Another waste of time

[paul318]

I have just got back from my latest neuro appointment, it was a waste of time. I am still none the wiser as to what is wrong with me. I didn't help matters as my nerves got the better of me. I have seen so many neurologists and been treated badly by a few of them, that I go to pieces at the sight of a white coat! This is what happened this morning. I was far worse than I normally was. I couldn't get control. I could feel myself hyperventilating as soon as I walked into the neuro's office. Unfortunately stress exacerbates my symptoms and makes it look as if I am putting it on this in turn makes them suspect my problems are psychological. I cannot win.

I didn't prepare anything, which was a bad move. It all came out like verbal diarrhoea and I wasn't at all coherent in how I described my problems. She did an examination but was very quick. My head was in a whirl and I struggled to keep up with her instructions, she then got a little impatient with me which only made matters worse. I had a number of involuntary movements which she thought was because I was scared! The nurse had seen these before I got into see the neuro, and I explained that this was part of my condition. She pointed this out to the neuro, but when I had them again she still assumed that it was down to nervousness! :-x

She didn't do a hoffman's sign, jaw jerk or a babinski sign, unless running the handle of her hammer down the outside of my foot was it. I was just in too much of a daze to challenge her. She did say I had balance problems, but didn't know what the cause was.

It looks as if I will always be stuck in limbo, that is unless I can learn to present myself better. I feel so down and alone and feel like giving up. I think I will give all doctors a very wide berth when it comes to this particular problem in the future. My other option is to go out for a long walk, without my stick, until I have a fall and injure myself. They may then make them take more notice.

Paul

 

[Geo]

Well Paul its like ive said many times ,we are in a Zone of our Own. We have a Rare Disease and we dont fit into the Box . Learning to cope the best way we can . You can spend all your money looking for answers and get none . I was told i would problably die of something other than PLS. So i watch all the rest(Cholesterol etc.) and just try to Cope . Next time you go be sure to take a list of questions you make up before hand or printouts from the internet . They hate these ,it makes you look like a smart A_ _. Geo

 

[paul318]

Hi Geo,

I've taken in a list of questions and symptoms before. They just assume that I have gone on the internet to find symptoms to act out! I cannot win. I will be reluctant to go to any other neuro appointments my doctor arranges. In fact, I think I'll steer well clear. Most neurological conditions they cannot cure anyhow, so even a diagnosis may not help much. It just would mean more access to support, knowing what to expect in the future, and feeling I belong somewhere. I know it may sound silly but uncertainty is hard to deal with.

Fortunately, we have a national health service here in the UK, so appointments are free (paid in our taxes). It isn't perfect, but at least I don't have to worry about any health care bills!

Best Wishes,

Paul

 

[BLPhill]

Hi Paul

Your story sounds familiar. I cannot even tell you how many drs and neuro's I had to see! My diagnosis was a long time coming, two and a half years it took these idiots. My first diagnosed was pls 09/08 that was changed to umn dominate als 02/09, although I still do not show any area of denervation, they are still calling it als. One dr even wrote in his report that I was drunk due to slurred speech and falling down. The punch line to that is, I don't drink.

You are going to come across a good dr who will know what you have going on. It will be nerve racking, but we have to push on. So pull yourself together, get your list of questions going on and push on.

Take Care

 

[BethU]

Oh, how I hate the smugness of those who assume real symptoms are a sign of nervousness or some kind of moral failure.

Please don't give up on neurologists, Paul. Some of them are incapable of understanding what normal people go through when they are in limbo with a frightening diagnosis looming, but others do understand.

Geo has very good advice ... it's best to write things down before hand, which you already know. Sometimes if you can narrow it down to the half dozen worst symptoms, that helps with impatient doctors ... although others say you need to give the doctor as full a picture as possible. But in my own case, I used to write timelines, and I ended up with a lot of inconsequential things in there, because some symptoms were fleeting. Very disturbing for the few days or weeks I experienced them, but they went away. So I've learned to boil it down.

The problem, of course, is that as laymen, we don't know what's an important symptom and what's not. In any case, keep it to one page, with bullet points or numbers. Make it as easy to read as possible. Pretend you're explaining it to a 12-year-old, which should be about right for most neurologists. :evil:

This sounds like a really bad experience with a very unsympathetic doctor, but keep trying. It's your body and your life, and you deserve answers.

P.S. Running the handle of her hammer down the outside edge of your foot was the Babinski.

