Re: coordinating our care

[Guest guest]

Hi Jackie,

Thanks much for the info.  Actually I saw 3 physiatrists last year (referred by

one of many neurologists) who as usual referred me out to PT and OPT, Pain Mgt,

etc.  The last OPT therapist said I really need someone to case manage me like

you said but of course he was not willing to help me.  I was told the only way I

would ever find a doctor who would prescribe or recommend canes and using them

properly is if I was hospitalized for an injury.  I thought they were crazy but

it was a consistent thing I heard from several others so I pretty much gave up

on that. 

I come to the conclusion that as of now I need to hear what all these doctors

are saying and just hold on to what little help I was able to get.  Hanger was

the only place who was willing to see me more then once and for that alone I was

very happy even if in the end he could not do anything.  I am very happy with

the braces he got for me and the shoes he modified for me as well.  I wish I

could do something to at least keep my body strong and do something for the pain

besides just narcotics.  I am looking into going oversees next year where

treatments are much better then what they are willing to offer here.  They

actually are not worried about liabilities or getting paid through insurance. 

I am so afraid of getting my daughter tested for CMT even though I highly

suspect she has it.  I would hate for her to have to go through all I did.  She

is turning 9 and happy being a kid, the last thing she needs is to be treated

like a thing.  Eventually I may have to so she doesn't get called lazy for not

doing well in gym and fail.

Andy

[Guest guest]

Andy,

Where do you live? The function of physiatrists is to help people witih rehab

and motbility. Yes, they will refer you to PT's and OT's, but they should be

willing to see you to follow up on your progress, or lack thereof. Try to find

one who is affiliated with PT clinic.

Penny

[Guest guest]

Andy,

 

Did you get my private email a few weeks ago with the doctor recommendation?

 

If she wasn't a good choice for you, I'd be happy to find you someone else. 

Just let me know the individual specifics of what you are looking for

(male/female, etc), as well as the insurance network you need to use,

i.e.  BCBSNJ PPO.

 

If the MDA doctor told you that you are the worst they've ever seen, that is an

indication that he really doesn't have a lot of experience with the disease.  I

personally have not had great success with the MDA doctors in my area either. 

They didn't know much about CMT as evidenced by the fact that they told me that

CMT can't cause pain.  That's how much they knew, which is why I continue to

encourage you to see someone in private care.  IMHO a doctor does not need to be

a so-called CMT specialist in order to be a good doctor.  All we need is a

neurologist who cares.

 

A caring neurologist will take you on as a patient, give you prescriptions for

medical devices as needed, fill out forms, write letters to the insurance

company, etc.  I also think a good primary care doctor can help a lot as

well.  You need both on your team, along with your pain mngt guy and your AFO

specialist.

 

Andy, what is it really that you seek?  If your goal is to 'get stronger' and

find pain relief from something other than narcotics, I think doctors may

continue to disappointed you, since there is no magic medical bullet yet.

 

This site, thanks to Gretchen, is 'cutting edge' when it comes to giving you all

the latest and greatest information and while there's lots of progress being

made, there's no medical solution yet.  Your best bet may be looking through

Gretchen's Archives here for all of the ideas that she and others have shared in

the past for ways to make improvement on your own.

 

For example, you could probably search " Gretchen " and " beach " and come up with a

long list of emails where she has shared her history.  Find one of those emails

and you'll likely find other suggestions from Gretchen and others, including

ideas for improving balance.  You can also find suggestions for how to use your

cane.  If you don't find what you're looking for, you can post a new question or

challenge to the group and I'm sure you'll get lots of ideas.

 

As for me, I did the physical therapy thing several times with very little

benefit.  In total, it was probably about 3 years of physical therapy that I

suffered through in my 20's and 30's.  I learned good suggestions for movement

to avoid injury, but I did not get any stronger.  I also paid good money to work

out with a personal trainer for many years in my 30's and 40's and the changes

were minimal.  I finally had to stop three years ago because I had grown so weak

that I was getting injured every visit.

