Re: Need Help with Neurologist

[Guest guest]

Go to  the www.mda.org web site, and go to  Find Your Local Office.

My husband goes to a neurologist through the mda.

From: Matt <tbobematt@...>

Subject: Need Help with Neurologist

Date: Saturday, April 10, 2010, 7:36 PM

 

Hey all, I'm in need of some advice!

I'm trying to find a neurologist that will help me treat my CMT symptoms and

what not. I have seen an associate of Dr. Shy's twice before and he was not

interested in helping me at all! My primary care doctor kinda poo pooed the idea

of me having CMT before I got an official diagnosis so I really don't want to go

back to him for help.

So my question is how do you go about finding a good neurologist that is

knowledgeable of CMT? I'm sick and tired of constantly being in pain all over

and sick of being pooh poohed by doctors! I've been to soooo many doctors over

the past 3 years and none of them have been really helpful! Is it appropriate to

have a neurologist be my primary doctor? and when I do go see one, how should I

present my problems? I have so many issues, from my head to my toes, that I

often forget to include some stuff. Any advise or words of wisdom would be

greatly appreciated!

Matt

[Guest guest]

Hello Matt

If you've already seen Dr. Shy, all you need to do is ask him for direction as

regards his suggestions for a PCP or other doctors. You've got the answer right

there waiting for you.

Mark

>

> Hey all, I'm in need of some advice!

>

> I'm trying to find a neurologist that will help me treat my CMT symptoms and

what not. I have seen an associate of Dr. Shy's twice before and he was not

interested in helping me at all! My primary care doctor kinda poo pooed the

idea of me having CMT before I got an official diagnosis so I really don't want

to go back to him for help.

>

> So my question is how do you go about finding a good neurologist that is

knowledgeable of CMT? I'm sick and tired of constantly being in pain all over

and sick of being pooh poohed by doctors! I've been to soooo many doctors over

the past 3 years and none of them have been really helpful! Is it appropriate to

have a neurologist be my primary doctor? and when I do go see one, how should I

present my problems? I have so many issues, from my head to my toes, that I

often forget to include some stuff. Any advise or words of wisdom would be

greatly appreciated!

>

> Matt

>

[Guest guest]

Where are you located?

defman

From: Matt <tbobematt@...>

Subject: Need Help with Neurologist

Date: Saturday, April 10, 2010, 4:36 PM

 

Hey all, I'm in need of some advice!

I'm trying to find a neurologist that will help me treat my CMT symptoms and

what not. I have seen an associate of Dr. Shy's twice before and he was not

interested in helping me at all! My primary care doctor kinda poo pooed the idea

of me having CMT before I got an official diagnosis so I really don't want to go

back to him for help.

So my question is how do you go about finding a good neurologist that is

knowledgeable of CMT? I'm sick and tired of constantly being in pain all over

and sick of being pooh poohed by doctors! I've been to soooo many doctors over

the past 3 years and none of them have been really helpful! Is it appropriate to

have a neurologist be my primary doctor? and when I do go see one, how should I

present my problems? I have so many issues, from my head to my toes, that I

often forget to include some stuff. Any advise or words of wisdom would be

greatly appreciated!

Matt

[Guest guest]

Neurologists are wonderful for a diagnosis after that I don't see the point

in going to one.

In a message dated 4/10/2010 5:04:06 P.M. Pacific Daylight Time,

tbobematt@... writes:

Hey all, I'm in need of some advice!

I'm trying to find a neurologist that will help me treat my CMT symptoms

and what not. I have seen an associate of Dr. Shy's twice before and he was

not interested in helping me at all! My primary care doctor kinda poo pooed

the idea of me having CMT before I got an official diagnosis so I really

don't want to go back to him for help.

So my question is how do you go about finding a good neurologist that is

knowledgeable of CMT? I'm sick and tired of constantly being in pain all

over and sick of being pooh poohed by doctors! I've been to soooo many doctors

over the past 3 years and none of them have been really helpful! Is it

appropriate to have a neurologist be my primary doctor? and when I do go see

one, how should I present my problems? I have so many issues, from my head

to my toes, that I often forget to include some stuff. Any advise or words

of wisdom would be greatly appreciated!

Matt

[Guest guest]

Hello Matt,

This has been my experience as well. I also thought it peculiar at the

time but now think that the neurologist is a discoverer and not a curer

of neural disease. It is the venue of physiatrists, physical therapists,

nutrionists, endocrinologists, etc. to alleviate the effects of a

neuropathy. That leaves a small area of avoidance of a neural disease as

an avenue of " cure " . Some diseases like cancer and infections are curable

by direct effect or even allergies by interdiction, but I see no way of

regenerating or replacing neural networks on the horizon as a body wide

curative procedure.

