologist said after the exam, " you better not get stopped by the police."  do you really think? geez, I can't walk heel to toe, can't stand with feet together, can't to the finger to nose well.

Last visit I was told to walk as much as I can for as long as i can. I know I have trouble getting up from chairs now. I do stretching exercises and about 15 other ones a PT taught me. just to try to keep the ability to walk. But then there are days I walk good. not so many days any more.

Think I should find a new Neurologist. He has me coming back every 3 months. I don't like doctors nor wasting money. that is all i am doing, going to the doctor and spending money, i don't have, on tests that are worthless.

I know I have ataxia and now have a tremor in my left leg at times that makes me look real stupid. and sometimes the tremor starts in my leg or ankle maybe and spreads all the way up to by buttocks. sometimes just picking up a cup of DECAF coffee means i nearly spill it all over.

inconclusive??? something isn't right !  I am getting a bit scared at times and frustrated.  no using a cane isn't helpful. ok, so it helps me keep my balance till i drop it. it is way to much effort to pick it back up.

I have looked at assistance dogs but I don't have a diagnoses. at lest 5 yr waiting list. at this rate I'm not sure what will be happening in five years.

I go back to the Neurologist on may 10th. wish he would crack a smile or a laugh once in a while. I am wondering why I keep going back, except surely, there is something to help this tremor in my leg. It is my 'good leg'.

Sorry, guess i really needed to vent, you were the unlucky ones to hear , ah read, it.

[Lulu54]

Hi and welcome.  This is as good a place as any other place to vent.  We're actually pretty good listeners, too!

Neuros are notoriously serious - I understand at their conventions very few of them attend the social activities.  They are not known for their sense of humor with patients, but it is rumored that ocassionally they can crack a smile.  

Don't let any one tell you that you are too old for MS. I wasn't dx'd until 54.  I didn't even think about it being  a problem until I was 54.    We have people here that didn't learn they had MS until being older.  There appears to be no "too young" or "too old" for getting this MiSerable disease.


Is the neuro you are seeing an MS specialist ?  You might want to see one of those for a second opinion.  If your neuro has you coming every 3 months, that really is good.  Usually people are told to come back in 6 months or a year.  

Good luck with this next appt - hang in there for the answers.  You deserve to know.

be well, Lulu

[rendean]

Welcome to the forum! Sorry you've had such a runaround with the neuros!

Have you seen our Health Pages located next to the yellow icon at the right hand side of the page? They contain a wealth of information including preparing for a neuro appointment, perhaps there is a nugget or two of information that may help even though you've been seen several times.

As for neuros with a sense of humor, my MS neuro has a very dry, witty sense of humor. Can't say the same for my general neuro but one out of two isn't bad considering the specialty. My MS neuro always gets a laugh or two out of me even when I'm feeling my lousiest (sp).

Wishing you luck with your next appointment. Let us know how things go.

Ren

[rendean]

If you're up for "gallows humor" go to my profile and look at the cartoon with the angel. It's sadly very funny but it does have a dark edge to you.

Ren

[gypcwmn]

I am 49 was DX 3weeks ago so age has nothing to do with it.  Best of luck Linda

[Nancy T]

Sounds like your neuro is keeping a close eye on you. Three-month waits may sound like a lot, but it's short in neurology-time.

Have they done a spinal tap or evoked potentials testing, to help rule MS in or out?

Unfortunately the neuro diseases sometimes take years to diagnose as they wait and see how things turn out.

I agree with Lulu about seeing an MS specialist if possible.

I guess neurologists have a variety of personalities, like other doctors (and people in general). My second neuro was actually a great joker, very funny and nice and personable.

Good luck--you may just have to reconcile yourself to waiting a long time for a diagnosis. Must be very difficult when it's affecting your life so much. Get second and third opinions if you can.

[thornygates]

Thanks for the great welcome and support.

No the neuro isn't a MS specialist. Not sure we have one here.  

maybe seeing the neuro  every 3 months is good, but it tells me there is more he is seeing wrong. yet without a diagnosis he won't tell me what i can do about or prescribe meds to help with symptoms. just seems like I'm throwing money out the window.

Anyway, I have been reading all over the site and found some great info. I will be prepared for my appointment.  

Decided it is past time for me to make a binder of all my medical info and maybe can figure something out that way.  Don't know why I haven't done so already. Made one for spouse when they were ill and for my mom.

maybe been wanting to think all this is a fluke thing and will go away.  4 years and decline in ability, guess it isn't going away. I just have to keep working and when that gets threatened i get kinda nuts.  Sometimes, i don't care about getting a diagnosis - just do something about what is going on so i can get back to what i need to do.

thanks Ren for the cartoon - had a good laugh. Maybe i should print it and hang it up. May help with this bad attitude right now.

[Guitar_grrrl]

Thorny -

I'd definitely get a 2nd opinion!  This guy doesn't sound right.  I was diagnosed at age 50 with only white spots in my brain, a negative LP, a long history, and a WAY abnormal neuro exam.  My neuro is 76 years old and has seen it all!  He's also funny as he!!.  I'm getting a second opinion anyway just to have a 2nd set of brains looking at the big picture.

Cheers, and Good Luck,
Guitar_grrrl
Dx 2009
on Tysabri

[asummers2112]

I just read the title and had to read!!!  I have epilepsy and have been having several symptoms of MS (appointment next week) so I have met my fare share of neuros in my life.  NO!!!  There is no such thing as a nuerologist with a sense of humor.  Most that I have delt w/, as well, think that they are smarter than me so there is no need to listen to me...  they have read all the old dusty books.  They know what is going on with me.