 

I also tried aqua aerobics when in my late 20's and couldn't do it, because I

didn't have the strength in my legs to move myself around on the bottom of the

pool.  It killed my joints. (Now they have the Aqua Jogger belt, which is much

better.)  Anyway, when taking those classes, I learned about a linedancing class

and tried that.  Finally, I had found something I loved!  I got into dancing

classes several times a week for about 9 years, even doing substitute teaching

for awhile.  Unfortunately, I wore my hip down to bone-on-bone with the dancing

and had to stop after my hip replacement 8 years ago, but of all activities I

ever tried, that one helped me the most because I loved it.  I didn't care that

things hurt when I did it.  The love of the activity motivated me to move.  The

emotional aspect of the dancing had tremendous value, I didn't feel the pain as

much, and my legs/hips/feet DID get stronger.

 

If you listen to comments from others, I think you will find a common theme. 

Whether it's walking on the beach, yoga, walking 5ks, bike-riding, dancing,

etc...the activities that fill up the soul as well as move the body are those

that tend to provide the greatest benefit.

 

So find something you love to do and get those endorphins flowing!  

 

[Guest guest]

Andy,

Once I became an adult, I realized coordinating my care was up to ME.

Being of the generation that grew up with " Question Authority " I have

always been assertive (and perhaps agressive) with docs, ask questions,

more questions, ask the PTs questions, sometimes say " No " to suggested

medications, tests, etc. Doctors are not the 'gods' the generation

before me thought they were.

With CMT, you MUST be your own advocate and stand up for yourself at

every turn. How shall I put this delicately - use the 2 you have. Be

assertive, and do not stop.

I understand your concern about your daughter, however, I will tell you

that early intervention in CMT can make all the difference for a child.

As for the recommended doctors you have seen that wouldn't help you,

have you considerd passing this on to the organization that recommended

them?

Andy, I realize you have been through alot. We ALL have. You are young

and have a wonderful long life ahead of you. You already know there is

no means of arresting CMT - yet. However, in the next 3 to 5 years we

are going to see some major breakthroughs.

In the meantime, I hope you realize that there isn't a doctor on this

planet that can tell you anymore about CMT than we already know. Going

out of the Country is your choice, but keep your expectations low.

There is much research ongoing in the EU, but it's just that, research.

That takes time.

Coordinating your care should be a #1 priority in your life. This is

where you must pay attention, ask questions, don't let professionals

intimidate you, and keep going until you find a doctor you like whether

a GP, Internist, Ortho, Neuro, etc. Then work with that doctor to

manage your symptoms in a way that will give you the quality of life

you deserve. Ask that doctor for a referral to 'the BEST' PT or OT or

for whatever you need (cane, scooter, etc)

If you seriously want to speak with a " CMT doctor " , travel to Detroit

and see Dr. Shy. You might also want to get a copy of the DVD from the

West Coast CMT Conference, as there was important information presented.

Those of us with CMT travel a very unique journey, balancing the

uncertainty of a disease that is still in a 'discovery phase'. Take

excellent care of yourself on all levels, physical, emotional,

psychological and spiritual.

Gretchen

P.S. Good Advice from too!

[Guest guest]

,

Thank you much for your reply and willing to give contacts you feel may work for

me.  You are asking me a very important question, what is it I am hoping to

gain.  To answer that I have to go back about 15 years ago when my grandmother

invested a lot of time and money on me to get the best doctors there

were.  Before then I was nothing more then a guinea pig for medical students. 

I ended up seeing the so called #2 best neurologist who wrote a whole book on

CMT.  I remember waiting almost 2 years to get an appointment to see him.  Also

my grandmother had to pay out of pocket.  The doctor saw me no more the 5

minutes looked at me and said " you have CMT " after telling him I already knew

this he asked me what I was looking to accomplish for being there, I felt like

he thought I was wasting his valuable time

My answer was simple I wanted too improve the quality of my life or at least do

what I can to prolong the disease.  He quickly

interupted me with a sarcastic tone and said " you have CMT there isn't really

anything you are going to find that will help you " .

He told me too be more realistic in my expectations and said I would be in a

wheelchair by 30.  My grandmother hit him with a lot of questions such as PT,

Surgery, etc.  He pretty much told me since I was so young surgery would make me

much worse in the long run and he was very much against surgery for CMT

patients. 

PT he said would make the disease much worse quicker.  

After that experience it was not till about 15 years later (last year) until I

decided I needed to put myself out there again thinking there were more advances

in the treatment of the disease.  I was very dissapointed in what I found and I

saw doctor/specialist after doctor/specialist until I exhausted my resources.  

