lots of questions

[Guest guest]

The actual cat scan lasts about 20 minutes. It is very important that the baby be very still for the scan so he should be mildly sedated for the scan. Then they strap him onto a back board and do the scan. The baby is usually pretty groggy for a few hours afterwards. I always got the scan results in 2-3 days. After the scan, the neuro & the radiologist will analize them, confer and get back to you.

Good luck!

F.~~Buffalo, NYMama to:, Jordan (cranio,plagio & tort~Starband 10-24-03) & Click below to see our boys!http://www.babiesonline.com/babies/t/twinsjordanjohn

My 6 month old has torticollis and plagiocephaly and was fitted for a helmet yesterday. The pediatric neurologist wants to do a cat scan to make sure he does not have craniosyntosis. He doesn't think he does, but he wants to be 100% sure. I am a little nervous about this. I was wondering if anyone could answer a few of my questions. How long does the actual cat scan last? Do they give them something to make them still? Are they tied down? How quickly do you find out the results?

[Guest guest]

- Can't help you on the cat scan questions, didn't have one.

I did want to ask if you saw Bill Barringer for the casting yesterday and how did that go?

Let me know if you have any more questions.

Cory, mom to (6/5/03)

STARband 11/26/03, in OK

[Guest guest]

I actually decided to go with First Step Orthotics in Tulsa since it is so much closer to where I live. Casting went really well until we had to get the casting off of his head. It kind of got stuck so he had to peel part of it apart, but that is why they mark it. He turned bright red. Overall it was a success. I definitely would not want to go through that everyday. We also are going to a different pediatric neurologist in Tulsa. It makes life a lot easier and I have heard good things about both places.

Re: Lots of Questions

- Can't help you on the cat scan questions, didn't have one.

I did want to ask if you saw Bill Barringer for the casting yesterday and how did that go?

Let me know if you have any more questions.

Cory, mom to (6/5/03)

STARband 11/26/03, in OKFor more plagio info

[Guest guest]

Hi ,

I see your questions were already answered so I'll just welcome you

to the group. Please keep us posted.

> My 6 month old has torticollis and plagiocephaly and was fitted for

a helmet yesterday. The pediatric neurologist wants to do a cat scan

to make sure he does not have craniosyntosis. He doesn't think he

does, but he wants to be 100% sure. I am a little nervous about

this. I was wondering if anyone could answer a few of my questions.

How long does the actual cat scan last? Do they give them something

to make them still? Are they tied down? How quickly do you find out

the results?

>

> For anyone who is really struggling with exercises for torticollis

(as long as the baby weighs less than 33 lbs), I have found that the

best way for us is to put him in the Baby Bjorn looking outward and

walk around while doing the stretches. Sometimes my back and

shoulders hurt from it, but I think it is worth it. He hardly ever

cries that way. I know each baby is different. Good Luck!

>

>

[Guest guest]

Hello ! I can't help you out with the cat scan, since our ped

didn't feel the need for one, but i wanted to say thanks for the tip

about tort stretches! my 6 month old daughter hates her stretches

and really fights them, so we'll definitely give this a try!!

I'm sure you'll get advice about the scan... lots of parents have

gone through it!

& Abigail (StarBanded 2/10 - 3/8, 2nd band pending, & tort)

> My 6 month old has torticollis and plagiocephaly and was fitted

for a helmet yesterday. The pediatric neurologist wants to do a cat

scan to make sure he does not have craniosyntosis. He doesn't think

he does, but he wants to be 100% sure. I am a little nervous about

this. I was wondering if anyone could answer a few of my

questions. How long does the actual cat scan last? Do they give

them something to make them still? Are they tied down? How quickly

do you find out the results?

>

> For anyone who is really struggling with exercises for torticollis

(as long as the baby weighs less than 33 lbs), I have found that the

best way for us is to put him in the Baby Bjorn looking outward and

walk around while doing the stretches. Sometimes my back and

shoulders hurt from it, but I think it is worth it. He hardly ever

cries that way. I know each baby is different. Good Luck!

>

>

[Guest guest]

Hey everyone,

I was diagnosed with CMT 2 years ago by my neuro. The nerve

conduction study was very obvious. I got a 2nd confirmation (CMT)

from a Vanderbilt neuro. No neuro has done a nerve biopsy or told me

anything to do that would be preventive or prolonging.

