Question about braces, falls, pain, disability, etc...

[Guest guest]

Hi everyone -

I haven't posted in a really long time...I'm 36 yrs old, have CMT type 1A, have

had symptoms since infancy. Had achilles release on R leg at 15 mos, bilateral

achilles release and plantar fascia release at 10 yrs. No surgeries r/t CMT

since then, but multiple sprains of knees and ankles over the years. Was able

to play sports in high school, though, and was very functional for many years.

Went downhill fast during my last pregnancy, 3 years ago, with twins. Had

significant pain during the pregnancy, weakness and numbness in my hands/wrists

(which at the time I thought was carpal-tunnel r/t pregnancy), etc. Had

somewhat of a recovery period after the pregnancy, but then had major

complications for a couple years r/t my tubal ligation, leading to a

hysterectomy in March of last year.

After that pain was dealt with, it became clear that my CMT was progressing

rapidly. I began falling more often, my numbness in both feet and both hands

was getting worse, the pain was getting worse, the weakness was getting really

bad - I was noticing it most drastically in my hands, b/c I am a big crafter,

and I started not being able to do pinning anymore for sewing, or p/u small

objects. Can't button my clothes, can't zip things, can't open bottles or jars,

etc. Also the cramping has gotten bad.

My neurologist has been good about working with me, and we've tried different

meds, though she's not a CMT expert (by her own admission), and so far, I just

don't feel like we've found the right combo. I tried Lyrica - HATED it for the

weight gain and it didn't really help enough with my symptoms to make the weight

gain worth it. So right now I'm on Topamax for migraines, Neurontin for the CMT

pain (and can't really even take the dose prescribed b/c it makes me too sleepy

- 900 at night, then another 900 during the day - usually I can only manage 300

or maybe another 300 later in the day), Klonopin for the cramps (which I think

doesn't totally help, plus is habit-forming and I think I've developed a

tolerance to it b/c it's not helping as much now as it did when I first started

it); and Vicodin also for pain (more on that).

I've just started with a Pain Management program - it's an integrated approach,

with a pain psychologist, a physical therapist, and a doctor. I've seen the

first two, and now have my appt with the doc coming up this Friday...can't wait,

b/c the Vicodin is NOT cutting it for me. I need something longer lasting - not

something that wears off after 3 hours, plus I need something that doesn't have

tylenol in it - way too much tylenol I'm taking between that and my migraine

pills!! Gonna kill my liver! Like I told the psychologist, I know it's

probably not possible to totally get rid of my pain, but I just want to get to a

place of being able to focus on my kids and my LIFE again, and not feel like I'm

constantly being distracted by PAIN!!!! I'm also going to ask about

acupuncture, b/c I think my insurance covers it, if prescribed by the pain doc.

But what pain meds (besides the ones I've mentioned) have you all found to be

helpful?

And then there's the falling...and the need for braces. I got referred by my

neurologist to get eval'd for leg braces. At first, I assumed it would just be

for AFO's...which I was concerned about b/c the last time I tried AFO's (about 5

years ago), I had an allergic reaction to something in the plastic, and within 4

hours of wearing them, had hives all over my calves.

Meanwhile, I still haven't got my appt with the orthopedics place...but while

I'm waiting, I've fallen 3 times just in the last 2 weeks, and this last fall a

few days ago landed me in Urgent Care with a severely sprained ankle. The doc

was actually concerned it was broken based on where I was tender and swollen,

but thank goodness it wasn't. The problem is, the way I fell, it was b/c the

muscles above my knee on the other leg gave way (b/c of weakness) and my knee

gave out, so I came down on my ankle really hard - and it was turned under

(thanks to that wonderful sense of perception). So now I'm wondering if I need

some kind of brace other than AFO's that's also going to give more support...to

help with the weakness in my upper legs as well.

I remember reading on here a few years ago about some kind of wonderful brace

many of you had gotten...but I can't remember the name of it, and I wanted to

have it written down before I go to the orthopedics eval, so I can ask about it.

Finally, (I know, sorry for the long post!)...I applied for permanent disability

back in June, and got notice in November that they denied me for medical reasons

(claimed they found no impairment in my limbs!!!). My neurologist was

infuriated FOR me!! I appealed, obviously, the same day I received the notice,

but they have another 120 days from that day, to make a decision on the appeal.

The first time around, they made me see a doc of their own - in some run down,

dirty, crappy clinic - it was awful. She had a horrible attitude and I could

almost tell right away she was going to give a bad report and I was going to get

denied. She never even LOOKED at my hands, to see how completely wasted they

are and how there's NO muscle left in them - I can hardly HOLD a pen anymore,

and when I try, my hand cramps up almost immediately. Typing (like now!) makes

my wrists hurt like heck and my hands go numb. I obviously can't be on my feet

much or walk far without ending up on the ground! I had actually JUST fallen

that morning of my eval with her - my knees were all bloody and skinned up from

my fall - she DID see THAT - but I guess that didn't matter!

So...what success (or failure) have you all had with Social Security and the

disability application process with regard to CMT? I'm just waiting now...they

have until March to make a decision again.

Thanks in advance for any help you all can provide!!

Jen