I did get your private email and have it written down but too be honest people

have been very nice to me and gave me doctors who they loved and my experience

with them was very different then theirs.  I guess I just want to know how other

people were able to make progress or have an active plan moving forward.

I am realistic in the fact I will always have some pain and the fact I will

never be running around or be mobile for a lot longer.  I have a 9 year old

daughter who I suspect also has CMT and I am very scared for her and how I will

care for her as well as myself. 

From what I read I would not qualify for SSDI/SSI and I am not sure how much

longer I can work.  Also I have no family that can take me in or help.  I have a

few good friends but I can't burden them by having them care for me, they have

families of their own.

I am very thankful for this group and I think I ask so many questions because it

seems hearing other's success or in my case lack their of will hopefully point

me in a direction.  The problem is everyone is different and what works for one

doesn't work for another.

I am happy I have orthotics that seems to give me a little more support and a

primary doctor who has been nice and tried several medications to help with the

pain and lastly aquatic therapy I like and not so sure its going to improve the

CMT but it does relax me some especially after a long day at work.  I am trying

not to be the complainer and the downer of this group I really just want to be

able to live the best I can and provide for my daughter.  Thanks again for

everything I really do appreciate your willingness to help. 

Andy

[Guest guest]

Gretchen,

Thanks much for everything you said and I agree it comes down to the person who

knows me best and that is ME.  Actually the Herdirary Neuropathy Foundation

wrote an article about me from what they read from my posts here:

As Good as it Gets? A Young Man's Struggle to Find Compassionate Treatment in

the Face of Severe CMT

I actually spoke about specific places that I had bad experiences with such as

UMDJ, Kessler Rehab, Pennsylvania University Hospital, JFK Rehabilitation

hospital, MDA, etc.  But I regret that being posted because they are the very

same places people highly recommend as well as the CMTA.  Someone told me

recently to NOT see a specialist in CMT because they may already have

preconcieved doubts about any real treatment and interested more in the study of

the disease. 

It would be interesting to see a doctor without much medical history so they

will actually spend a little more time looking at me and not refer to what they

read in books or in research.  What if some of my pain and problems are not just

CMT? What if their are certain things that can be helped outside the CMT

disease?  I have not been given that option.

I mentioned going over seas for that very reason seeing a doctor that will try

experimental things no matter what the risks are, here

in the US if their was 20% chance of serious risks they pull them off the

shelves yet what about the 80% who do well? 

I would love to come on here and say this is what worked for me and be able to

be a positive contributer to this group.  I can say 2 positive things, one is

Kessler has been great with me for AFOs and thinking out of the box and aquatic

therapy has been great for me in dealing with pain.  That is what I should focus

on.

One thing I can say with confidence is I am a fighter have been my whole life

struggling to live with this disease.  I did not have a close family who

supported me so I had to learn life by living it.   I was able to go to college,

have a good job (working since I was 12) and having to work 3 times harder then

most because of the limitations of the disease.

I owe some of this to my stubborness and my pride.  I am also a very loving

father and my daughter is definately cared for and that is what my focus is.  I

wouldn't change any thing in my life because of what it landed me my daughter. 

Gretchen, I think you are an amazing person and you have such a deep passion to

reaching out to others like us.  Even though at times I may have disagreed with

a few things you certainly are the guru of up to date knowledge and I had to

learn how to take the time and actually listen to what was being said.

I am also trying to set up a support group for people who suffer from this

disease.  I have worked in mental health almost 9 years before changing careers

and feel I would be great at helping people as well as myself.

Andy

[Guest guest]

Andy,

The " what ifs " will drive you crazy and only create stress. Getting

these resolved will get you the answers. Morbidly reflecting on

health issues and not taking action got me nowhere. I always get a

physical " what if " checked out. You DO have the option of

getting 'what ifs' resolved. As for 'the committee in my head' I practice

meditation and journaling to keep thoughts and actions in a positive frame.

I too was told I'd be in a wheelchair by 30. 25 years later I'm not

there at all. But that was a wake-up call.

