My Introduction

[Guest guest]

Hello!

I’m Juli, and new to the group… I read some of the posts,

and want to say what a nice group of people you are!

I’ve been tripping and falling since my early 20’s, and was

(am!) known for generally being clumsy. When I was working, it was not uncommon

for me to have to go back in the house and change after falling on my way to the

car and getting grass stains on

the knees a few times a month. I would always joke, “I’m 30 (35, 38, 40…) and

still skinning my knees like a kid!” I can also magically trip over “nothing!”

I had surgery for a hammer toe a few years ago on the big

toe of my right foot, and honestly had attributed my increasing instability to

the toe. I lovingly call it entoe

for the scar down the middle!

I’m 41 now, and since my falling has been a part of my life

for so long, it never occurred to me to mention it to my doctor! However even

standing still was getting to be a challenge (like standing in line, not to

mention just standing talking to

people…), so I recently asked my doctor if she minded if I used a cane (I have

one or two already from all the sprains….) for general balance. She is GREAT.

After I explained to her about my toe being the cause (funny now!), she gave me

some balance and motor tests, and referred me to physical therapy and neurology.

I had no idea I’d end up here with you good people only a

few weeks later, believe me!!

The PT explained that I had nerve damage on (this and that)

nerves, and that the muscles in my right foot and calf were atrophied. I had

not noticed before! I left with some exercises,

and I’ll have another appt. with him soon.

The neurologist is a very nice man, and he reminds me of an

oncologist I used to be a nanny for many years ago. Anyway, during the exam he

put something on my foot and asked me what it felt like. I said it feels like

something is touching my foot. And he said but what does it feel like? And I

said, like something is touching my toe. **LOL** It was like a comedy routine –

I didn’t understand the question! The correct answer, by the way, was “it feels

like a vibration.”

Which, obviously, I didn’t feel – but in either foot, which surprised

me.

My last visit, he did a NCV (or is it NVC?) test where he

zapped (ouch!) my right arm and leg, to measure the nerve velocity. Normal on

the arm; no reading at ALL on the leg. Completely flatline. Also, it felt more

like a pinprick than an

electric shock – which was fine with me! He checked the other leg after that –

also flatlined, but so far the left leg seems to be fine – to me anyway.

My mother was with me for the visit (Sweetie was on a fishing trip…), so

naturally I offered up her leg to get zapped in case the machine was broken! Hee

hee hee – we laughed, and then he looked at her foot, and saw HER high arches

and hammer toes, also.

Until I checked online for “hereditary neuropathy” I had no idea that

was actually a symptom of CMT! For the record, that’s her only symptom that I’m

aware of – her balance seems to be fine.

Oh – I checked for hereditary neuropathy after he mentioned

several times that it “might be something I was born with.” He also referred me

for an orthotic fitting for “foot drop.” I’m using a cane now and just LOVE it!

I feel so much more confident even getting to the car now!

I just had a blood test sent to Athena Labs for genetic

testing. The neurologist never mentioned CMT to me (I peeked on the lab slip),

but it’s obvious I found it through my web search when I saw a picture of MY

foot and MY leg!

So, I’m not officially diagnosed yet, but that’s all that

remains as far as I can tell, from the research I’ve done and my own history of

symptoms… I’ve been treated for

Fibromyalgia for probably 8 or 9 years, and an autoimmune thyroid disease for a

little longer than that. My medical record doesn’t really need another

“diagnosis,” but now I wonder if this isn’t the root cause of the whole mess!

Hope this isn’t too long for an intro, and I’m looking

forward to getting to know the members of the group!

~ Juli