Old 10-06-2008, 05:14 PM #1 (permalink)
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Default update from doctor's today-long, whiny post, please forgive me

So I posted yesterday and received several helpful replies. I cannot
thank you enough for taking the time to respond. The single
fasciculation is still in my right calf with various others mainly in
my legs, even my buttocks (TMI?) but the majority are in my right leg.
The one in my right calf is in the front and anyone can see it if they
look at my leg; they don't even have to look closely.


I broke down in tears (flowing, chin quivering, crying) to my
doctor today regarding my hip (ortho doctor) and he decided that
instead of a local neuro I should go to the University of Alabama in
Birmingham (UAB) which is an hour away. He named the doctor (cannot remember?) and said
he specializes in neuro muscular diseases and has an excellent
reputation with EMGs?

I am not ordinarily a cry baby. Ask my ob-gyn who has been through a
very rough pregnancy with me and several miscarriages and two
surgeries. He says he is always amazed at my strength. Well, I think I have
used it all up.

So my doc is also sending me for a full body bone scan on Wednesday. He is
very concerned about my hip after a year of this.

We covered a lot of things that could be coincidental and he said he
is going to mention them to the doctor he is referring me to. Here is
the list:

SMA in my family (two uncles and one nephew-nephew was type 1 SMA died
before age 1)
MY history of Cardiomyopathy and Congestive Heart Failure
My two eye muscle surgeries (one as a baby on both eyes, and one as
an adult in one eye)
My daughter's eye muscle syndromes (DVD and Brown's)
And the bizarre symptoms that I am experiencing now.

He remains concerned about the clonus he found two months ago.

Deep breath.

He says, as I feel, that these may all be coincidental in our family
or there could be some sort of other myopathy going on with me that
ties in with the hip pain, the fasciculations and the neck pain.

The neck pain is horrible. It feels as if my head is just too heavy
for my neck to hold. I know my brain is average size

I dread tomorrow. I have tons of driving to do and that is when all of
these things seem worse, turning my head, hip pain after sitting for
so long (can barely walk afterwards).

I feel like my body is older than my 95 year old grandfather's!

I am 41, almost 42. THIS SUCKS. I don't want more pain meds, I want to
figure out what the root cause of this problem is.
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Old 10-06-2008, 06:02 PM #2 (permalink)
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Default

Hang in there, Jenn. It's great that you have an appointment so quickly at an academic institution. You will be in good hands. Let us know what is found and certainly feel free to ask us questions.

Take care.
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Old 10-06-2008, 06:29 PM #3 (permalink)
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Jenn, I hope the visit tomorrow goes well. I sure feel for you having to make that drive when you're feeling so lousy. Take it as easy as you can.

Hang on,
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Old 10-06-2008, 07:23 PM #4 (permalink)
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Hello Jenn! Sending some prayers and (((hugs))) your way that everything goes well!
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Old 10-07-2008, 05:38 AM #5 (permalink)
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I am sitting here in tears (yet again) because you all have been so kind. Thank you again and again and again!
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