 

[olly]

paul,i am so disapointed for you. i was really hoping for a good result from this appointment.
please please dont give up,i and many others have been in the same position and know exactly what you are going through.

she could see the myoclonus and balance problems...........cant these neuro's add up .
its obvious theres something wrong,in time i know it will come to light.
take time out and see how you get on.

dont even get me started on the nhs!.............too late.
we may pay for it out of our taxes but the nhs is a far cry from what it used to be.
people are dying because its such a sham,the hospitals are filthy and care is jepordised because the hospitals are upto there eyes in debt.
yes others like in the usa have to pay through private insurance but there hospitals and care is much better than ours.
if i could afford to go private i would,sad to say but even in health care money talks.
i know as i know of friends who are private.

maybe if you paid for a private neuro appointment it would be better,i know it would as you are paying so they have to take your concerns seriously.
its about £50+ for a private consultation.

i thought the babinski sign was were they do it down the centre of the under foot.
i had it done down my inner foot (side) with my leg slightly bent,this made my calf quiver violently and was told it showed i had hypotonia in that lower leg.

keep your spirits up paul,we all care and are here for you

 

[BethU]

Caroline ... I've had the Babinski down the center and down the side. I think they were both for Babinski, but I'm not sure ...

 

[paul318]

Thank you all for your words of encouragement. I don't really know what to do next. Getting my doctor to refer me to yet another neurologist wouldn't be easy, and all the while I get into such a state it is unlikely that it would be any good.

One of the problems I had was that by the time I had walked to the bus stop, travelled, walked from the bus to my appointment, I was already in quite a state. I then had to wait three quarters of an hour for the appointment. So I was already struggling before I went in. I think she may have been rushing me because she was running behind schedule. What ever her reasons, she was very quick and gave me little time to get comfortable. There was no time to rest between the tests she did when I was walking standing, hopping, walking on my heels etc. When my physiotherapist did these things she gave me time to rest in between. I think the nurse could see I was struggling and she did try speaking up for me, but to no avail.


I have tried the babinski on myself (I know it isn't a good idea as I might be doing it wrong), my right side seems to be positive. my toes spread out and my great toe goes back towards my body. I have tried the Hoffman's sign too. All is ok on the right side, but when I do it on my left side the top of my thumb flexes.


I could go private Caroline, but even that doesn't always guarantee you will get treated better. I met a woman recently who had spent thousands of pounds seeing neurologists privately. She had been ill for 12 years. In the end she couldn't walk or hardly talk. They kept telling her she had a mental health problem. Her husband left her because he believed the neurologists and couldn't understand why she couldn't pull herself together. She eventually saw a NHS neurologist. He took one look at her and immediately diagnosed Parkinson's Disease! It turned out one doctor had written 'depressed' on her notes. This coloured all of the other doctor's opinions. So going private is ok as long as you see the right one.

I'm not sure what to do next.

Best Wishes,

Paul

 

[BLPhill]

Paul318,

One thing I started doing differently after numerous dr visits, I brought several family members with me to dr visits. They explained the changes they had begun to see in me, only then did they begin to listen. (the DRS) I would certainly try this, it worked much better for me, as far as getting the drs to listen and take action.

Hang in there paul, it takes only 1 good dr and you will find him.

 

[amatopops]

stay positive, Paul

Paul

I'm new to the group and have PLS. My first neurologist didn't seem to have a clue, was cold and impersonal and gave me no hope. She eventually referred me to a neurosurgeon who did a cervical fusion that seemed to help a bit, but only for a short time. I'm now scheduled for a bachlofen pump in another month as my trial run of bachlofen direcly into the spine worked well, taking away the spasticity that I've lived with for 3 years. It seems to be the best way to go.

OK...I just wanted say HI to everyone and that I concur with Betty in that taking a friend, or family memer along to your appointments, someone who knows what is going on with you, is a good thing to do. It took me awhile, but I now take my wife to all appts and she's a list maker so we go in with lists and come out with lists.

Stay positive...as was said, you'll find the right doctor and hopefully things will get better for you. I'm pulling for you.

Joe

 

[BLPhill]

Joe,

Welcome to the forum.

 

[olly]

HI JOE. welcome to the forum.
sorry you have to be here but great that you found us.
despite the odd moan and venting we are a happy bunch.

paul.
i agree,i always have my mum or son with me at appointments.
they can speak up for you and remember things you have missed.
i got so upset reading about your ordeal today,i totally know how you feel.
i think you should take some time out but keep your gp upto date with whats going on.
is your gp understanding? they do know how specialists are sometimes.
eventually someone will get to the bottom of things.

i was told some years ago while going through the diagnosed procedure by a neuro rehab doc "does it matter about a diagnosed,its probably something we can not cure anyway"
YES IT DOES MATTER,its a name to the buggering hell you are going through.
if they were going through the same thing they would not even ask that question.

i am off to bed,i'm tired and ratty.
(((hugs)))paul and everyone