My neuro closed my chart and told me he wished he could do something

for me, but he knows there is nothing he can do. My wife asked the

neuro about starting physical therapy as a preventive measure. He

said no. I still continue to lift weights and ride a stationary

bicycle for cardio. I have always worked out on a regular basis.

I have not experienced any weakening in my legs or feet yet. I do

not have any foot, ankles, or toe problems as of yet, only that they

are extremely cold and numb. My lower back started hurting badly

back in August. I am on Tramadol, at least 1-2 doses a day for that

pain.

Gretchen suggested I have a MRI on my back. It may be something else

causing the pain. I hope to hear back from the scheduler today.

I have lost my knee reflexes when they are popped with the rubber

hammer. My right arm has been aching,tingling,and itching. Also, it

is numb on and off for the last couple of weeks. I have been very

fatigued at the end of the day. I am a elementary school teacher and

stand most of the day. I feel like my CMT symptoms are coming on

faster now.

I experience electrical-shock like pains that travel down my back,

probably once a week.

I did start Vit C 2 weeks ago. Yesterday, I felt very good, had

great energy all day, and went to work out last night. Neither my

back, nor arm hurt all day! Maybe the Vit C is working? I'm taking

9,000 mg throughout the day. I'm 6'1 and weigh 215 lbs. I seem to

be tolerating 9,000 mg -no side effects yet.

Here are my questions for you others with CMT:

1. Do I need a nerve biopsy?

2. Do I need to know what type of CMT I have. I am almost 40. My

neuro thinks I have CMT1A.

3. I have 2 children, son (age 9)and a daughter(age 6). Do I need to

have them tested? My son walks on the balls of his feet most of the

time. We've always thought it was a habit. Now we're concerned. He

does not complain about his feet or legs.

4. Should I start doing yoga?

5. Should I bother seeking out another neuro, who specializes in CMT?

How can a CMT " specialist " help me. What can he/she offer to me that

my local neuro hasn't?

6. Has anyone heard of Dr. Greg (University of Washington in

Seattle), or Dr. England (New Orleans)? Both are neuros who are

very familiar with CMT. Dr. says he will be happy to see me

if I can get out there. He also recommended Dr. England. My wife

found out about them(not from the list) and wants to take me to

one of them. Is this a waste of time and money?

7. Will the dr.s at the California conference be CMT specialists,

and would one of them be good to see?

8. Given my current symptoms, is there anyway to predict what, or

when the next physical weakness will occur? I know CMT effects

everyone in a different way.

9. I have Blue Cross/Blue Shield through the school system. Will

they cover the cost of the CMT blood test? My wifw called them

yesterday and they need a code number for the test. What has been

everyone's experience with coverage?

10. Are the leg braces that " Mitch " makes covered by insurance. My

wife also asked our insurance that question yesterdayand they

couldn't give her an answer either. I know I don't need them yet,

but I'm trying to plan for this disease financially.

11.What kind of expenses am I going to incur with this disease? How

should I plan for this financially? We are presently looking into

buying a larger home. We have already cut our house allowance way

back because of the uncertainty of my health.

I know I have alot of questions. It's funny, when I was first

diagnosed 2 years ago, it was a shock. But my neuro acted as if I had

a mild type of CMT. I looked like a picture of health to him. The

only sypmtom I had was the cold feet and the poor nerve conduction in

my legs, and I thought, " This is bearable and it could be alot worse " .

Now, since the other symptoms are coming on faster, it's got me

concerned and my wife is digging and researching like mad. The more

she finds out about CMT, the angrier she becomes at my neuro for

making light of it from the beginning. This site has been very, very

useful and inspirational to us since we found it. Thank you Gretchen

for all of your hard work and research.

F.Y.I. - My CMT's 1st symptom started out with bad itching on the

right side of my neck and arm years ago. Went to a dermatologist who

have me antihistamines and ointments which never worked.

Alabama

[Guest guest]

,

1. A nerve biopsy is not necessary and it is too invasive. If a doctor

does suggest one, a skin biopsy can be done. But otherwise, forget it.

2. and 3. Since you have CMT and your children may have CMT, it would

be a good idea to have the genetic testing done. Early intervention in

children can make a world of difference.

4. Yoga is good, so is swimming, other aquatic/cardio exercise, and

biking. Just pace yourself, don't overdo it. Physical therapy can get

you on track with a specially designed exercise program, just for you.