A 12 step program for another disease I have has helped me immensely

with CMT in regards to acceptance, attitude, and having the courage

to change what I can. Regular exercise, whether on land or in water

has helped me immensely. Keeping my weight low by eating less,

better, organic, and fresh has helped. Taking Vitamin E daily has

helped. Drinking Fijiwater (loaded with Silica) has helped.

Are you really willing to try overseas medical tourism and taking the

chance that an 'experimental therapy' may cause horrible infection or

even death?

I can't remember what type of CMT you have, if it is 1A, you can

still enroll in the Vitamin C trials, which may be a good move for

you.

It is good news that Kessler has helped with your AFOs and you're in

aquatic therapy. Also good news that you want to start a support

group.

You may want to look into some of the supplements others take that

helps them, like CoQ10, Citicoline, Curcumin, and more. A list is in

our Files.

When I was your age I too had to work 3X harder, or so I thought.

Instead, upon introspection, I had to admit that was BS for me, I was

working 3X harder to PROVE I was 'as good as'. When I recognized that

was BS, I learned to work 'smarter', not harder. That made whopping positive

changes in my life!

I have never believed I 'suffer' from CMT. Sure, there have been many

difficulties, but I turned them into 'challenges' and worked them out.

I believe in 'living forward' with each new day.

I'm not a guru (but thanks for the compliment) I am just a person who

has lived with a CMT diagnosis for 46 years, and have only studied

the disease seriously for the last 12.

Gretchen

[Guest guest]

Gretchen,

I actually do have CMT1A but it was a hard diagnosis.  When the blood tests

first came out UMDNJ pressured me to pay the costs to get the blood test and

after paying close to $850 I called for my results only to find out they were

not obligated to give me the results and it was used for research on the link of

CMT and Diabetes.  I was furious but decided to get re-tested and it was

confirmed as CMT1A.

I was very interested in the Vitamin C study and was emailing the study in New

York I believe but for some reason she never got back to me even after a few

attempts to follow up.  I would try most anything the pain is just unbearable at

times and I have a desire to do what it takes to get there.  It's trial and

error and so far no luck but like you said we are a few years away from some

medical advances to help us.  Do you know of any other Vitamin C studys closer

to my area?

Thanks

Andy  

[Guest guest]

Andy:

Pain can come from exercising your muscles too hard. Even walking for long

periods of time can make you have pain too. I have learned to curve my pain by

just using a motor chair at work and using my crutches at home. I also lesson

the intensity of my workouts.

Marin

[Guest guest]

Andy,

In your post you mention about going to a doctor to find out if maybe some of

your symptoms were caused from other things.... A few funny stories come to

mind...

 

1.  My bad symptoms of CMt first appeared in 1997 when I had taken Deproprovia

for female problems.  After 3 days of taking it I could not get out of bed and

walk.  For the year before that my female problems and feet hurting were both

getting worst  Later that next year I had a hysterectomy and during a visit to

UTSW my neurologist Dr Wolfe said " did you really think your pain and problems

would go away with your hysterectomy? " and I promptly answered yes I was sure

hoping so.... they seemed to come together why couldn't they go away together? "  

2.  I had my 2nd child in 1993 and could not lose the baby weight.  I started

running 3-4 miles 3-4 times a week in 1995.  After my feet hurt me so bad, the

pain in my side, plantar fasciitis etc I slowly stopped running.  I never

thought the running was connected to my increasing pain.

3.  Lastly from 1997 thru 2003 I took Ultram up to 4 per day (at my peak) (no I

never was hooked or had any of the side effects people have cautioned) but none

the less my pain was my major symptom.  I got divorced in the end of 2002- I

often made excuses of why I stayed in my unhealthy marriage and if you ever

tried to link my pain to stress I would have convinced you otherwise.  I have

taken no more than a dozen Ultram or any strong pain reliever since 2003. 

I consider myself med free and yes it all started with my divorce!!

Now when I begin to get stressed and the pins and needles start... I call that

my " CMT speed bumps of life "  

So long story to stay - solve all those others things that are wrong and you may

just feel better.... No your CMT won't go away but you would be surprised how

dealing with just a few problems of CMT can be a whole lot easier than a dozen

over lapping issues.

 

Kim

[Guest guest]

Godmorning Andy.

