Foot pain on outside of foot

[Guest guest]

Gretchen:

Thanks for the tip. My referring doctor from Physical Medicine

assures me that all of the Podiatrists at Kaiser have orthopedic

training...but I am beginning to think that I am going to have to

look for someplace outside of Kaiser (MDA?) where the doctors are

more familiar with CMT and where I would the specialists I would go

to for each CMT related problem would actually be familiar with CMT.

I imagine that a facility like that would not be easy to find. But

Los Angeles is a big place and I am looking into it.

Ken

[Guest guest]

Gretchen:

Thank you for the information on Dr. Sellman. I guess it makes

sense

for me to see Kaiser's Podiatrist first (at the cost of my $10

co-pay) on the chance that he/she might actually know something

about CMT and my particular foot problem. If they are not familiar

with CMT or if they give me advice that doesn't sound right, having

a knowledgeable Doctor to go to as a backup will be great.

I gather that you have located a number of specialists over the

years. I guess I'm naive, but I would have figured that there are

enough conditions (like CMT) causing peripheral neuropathy, and

enough people suffering from them, that there would be facilities

specializing in " head to toe " treatment. I know that there are

offices that claim to specialize in the treatment of chronic fatigue

and fibromyalgia symptoms. I would think that the need for CMT

treatment is more compelling. But what the heck do I know?

Ken

[Guest guest]

I have the same pains and the same knot on my right foot. Once a year my

orthopedic x-rays my feet and every year he says well it isn't getting worse. He

tells me surgery could cause more problems and as long I can handle the pain

with my Neurontin and Elavil we should wait. Tt drives me crazy if I am in my

shoes and AFOs for long periods of time, like last night walking around our

county fair. It was nice to see I won 3 first place ribbons on my craft entries

but the pain from that foot kept me up all night. I guess for now I would

suggest moderation as for as walking a lot and find a good orthopedist they are

more qualified than podiatrist, I found this out the hard way when I first had

problems. Oh just so you know I am also about to turn 52 and I wasn't diagnosed

right until after I was 44. Good Luck.

Cathleen in Arkansas

[Guest guest]

:

I have a " knot " similar to what you describe on the outside of one

of my feet. I believe it is caused by the weakening of my ankle and

the fact that I lean a little to the outside. This side of my body

(right) seems to be more affected by the CMT - it is my weaker side

altogether. This knot used to get sore due to too much pressure, or

weight bearing, on that side. I now wear an AFO on this leg and the

knot is getting smaller and is never painful. With realignment of

my leg, hence, the relief to the outside of the foot! Do you wear

any kind of AFO or have an orthotic in your shoe? If not, you

should ask your Dr about this and consider seeing an orthotist for

proper fitting of orthotics/AFOs and the proper shoes to go with

them.

Once I finally accepted that I needed to wear the AFO life has been alot more

pain free. I also am much more ambulatory with my AFO. People seldom realize I

have a disability unless they hear me talking about it. Then they are usually

quite amazed at the difference in my abilities with the AFO and without it.

Good luck in finding the right doctor. Try not to get discouraged - CMT is

manageable.

[Guest guest]

:

I suspect that you are 100% on target. Your experience sounds so

similar to what I have been recently experiencing. I do not

currently use an AFO, but I suspect that is going to have to change

in the very near future. It is very encouraging to hear that you

have gotten relief from the pain, as I would like to be able to

incorporate walking back into my exercise routine (such as it is).

Thanks for sharing. As I get used to these new problems and lifestyle

changes, one of the things that helps keep me sane (somewhat) is

knowing that there are others who are going through the same

situation and have been able to cope with the changes.

Ken

[Guest guest]

Cathleen:

I have promised myself that I am going to avoid surgery if at all

possible. But this problem has cropped up rather suddenly (at least

I have only noticed it over the last month or so) and it has been

getting worse pretty quickly so I know it is something I can't

ignore. In order to see anyone other than a podiatrist I may have to

go outside of my Kaiser HMO...and so cost will be a factor. Gretchen

has some recommendations for me, I think, regarding facilities that

work with CMT patients and I will be following up on her leads.

Thank you for your moral support.

Ken