I have found one here in Omaha that, as well, has NO sense of humor but he listens when I talk so I love him!!

I am so sorry that you are having so many issues!  I hope you can find someone you like real soon!!  I was cursed at birth when it comes to doctors...  I have never found an 'everything' doctor that I thought took me seriously and I alway seem to find the neurologists from hell until now!!  I know how frustrating it is.
The very, very best of luck to you!!

[Celery47]

Hi TG!  I just wanted to say hi, and wish you luck :)  I can well understand why you are frustrated!  Oh, dear, what you're saying about your neuro - this is something I've been wondering about lately myself.  I've always figured, the most important thing is for the neuro to be really sharp and competent, and know a whole lot about the brain... but more and more lately I've been thinking that, well, they are care-givers too!  They should have to be a least a LITTLE human...  I say, dump this neuro :P

My current neurologist is supposed to be really, really smart, and from what I've seen I totally believe it, but oh my god he is a total robot!  LOL - or maybe it's like I'M the robot from his perspective, because I feel like he treats me like just a problem to solve, you know, without a life or feelings...  Oh dear.  But, it sounds like I've got plenty of company in this problem!  I am sorry that it sounds like you have a robot-neuro too!  

Well, I hope you keep posting here!  The folks here are great :)  Again, I'll be thinking of you, and wishing you lots and lots of luck!

Best to you -
Louey

[Audrey_M]

Thorny:

I can empathize with you completely.

This forum is a great place to learn, commiserate and get support. Keep coming back- people will look out for you.

My experience so far hasn't brought me in touch with a neuro with a sense of humor. First few were very dry and I have to say that the first one was a complete scatter brain. New one (one visit) was more open and compassionate than the others, yet I did not detect a sense of humor.

Your idea to pull together all of your medical records is a good one, especially with the fragmented health care system. It can help you put together a timeline, but more importantly look at what tests have and have not been done. Contact all doctors you have seen and request a copy of your medical records and get copies/disks of any scans and radiologists reports. As you use this forum more often, you will find a wealth of information about protocols for testing, which can be helpful in recognizing when protocols have not been followed or other tests that might lead to a diagnosis.

My 1st neuro was so focused on Meniere's disease that he ordered an CT of the intercranial area only. Worthless. His notes on various dates indicated certain tests that he would order, but he never did. He concluded that my symptoms not related to balance "were of different etiologies". I wish that I had requested copies of all reports to my PCP; if I had seen some of those things earlier, I would have dropped him much sooner.

Wish you well and keep on keepin' on!

Audrey

[Ufrustrated2]

>>ntroduction and any neuro Doctors out there with a sence of humor?

hmm, that question in itself is humorous.

did you see the movie "malice" with alec baldwin, where his charactre says, 'i am god' ?

LOL there ya go

[Adnvwsti]

Unfortunately, Ufrustrated2 is absolutely right about that neuro attitude.  Many of them do regard themselves as not being on the same level as the lower classes, and anyone who isn't a neuro is in the lower classes:)  But I agree with you, too, on this 3 month wait game.  Is it a neuro who is watching his patient closely, or is it as you suspect, a neuro who is just picking up the money every 3 months.  I don't know where you live in the country, but Dallas has a neuro-specialist hospital here that is specifically for MS.  The doctors in it have treated royalty from around the world.  If you have good insurance and can afford to get here, please come!  You may have to wait a year to get an appt.,but right now, you're waiting year after year to be told the same stuff.  I really hope you find someone who can resolve these questions for you right away.  Your ideas are fantastic.  So now, you'll be the proactive one.  And there are neuros with a sense of humor.  Both of mine have had a very wry, witty sense of humor that I've enjoyed greatly.  One was an old Texas cowboy-type, and the other is British.  Really, good luck to you!  Keep us posted on how it's going!  jo

[asummers2112]

I just happen to think...  
I posted earlier that I have epilepsy so I've seen lots of neurologists.  My daughter has recently started having seizures too.

I called the office where my neuro works and talked to the lady that works the front desk and told her.... I really like that my dr listens to me, but he has NO personalty. (I think my daughter would feel intimidated by him)  I asked her if there was a dr in the office with a more appealing personality...  she told me about a few of the doctors.
I got my daughter an appointment w/ another one of the neuros and he is so sweet.  He is like a grampa.  He is the perfect doctor for her!!

Call a neurology office where there are several doctors working and talk to one of the receptionists working there.  If anyone has the skinny on the drs they do!!

Again, only the very best wishes to you!!

[thornygates]

Thanks y'all for all the comments and good suggestions. I have a couple names of neurologists that a friend suggested. She works in the health care field and has contact with drs and nurses and all. I'm going to check them out and see if i can get in, but there is at lest a 6 month waiting list for them.

only a week to go till my next appointment. Maybe this time he will have something to help with the walking better. sigh.

thought maybe i could ask about a handicap tag. Have a real hard time getting groceries. I don't eat much but my little dog needs to eat. and going to the gas station where it isn't much walking is fine but limited and costly way to shop.  good walking days are far between anymore.
perhaps I'm just being wimpy. I have friends that are 10 to 18 years older then me that out walk me like crazy.

grrrr - learned that from my dog. growl then smile and be happy as you keep going on.