5. and 6. Yes, seek out a neurologist who actually wants to work with

you. And Greg is the best (IMO). Neither would be a waste of

money, but remember, there is only so much that can be done. Docs can

order tests, prescribe pain meds, refer you to orthopedists and

orthotists, recommend physical therapists and exercise. There is not

any doctor on this planet who can 'predict' what the course of your CMT

will be. Not even CMT 'experts'. Your doctor can order the CMT DNA test

by code from Athena Diagnostics, depending on your family history and

EMG study results.

7.and 8. The docs at the CMT conference are CMT specialists (Dr.

Shy,from Wayne State for one)

9) Look at the Athena Website for insurance coverage information

http://www.athenadiagnostics.com/content/ordering/

Athena will directly bill an insurance company for those commercially

insured patients with plans covering diagnostic testing, including

genetic testing when a gene test is ordered from Athena. The easiest

way to order for this billing method is through our Access Athena

program. Simply fax the Access Athena Commercial Insurance Requisition

to 866-223-1247 and Athena will begin the process of setting your

patient up with a convenient home draw. The home draw service is free

of charge. A home draw is the fastest, most direct way to get a sample

to Athena. However, patients who do not wish to have a home draw may go

to a hospital lab, or other reference lab to have their blood drawn and

then sent directly to Athena using our prepaid shipping kits.

Patients with a commercial insurance plan for which Athena is a

contracted provider

Patients with a commercial insurance plan for which Athena is a

contracted provider are subject to the deductible and co-insurance

obligations of their plan. For these patients, Athena will bill

insurance directly for all of our services and there will be no up-

front charges paid to Athena by the patient. Athena will forward the

appropriate notification of obligation to the patient as specified by

the Explanation of Benefits (EOB). In all instances, Athena will adhere

to the terms of the patient's individual policy insofar as payments for

services are concerned. Patients should check with their local provider

for pre-authorization and coverage questions related to our services.

Patients with a commercial insurance plan for which Athena is not a

contracted provider

Because insurance companies do not always cover the full cost of

diagnostic testing, Athena has established the Patient Protection Plan

for patients covered by commercial insurance for which Athena is not a

contracted provider.2 Ordinarily, any charge not covered by an

insurance plan for which Athena is not a contracted provider would be

billed by Athena directly to the patient, and any disputes about the

amount covered would be appealed directly to the insurance company by

the patient. However, Athena will assist the patient in managing this

process through its Patient Protection Plan.

10. Contact Ortho Rehab designs about Helios.

http://www.ordesignslv.com/cmt_guide.php However, know that Helios is

but one of many types of AFOs and what works for some, may not work for

others. You may find a local Orthotist to be helpful in this regard.

10. and 11. Financially it's hard to say. Doctor vists, medications,

can add up. So can surgery if it is ever needed. You may want to

consider living in a one story home if you have problems with stairs,

and you may want to install grab bars in the bathrooms and showers.

About the itching, keep well hydrated and use a good quality lotion

like Vaseline Intensive Care. I have dry skin and always use this

lotion which takes care of itching. Sometimes itching can be a side

effect of medications. Itching may also be caused by allergies to foods

or the environment.

About your back, a spinal orthopedist is whom you should see and

his/her evaluation will decide about the MRI most likely after Xrays.

This was my experience with my disk herniation.

Most of all, learn what you can do for yourself. Look into Vitamin C,E,

and Citicoline, eat a heart healthy diet, keep stress levels low, get

quality sleep, meditate, learn all you can about CMT, read through our

Files and Archived messages, and don't forget to play and have some fun

too

Perhaps I'll see you at the Conference!

Gretchen

[Guest guest]

,

To clarify something, Greg MD is not a neurologist. He is in

Rehabilitation Medicine - bio at

http://depts.washington.edu/rehab/contacts/carter.html

Gretchen

>

> ,

>

> 1. A nerve biopsy is not necessary and it is too invasive. If a

doctor

> does suggest one, a skin biopsy can be done. But otherwise, forget

it.

>

> 2. and 3. Since you have CMT and your children may have CMT, it

would

> be a good idea to have the genetic testing done. Early intervention

in

> children can make a world of difference.

