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Welcome Barb, thanks for introducing yourself. I have no inflammation

with my CMT.

However, ever since I was about 7, my feet have always felt like they

were burning (on the bottoms - off and on) I use cold packs and love to

walk on the tile also for a cooling effect. I have also used BioFreeze

on occassion.

Perhaps you might want to research CDIP - Chronic Demyelinating

Inflammatory Neuropathy for your question on inflammation.

~ Gretchen

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  • 6 years later...
  • 5 months later...

Mark,

Thanks for the info however CHOP is where we have been having so many issues. It

took me 2 months to get a return call for an appt and then they canceled it on

us the night before. I prefer not to deal with them.

Thanks again for the suggestion!

Barb

Re: Welcome Barb

Hi Barb and welcome!

I never presume to second-guess our beloved expert Gretchen, but I have a slight

correction to make on her doctor recommendation.

I have met Dr. Scherer on a number of occasions. I wish I knew him earlier in my

journey with CMT. I have to point out that Dr. Scherer only treats adults.

There is another CMT Center of Excellence next door at CHoP led by Dr.

Finkel. This is the link to his info.

http://www.med.upenn.edu/apps/faculty/index.php/g324/p1516

I do not know Dr. Finkel as well, but I have met him. Again, had we met him

sooner, we might have sought his help to for our son.

Instead, we travel to Detroit each year to see Dr. Mike Shy at the Wayne State

University CMT Clinic. His contact info is:

http://wsupg.med.wayne.edu/view.php?id=P0JF0SG2RL

We live in NJ and make that trip to Detroit each summer. It is by far worth the

trip, but the Philadelphia docs are top notch as well!

We are always here for you!

Mark, 48, CMT1A, NJ

>

> Hi Barb,

>

> A very warm welcome to you and your daughter. As for the pains, has anyone

mentioned a medication? I hope we can be of help to you and your daughter here

at . Many Moms and Dad's to offer their experience, plus those of us who

grew up with CMT from childhood.

>

> As for a CMT Dr. try this one - he knows his stuff

> http://www.med.upenn.edu/apps/faculty/index.php/g324/p11842

>

> Gretchen

> So. Calif.

> Diagnosis at age 10

>

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Hi Barb,

I cannot recall how old you said your daughter was, but I have

personally seen Dr. Scherer politely turn down seeing a youth and refer

them to Dr. Finkel. Dr. Finkel does have CMT Clinic days, I can look

into that further. They are by appointment and are specific days.

Perhaps if you reached out specifically to him and explained your issues

you might get better results. Both are awesome, but Dr. Scherer really

does stick to adults. Also, neither of the Philadelphia clinics are

" free " clinics, so if insurance does not cover it, you will be billed.

The Wayne State Clinic is covered by CMTA and MDA grants, so they do not

bill you for anything your insurance does not cover. Just another

thought to share if this helps you in a decision to go to WSU. They too

are months out in appointments because they do the clinic one day a

week.

Mark

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