As Good As It Gets!!!

[Guest guest]

I had many bad experiences with doctors not treating me or willing to even make

any follow appointments.  I had come full circle with Physiatrists, OPT, PT,

Neurologists, Podiatrists, Orthotics, Pain Management, etc.  All kept passing me

along to others and as a last resort I took this groups advice and made an

appointment with the MDA. 

Today was seen by the MDA doctor accompanied by a physical therapist and

occupational therapist.  After 5 minutes he determined that I was not able to be

helped by them and I was " as good as it gets " .  I asked if there was something I

can do.  I am walking around with a straight cane which I think maybe the wrong

cane but no doctor including the MDA would prescribe me a cane or show me how to

use it correctly.

 

Basically I was told they were not going to help me even though I have an

advanced case of CMT and I am falling alot and in a lot of pain.  I am at a

loss, everyone is afraid of liability and treat me like a hot potato.  I am so

frustrated and give up all hope.  I am looking on going over seas where they

have better care for people like us. 

Because we are such a litigious country we are treated as liabilites.  I guess I

am just venting and sorry for seeming so negative.  I do thank everyone who had

offered support and given me suggestions.  Thanks

 

 

Andy

[Guest guest]

Andy,

If that's what the doctors say, then it looks like that's As Good As It Gets

with Doctors and its time to move on by yourself. I recommend to do lots and

lots of research. I haven't read all the issues you have with CMT, but the

archives have a lot of recommendations for whatever (pain or other) issue you

have. Do online research, read as much as you can and decide what is best for

you. Its called Mind Over Matter. Good Luck.

 

Debbie from MO

[Guest guest]

Andy,

That MDA clinic should be ashamed! And don't accept mediocracy.

If you are falling so much and in need of help, before you go out of the US, go

see Dr. Shy at Wayne State in Detroit. He is a CMT expert.

http://www.med.wayne.edu/Neurology/faculty_staff/shy.asp

Phone: (313) 577-1689

To make an appointment

http://www.med.wayne.edu/neurology/clin_programs/Labs/CMT/MakeAppointment.htm

He will help you and can evaluate your needs regarding the cane, shoes, leg

bracing, a scooter, or other. Also ask him about supplements, like Vitamin C,

Citicoline, Creatine, ALA, Co Enzyme CQ 10 and Whey protein.

Gretchen

[Guest guest]

Hi Andy,

 

I'm sorry that you didn't get what you needed from the MDA doctors.

 

Sometimes I think doctors dismiss us when they see there is no cure.  They look

at the big picture, realize there no cure, and send us away.  It's really up to

us as an individual to tell them specifically what we are looking for in the way

of assistance, so they know how to help us.

 

For example, when it comes to physical therapy, this is prescribed for a

specific need when there is a chance of improvement.  It's not used, in general,

for CMT, since exericise can't bring back atrophied CMT muscles.  However, if

you say, " I'd like to have a few visits with a therapist who can help me learn

how to safely stretch my achilles tendons, build up my core/thigh strength or

help with my balance issues " , then you are much more likely to get what you

need.

 

It may not seem fair, but you have to educate yourself on the things that may

help you and then very specifically request them from your doctors.

 

With pain management, it's the same thing.  If you say, " I went to pain

management and it didn't help " , then you aren't likely to get additional

assistance.  If you dismiss it, then they will dismiss it.  If, however, you

say, " I tried medications x,y & z and they didn't help, is there anything else

that you can do to help me with this pain that is keeping me awake at night " ,

then you are much more likely to get the help you need.  You can also ask about

specific medications that others have tried with success.

 

You have to be your own advocate.

 

It's also really helpful to have a primary care doctor who you can trust,

someone who cares about you.  A good primary doctor should take the time to show

you have to use your cane and/or order you a new one if you need it.  It doesn't

take a specialist for this.

 

If you decide to go overseas, please share with us what you learn when you get

back, ok?

 

I'm so sorry for your disappointment.  If there's something those of us on this

site can do to help you, please post.  I do wish you the best.

 

 

[Guest guest]

Andy:

Go to Colombia Presbyterian Hospital in NYC. It is the top hospital for

neurology in the North East. I never had any problems and I was diagnosed there

too. I did all my rehab in Helen Hospital. They are all very supportive

and helpful and definatly listen to you. I live in Connecticut now and the

doctors are very good too. I go to Bridgeport Hospital but all hospitals in the

Yale system are very good. Remember, do your research for the best doctors in

your area, you just can't go to any hospital. Look for those that specialize in

neurology.

Good luck...but I'll know you'll find the right doctor for you.

Marin

[Guest guest]

I want to thank everyone who responded to my post and those of you who offer

support.  I agree with what everyone has said.  We have to be our own advocates

and not expect a cure or a miracle treatment.  We have a very debilitating

disease with little available methods of treatment. 

I have never (until recently) let my disability make me I have overcome many

obstacles, I graduated college, have a good career which takes up most of my

time and a wonderful daughter who keeps me going.  I think we need to stay as

active as possible I truly believe it helps us mentally and phsyically.