>

> 4. Yoga is good, so is swimming, other aquatic/cardio exercise, and

> biking. Just pace yourself, don't overdo it. Physical therapy can

get

> you on track with a specially designed exercise program, just for

you.

>

> 5. and 6. Yes, seek out a neurologist who actually wants to work

with

> you. And Greg is the best (IMO). Neither would be a waste of

> money, but remember, there is only so much that can be done. Docs

can

> order tests, prescribe pain meds, refer you to orthopedists and

> orthotists, recommend physical therapists and exercise. There is

not

> any doctor on this planet who can 'predict' what the course of your

CMT

> will be. Not even CMT 'experts'. Your doctor can order the CMT DNA

test

> by code from Athena Diagnostics, depending on your family history

and

> EMG study results.

>

> 7.and 8. The docs at the CMT conference are CMT specialists (Dr.

> Shy,from Wayne State for one)

>

> 9) Look at the Athena Website for insurance coverage information

> http://www.athenadiagnostics.com/content/ordering/

> Athena will directly bill an insurance company for those

commercially

> insured patients with plans covering diagnostic testing, including

> genetic testing when a gene test is ordered from Athena. The

easiest

> way to order for this billing method is through our Access Athena

> program. Simply fax the Access Athena Commercial Insurance

Requisition

> to 866-223-1247 and Athena will begin the process of setting your

> patient up with a convenient home draw. The home draw service is

free

> of charge. A home draw is the fastest, most direct way to get a

sample

> to Athena. However, patients who do not wish to have a home draw

may go

> to a hospital lab, or other reference lab to have their blood drawn

and

> then sent directly to Athena using our prepaid shipping kits.

>

> Patients with a commercial insurance plan for which Athena is a

> contracted provider

>

> Patients with a commercial insurance plan for which Athena is a

> contracted provider are subject to the deductible and co-insurance

> obligations of their plan. For these patients, Athena will bill

> insurance directly for all of our services and there will be no up-

> front charges paid to Athena by the patient. Athena will forward

the

> appropriate notification of obligation to the patient as specified

by

> the Explanation of Benefits (EOB). In all instances, Athena will

adhere

> to the terms of the patient's individual policy insofar as payments

for

> services are concerned. Patients should check with their local

provider

> for pre-authorization and coverage questions related to our

services.

>

> Patients with a commercial insurance plan for which Athena is not a

> contracted provider

>

> Because insurance companies do not always cover the full cost of

> diagnostic testing, Athena has established the Patient Protection

Plan

> for patients covered by commercial insurance for which Athena is

not a

> contracted provider.2 Ordinarily, any charge not covered by an

> insurance plan for which Athena is not a contracted provider would

be

> billed by Athena directly to the patient, and any disputes about

the

> amount covered would be appealed directly to the insurance company

by

> the patient. However, Athena will assist the patient in managing

this

> process through its Patient Protection Plan.

>

> 10. Contact Ortho Rehab designs about Helios.

> http://www.ordesignslv.com/cmt_guide.php However, know that Helios

is

> but one of many types of AFOs and what works for some, may not work

for

> others. You may find a local Orthotist to be helpful in this regard.

>

> 10. and 11. Financially it's hard to say. Doctor vists,

medications,

> can add up. So can surgery if it is ever needed. You may want to

> consider living in a one story home if you have problems with

stairs,

> and you may want to install grab bars in the bathrooms and showers.

>

> About the itching, keep well hydrated and use a good quality lotion

> like Vaseline Intensive Care. I have dry skin and always use this

> lotion which takes care of itching. Sometimes itching can be a side

> effect of medications. Itching may also be caused by allergies to

foods

> or the environment.

>

> About your back, a spinal orthopedist is whom you should see and

> his/her evaluation will decide about the MRI most likely after

Xrays.

> This was my experience with my disk herniation.

>

> Most of all, learn what you can do for yourself. Look into Vitamin

C,E,

> and Citicoline, eat a heart healthy diet, keep stress levels low,

get

> quality sleep, meditate, learn all you can about CMT, read through

our

> Files and Archived messages, and don't forget to play and have some

fun

> too

>

> Perhaps I'll see you at the Conference!