So, we indeed have to learn to live with it even if we must search for a

doctor interested in getting the best out of our life as it is dealt to

us.

Sorry about that, but it is my belief.

EdM from NH

____________________________________________________________

[Guest guest]

Hi Matt,

 

I think it's interesting that you say you have problems from head to toe. 

That's how I feel too and as a result, I started making a list of all of my

problems, literally starting with my head and working my way down to my

toes...to make sure I didn't leave anything out. 

 

I update this " symptom list " every time I go to the doctor and present it to

him/her at the beginning of each appointment.  It helps me not to forgot

things.  It also really helps the doctor.  Along with this symptoms list, I

also include a list of my current meds (prescription and OTC), and a  " request

list " .

 

The request list is probably the most important, because it tells the doctors

right up front what my expectations are for each visit.  The

doctors appreciate it and I notice they will usually check out the request list

first, before they even get started with the conversation or exam.

 

As for whether a neurologist can act as your primary care doctor, that's

probably up to the doctor.  In my experience, most don't like to do that

because they don't usually deal with the more routine/primary issues.  Their

treatment is typically limited to their specialty.  There may be some docs out

there who will act as a PCP for a CMT patient, but most don't.

 

I've also found that many neurologists don't like to treat severe pain

issues.  They will give basic meds, like Neurontin or Lyrica, but not opiods

meds.  If your pain is uncontrolled with the treatment you've been getting, I

would recommend a pain management specialist.  Their job is to listen to your

symptoms of pain and figure out a way to solve it.

 

  

From: Matt <tbobematt@...>

Subject: Need Help with Neurologist

Date: Saturday, April 10, 2010, 4:36 PM

 

Hey all, I'm in need of some advice!

I'm trying to find a neurologist that will help me treat my CMT symptoms and

what not. I have seen an associate of Dr. Shy's twice before and he was not

interested in helping me at all! My primary care doctor kinda poo pooed the idea

of me having CMT before I got an official diagnosis so I really don't want to go

back to him for help.

So my question is how do you go about finding a good neurologist that is

knowledgeable of CMT? I'm sick and tired of constantly being in pain all over

and sick of being pooh poohed by doctors! I've been to soooo many doctors over

the past 3 years and none of them have been really helpful! Is it appropriate to

have a neurologist be my primary doctor? and when I do go see one, how should I

present my problems? I have so many issues, from my head to my toes, that I

often forget to include some stuff. Any advise or words of wisdom would be

greatly appreciated!

Matt

[Guest guest]

Matt,

There are now about 8 CMT Centers of Excellance throughout the USA, all with

neurologists who know about CMT. ('s Hopkins CMT Clinic, Wayne State, U of

Rochester Medical Center, U of Penn, Children's Hospital of Philadelphia at U

Penn, Childrens' Medical Center Dallas, and U of Washington Seattle)These

neurologist are highly skilled, and the centers are promising.

However, a neurologist would not be the best for routine primary care, such as a

yearly physical in general, heart, lungs, prostate for men, possible colds/sore

throat, flu, EKG, cholesterol check/routine blood work, etc. Your PC Doctor of

course won't know CMT, but that is irevelant for general care. You can take CMT

info to him/her (including the latest newsletters, brochures (even a new one in

Spanish) for education.

Make sure the PC Doctor checks over the CMT Medication Alert List - and make

sure you know about it too. Your PC doc needs to be aware of this, and any other

substances you should not take - like medications you have a history of

allergies with, statins, etc.

For each new Doctor I see, I give them a 1 page " Medical Brief " on all my

medical history - as far back as the 1960s. (Yes, there's alot and it includes

CMT) but the last Neurologist and Internist I saw commented " I've never seen

anything like this before, and this is really helpful " . (I can send you an

outline for writing your own Medical Brief) I update it about twice a year -

around the time we change clocks, lol, just so I remember to do it!Docs here

keep electronic records, so all they had to do was scan in the info. That way

they have my history and cuts down on my time and theirs.

Ask your friends who there PC Doc/Internist is. Or ask the Neurologist you like

so much for a recommendation. I found my current neurologist by asking my

trusted Orthopedist.