I do have to learn how to ask for what I need and I will take everyone's advice

on how to talk to doctors so that they do not blow me off.  I just want to not

fall all the time and alleviate this pain that is all consuming at times. 

I am only 33 and feel like I am 90.  It has taken a toll on me and I feel

hopeless and helpless at times.  I am mostly worried for my

daughter who is only 9 and shows signs of the disease yet I have never had her

tested.  I am so afraid of ruining her spirits by having her live with a

diagnosis that can't just be turned off or fixed. 

I appreciate this group a lot.  I admit at times I am very critical and very

skepticle about holistic therapy and all the research but I believe this is a

disease that is multifacited and many people can do well with many different

things.  I am trying to be more positive and open minded.  If I go overseAs I

will keep everyone posted about how I made out. Thanks again for your support.

Andy

[Guest guest]

Andy,

The MDA clinic here in Indianapolis was great to me & my son. We made an

appointment on the same day, and they had 3 different Dr's. come in the room and

examined our feet, our walk, the strength in our hands,feet & legs, and went

over many different options they had for medications to help with pain.

They have an Orthotists on site, that came in our room about 10 minutes after

the Dr's. left and molded us both for AFOs. About a week later we went and

picked them up.

My son (who is much worse than I am), and had begun falling down an awful lot

was in heaven when he felt the difference the AFOS made.

He is so use to them now, he forgets he has them on. They told us to come back

as often as we needed for adjustments, if after a few days or a few months we

began to have sore spots, or any discomfort from the AFOs.

MDA of Indy paid for all of this, and actually made us feel like they cared how

progressive our CMT had become.

Not all MDA clinics are the same apparently.

Like Gretchen said...try another before you go out of the country.

 

Donna in Indy.

[Guest guest]

Andy....I have been going through the same thing ...for a long time.

The MDA is nearly 2 12-3 hrs from me and I don't drive! I don't know what to do

either! Would be nice to find a doc that gave a Rats A_____

Geri

[Guest guest]

Geri:

Do you have any family members that can help you or close friends?

Marin

[Guest guest]

Marin,

The ride is so far to the MAD...I don't like going in the winter...but my friend

will take me in the summer. Just so hard to get going when I have to be gone all

day! Wish I could find a good doc close but so far I haven't found one that care

to take the time understand me or CMT.

Geri

[Guest guest]

Unfortunately I have no family around me.  The only person in my family I am

close to is my sister in Florida who just recently diagnosed with CMT. I have a

few good friends that help me emotionally but I am not sure what else they could

or would do.

Andy

[Guest guest]

Andy:

I would call your local bureau of rehabiltation services. Someone can come to

your home as your case manager and work with you for the services you need.

There are many things they can assist you with. This is the time to use your

social services in your town or city. It would be helpful for them to know if

you have Medicaid or Medicare or social sercurity disability. They can help you

in attaining or referring those too.

Marin

[Guest guest]

,

Thank you for the information.  I still work full time and have had no period of

loss of work and only 33 so I do not think I would qualify for SSI/SSD, etc.  I

have great insurance since I work for the state and where I work is completely

ADA accessible.  Also since I have a college degree and had mostly office jobs

will work against me too, so I was told. 

Even if  did get it I would get more then half of what I make now and I barely

get by as it is.  Even though I have shared custody of my 9 year old daughter I

pay a lot of child support for her.  Also being single and having no family

around makes it even harder. 

I will try to call the local bureau of rehabilitation services to see if they

will take me.  Like I said so far no one is willing to take me on as a patient

so forgive me if I an skepticle.

Andy

[Guest guest]

Andy:

You have to be your own advocate. You do qualify for SSD benefits if you work

under a certain amount of time and how much income you make with the amount of

months you work. A case worker can tell you more about that. It's your choice

in the end. I use to be a case manager and a case manager's job is to find the

assistance you need, no matter what. Don't worry, you have a disability, you

are approved to have a case manager work for you.

How do you get to work?

[Guest guest]

,

Funny thing is I was a case manager almost 8 years and used to help get people

benefits too but that was 6 years ago and was in the mental health field

exclusively, since then I have been working in the court systems.  I work 50-60

hours week but salaried.  I make short of 6 figures but I pay out a lot for my

pension, my daughter, doctors, medicine, car payments (yes I drive), house

payments etc... I would qualify for SSD if I make that much and work that many

hours?  Also I have never not worked full time.  Also I doubt SSD would pay out

even half of what I get from my salary and I do not want to struggle making ends

meet.  I am very good at my job but am falling a lot and the CMT is now

effecting my hands. 

I agree we must be our own advocates and I have been up to this point so I would

like for a person to case manage my care so I am not being sent all over the

place where none interact with each other.  The case manager of the MDA seemed

very sweet but in the end I was seen 10 minutes and was told they could not help

me and no recommendations were made for any PT or other proactive approaches.  I

don't know why in NJ with all these so called great hospitals there is no doctor

willing to a least do more then evaluate and refer me out. 

Like I said earlier I can't even get a script for a cane or direction as to what

type of cane to use or even how to use the one I have.  It's very nice to talk

to you and I appreciate you taking the time to offer support and suggestions.

Andy