>

> Gretchen

>

[Guest guest]

Hi Maty:  So sorry you have RA.  It reared its ugly head to me 6  1/2 years

ago.  My Rheumy has treated my RA aggressively since day one.  I inject .8 of

MTX 1x a week, I take Pred. 10 mg. daily from the beginning,  I also take the

max. of Placquenil and Sulfasalazine.  I have taken whatever is necessary to

help my RA.  My feet and ankles were hit the worst, then my hands, wrists, and

some fingers.  Since a year ago Oct. I have been in a medicine induced

remission, which means I have no RA pain or flares.  I am very grateful for

this.  How long it last I don't know, but will enjoy it while it lasts.

 

I am the type that really doesn't care what I have to take for my RA.  If it is

going to help, I will try it.  I was scared to death when I was told what I

had.  I had never heard of it before, or what it was.  I checked it out on the

Net, immediately shut off my computer and never looked again.

 

I have been battleing skin cancer for 20+ years, and I have had catarac's

removed from both my eyes due to the daily use of Prednisone.  My eyes are

perfect now.

 

We all have to decide what we will do to help ourselves feel better, and have

some kind of life.  Yes, RA has changed my life, and some things I can't do or

have learned to do differently, but I still have a good life.  I don't make any

excuses to my friends or family about what I can't do anymore.  I live one day

at a time as that is all I can handle.  I rest daily and nap also.  My Rheumy

insists on that.  I am really doing the best I can with RA.  I don't dwell on

things I can't do anymore, I am just grateful that I can do some things.  The

hardest thing for me to learn was to pace myself.  I get so tired sometimes, but

I do give into it.

 

I am glad you found our group as everyone here is so loving, kind,

knowledgeable, and so supportive.  It was the best day when I joined here.  You

can be your real self here.  Vent, cry, complain, whatever.  We all understand

as no one else can.  People who don't have RA can never understand the pain,

suffering, tiredness, and yes, even depression we get.

 

Let your children hlep you when you need help.  They are so loving and will do

anything for us when they know we are suffering.  It makes them feel good to

help us.

 

I have fallen 3 times, broke my hip, my shoulder and foot.  My feet make me very

unsteady.

If you have a cane, use it or a walker.  I have used both, but right now I don't

need anything.

 

I wish you many pain free days ahead.  I hope you have a Rheumy you love, and if

not, find one who cares about you and your treatment.

 

I will be 70 in Jan.  Pretty late in life to get RA.  I just do the best I can

each day.  What else can we really do.....

 

Hugs,

 

Barbara

From: live4evermom <matygirl3@...>

Subject: [ ] Lots of questions

Date: Monday, November 2, 2009, 10:09 PM

 

First of all I am new here and I am in the process of learning about my RA. A

little history before questions... I'm 44 and just diagnosed this year. I've had

this for years, something like 6yrs. It would hit me hard for a few months and

then go away and I felt like nothing was wrong with me. Now I've been diagnosed

because I finally got fed up with the pain and not knowing. I've been on

methotrexate for 8 months now and have gone from 6pills to 8 a week. I cut back

to 7 because of severe headaches but on 7 pills I still have headaches just not

as bad. Doctor is switching me to leflunomide. I've also just read on here that

some of you have numbness and tingling of the hands and/or feet. Both of my big

toes are numb, been that way for months.

Here are my questions... I'm a bit scared to start on anything else besides the

methotrexate of leflunomide because of the increased chances of lymphoma. Cancer

of all sorts is an old family " friend " and likes to run in our family. Are my

fears unwarranted?

I just had a cat scan today to figure out why my lymph nodes in my left armpit

are swollen. I've had swollen lymphs there as long as I can remember. Does

anyone else have problems with the lymphs?

I walk with a limp and am scared to fall. I've already fallen once. All my

joints hurt and just seem to be getting worse right now. The worst of it all is

the feet. I can't walk or be on my feet for more than 2hrs or else my feet start

cramping up, the curling toes kind of cramps. I don't dare walk barefoot. I wear

the softest shoes I can find and put those gels in them. What do you all use to

help with walking?

I've been diagnosed with RA and Fibro. Does anyone with this feel as exhausted

as I do without doing anything?

I would say I am in a major flare up right now. I'm tired, everything hurts, I'm

all swollen and I don't feel like doing anything but going to bed. Of course, I

suck it all in and keep going because I have 3 boys and the youngest is 7yrs

old.

I'm sure I can come up with more questions but I'll stop with that for now. Glad

to be on here. I've already learned a lot.

Maty in South Texas