As for seeing a Neurologist again, like , I feel what's the point, unless

you have problems with a new symptom (like say uncontrolled tremors, or severe

muscle cramps that you've not had before, or are on a medication for CMT related

issues that needs to be checked)

Gretchen

[Guest guest]

Matt, so much good advice here already, so the best I can do is " second " a lot

of it. MOST Neurolgists are only good for the initial diagnosis. Most have too

generalist knowledge for real follow up and treatment. They treat your neuropic

pains and things like that, and keep tabs on progression, but for daily living

you need a different specialist and a more comprehensive approach. The

physiatrist is a good start, and from there YOU are your best advocate and judge

on what you need. Dr Shy is by far one of the exceptions and provides a

comprehensive approach through multiple disciplines at his clinic. We have made

a trip to the Wayne State Clinic an annual event to keep us on track to manage

this for my son and I locally. We have found orthotists and other specialists

locally to work with on our own navigation, but it all starts with our annual

visit to Dr. Shy. If you are unsure about going, it is only Detroit! It is not a

foreign country. We live in NJ and still go out there. There are other CMT

Centers of Excellence also, so maybe one is closer. Philadelphia, Baltimore,

Seattle, Dallas, and Rochester, NY are the current locations.

Mark W.

>

> Hey all, I'm in need of some advice!

>

> I'm trying to find a neurologist that will help me treat my CMT symptoms and

what not. I have seen an associate of Dr. Shy's twice before and he was not

interested in helping me at all! My primary care doctor kinda poo pooed the

idea of me having CMT before I got an official diagnosis so I really don't want

to go back to him for help.

>

> So my question is how do you go about finding a good neurologist that is

knowledgeable of CMT? I'm sick and tired of constantly being in pain all over

and sick of being pooh poohed by doctors! I've been to soooo many doctors over

the past 3 years and none of them have been really helpful! Is it appropriate to

have a neurologist be my primary doctor? and when I do go see one, how should I

present my problems? I have so many issues, from my head to my toes, that I

often forget to include some stuff. Any advise or words of wisdom would be

greatly appreciated!

>

> Matt

>

[Guest guest]

Gretchen,

I would love to have an outline of your medical brief. This is an excellent

idea. I am getting ready to go see a new neurologist in a few weeks and this

would be very helpful.

My PC is sending me to an new neurologist because there are symptoms that i have

been suffering with that could indicate something more going on than my HNPP. He

told me that there are things that are indicating a central nervous problem. I

already knew that there were things going on with me that didn't necesarly fit

into the 'box' of HNPP, although this disorder a lot of the times doesnt have a

box and my PC is aware of that.

He is an excellent PC and am very blessed to have him almost litterally in my

back yard in my very small town!

I have been genetically diagnosised, so we aren't looking for a misdiagnosis,

but the possibility of something more going on. He sent me for xrays of my

chest, ribs, cervical spine, and thoracic spine. He sent me straight to do that

because it was very evident that I was in pain in my upper back/upper trunk

region. I already suspect that I have scoliosis (this was recently seen on an

xray from a chiropractor, who by the way after seeing the xray wouldn't

manupliate me) So i believe that the 'official' xrays will confirm this.

I have many symptoms, some very odd and some not, and I want to be able to go to

the new neurologist with them 'in order'. Shoot, I want them in order for myself

also! I can definatly agree with my PC that my symptoms could indicate something

additional going on. I am really praying that this neurologist is a 'good' one.

I jsut want my ducks in a row as best as i can when i go in. So all of that to

say " Could I get the outline? " , LOL!

Bree-Anne

[Guest guest]

Hello everyone! That's excellent advice Me Too. I go to a MDA clinic and my

Doctor is very understanding and knowledgable about CMT. Also the MDA website

is a good source of info. on CMT.

[Guest guest]

Matt:

Here is some advice, strictly personal, and in no way do they represent the

views of , MDA, AAN, ANA, or any other alphabet circus.

Forget finding a neurologist. If you have been diagnosed as having CMT, a

neurologist's work is done. All you will be to a neurologist is semi-annual

contributor to making his nut.

What you need to do immediately is seek out a physiatrist/rehabilation physician

whose sole interest is improving your quality of life. Most physiatrists are

happy to see patients like us as we break up a day treating high-cervical

quadriplegics and multiple amputees. We are patients that, with the proper

therapists and a positive attitude, can achieve nearly normal lifestyles.

Find a doctor that cares about gait and falling and flexibility, instead of one

who offers the latest incarnation of gabapentin and the latest sophistry in

telling you, " You know very well that you have what you have. "

Regards.

--Larry

[Guest guest]

Matt,

Some docs don't find the need to help us unless there is a cure...It's called

" wasting their time! " I'm 68 and still looking for a doc that is

interested!........In me and my CMT.

Geri