It is morning here in Denmark. It seemes you finally have met some true

ressources and very helpfull people here in this place. At last!! It´s pityfull

to hear about the unsensitive and unengaged meetings you seemed to have had with

quite a few doctors. Here you have both the kindness, understanding and a huge

experience as your asset.

THAT is truly something to celebrate!  I wish you all the best.

much love,

Anne

[Guest guest]

Hello Anne from Denmark,

I agree the information found here is much better then looking at a book or

medical terminology or research.  There is a human side to us and we can not

lose site of that.  We are more then just a disease and we all have overcome

obstacles in one way or another throughout our lives.

Andy

[Guest guest]

Kim,

I used to take the max dose of Ultracet 2 pills 4 times a day and I definately

felt it when I missed a dose.  I am now on Ultram ER one pull a day and I love

it.  It doesn't take all the pain away but certainly helps manage it some.  I

have heard people have been addicted to ltracet which is surprising for me since

it is not a major narcotic and I think anyone with an addicted personality could

be addicted to anything even Tylenol.

Your stories are very interesting, I realize emotional aspects to the

progression of the disease.  I was diagnosed at the age of 5 so I have always

been affected by CMT.  The last 5 years have been much worse but looking at my

life surely adds to it.  I was divorced about 5 years ago and my ex wife left me

because she was embarrased being with someone who was disabled and thought I was

completely faking it. 

She cheated and left state with her new boyfriend and my daughter.  I had been

horrified and filed kidnapping charges and emergent custody.  Many have spoken

about a higher power along with the 12 step program.  My daughter has been my

higher power and my motivation to keep on living.  She is really the only family

connection I have and I would not change a thing in my life cause every action

and heartache lead me to my daughter.

I definately understand the CMT bumps in life but they are just that bumps we

can sometimes go around them, if we are very strong willed go over them or like

many stay put and decide to never go forward and tackle them.  I have done all

3.

Andy

[Guest guest]

,

I agree there is a fine balance of exercise our body needs to keep moving and

stay active and those which are too much and make it worse.  I am very stubborn

and have way too much pride so I admit I push myself very hard every day but at

the same time I avoid a lot of situations that will have me stand out rather

then just get over it and buy a motorized chair.  I have learned to finally use

a cane which is a big step for me and I even embraced it by collecting antique

canes, people do treat you differently but people who know me handle it well and

actually like some of the canes I use.

Andy

[Guest guest]

Gretchen,

I think you have certainly reflected on life and your place in it and that's

great!  I could learn a lot from your outlook and experience.  I was a therapist

for 9 years and I was great at my job I also ran a lot of 12 step programs,

encouraged counseling, journal writing and relaxation/meditation training. 

Unfortunaltely when it came to self help I was never able to apply those things

to myself.  I am not sure why exactly maybe it's my own mind telling myself I

know all of that been there done that.  My mind at times is overly skepticle and

overly logical and I wish I was able to practice what I preach.

To clarify Kessler was absolutely no help to me and the only reason I went to

Hanger was I didn't know where else to go that I haven't gone already.  Kessler

was the one who said they don't even know how to put CMT in to their billing and

told me the only way a PT or OPT would work with me is if I was in a bad

accident and hospitalized.

The OPT there was the one who said I needed someone to manage my care he clearly

saw the problem I had yet he could not tell me who and he certainly was not

willing to take that on.

Today I was in the ER cause I fell very hard the other day and I could barely

walk so I thought I might have broken my foot.  They gave me an Xray and saw

some atrophy and when I was unable to move my toes she asked what was wrong with

me.  I told her about the CMT and within 5 minutes I was released.  My care plan

was to follow up with my regular CMT specialist which of course I do not have so

I decided to try to find an orthopedic surgeon who I haven't seen yet and

willing to give it one more shot to see if I can get more then an inital

evaluation.

I have given your question a lot of thought about taking risks over seas and I

honostly would take a strong risk at worse injury if I knew of at least one

person with CMT who was helped.  I guess that's where I am at now because of the

lack of resources I have here.  I may of course change my mind and realize I

have too much too risk since my daughter needs her father.  If I didn't have her

I would not think twice about it I would try anything.

Guru or not I appreciate your information and well read research on the

disease.  Surely many of us benefit from the information you share including

myself.  I would have never heard of Hanger orthotics if it wasn't for this

forum.

Andy