RE: New to this list - Allan - MYOCLONUS

[Guest guest]

Allan,

Your post sparked my interest, because the symptoms you describe sound very

similar to what my father has finally been diagnosed with after months of

testing, particularly with respect to muscle twitching. Search for

resources on MYOCLONUS under movement or neurological disorders on the

internet, and see if this rings true for your circumstances. Here is one

site to get you started:

http://accessible.ninds.nih.gov/health_and_medical/pubs/myoclonus_doc.htm

Lets know how you get on.

Regards,

Savage (Queensland, Australia - son - 8 yrs - complex IV

mito)

[Guest guest]

Sorry to hear that they forgot to send the labs off. The same thing happened

to us, we waited 3 months and then they told me that it wasn't sent, the

pathologist had 101 excuses why the last one being that " your daughter has a

disease that there is no cure for, so know one wants the pay the shipping

fee " . What kind of excuse is that, even with more arguing it took another 2

weeks to get it sent. We turned them into the medical board, and she is

under investigation. If I were you I would follow up and make sure that lab

gets out.

Heidi

[Guest guest]

Sorry to hear that they forgot to send the labs off. The same thing happened

to us, we waited 3 months and then they told me that it wasn't sent, the

pathologist had 101 excuses why the last one being that " your daughter has a

disease that there is no cure for, so know one wants the pay the shipping

fee " . What kind of excuse is that, even with more arguing it took another 2

weeks to get it sent. We turned them into the medical board, and she is

under investigation. If I were you I would follow up and make sure that lab

gets out.

Heidi

[Guest guest]

Sorry to hear that they forgot to send the labs off. The same thing happened

to us, we waited 3 months and then they told me that it wasn't sent, the

pathologist had 101 excuses why the last one being that " your daughter has a

disease that there is no cure for, so know one wants the pay the shipping

fee " . What kind of excuse is that, even with more arguing it took another 2

weeks to get it sent. We turned them into the medical board, and she is

under investigation. If I were you I would follow up and make sure that lab

gets out.

Heidi