FAQ/Help |
Calendar |
Search |
Today's Posts |
10-02-2012, 02:03 PM | #1 | |||
|
||||
Member
|
|
|||
Reply With Quote |
"Thanks for this!" says: |
10-02-2012, 02:25 PM | #2 | |||
|
||||
Wisest Elder Ever
|
This is interesting... I'll add it to our Mitochondrial thread here.
Thanks for posting it.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
Reply With Quote |
10-02-2012, 02:30 PM | #3 | |||
|
||||
Member
|
Thanks!
Sorry, I did not realize that there was already a Mitochondrial thread. I Should have searched 1st. Ready, Fire, Aim! :-) |
|||
Reply With Quote |
10-02-2012, 02:58 PM | #4 | |||
|
||||
Wisest Elder Ever
|
That is okay, I am used to moving stuff around here. No problemo!
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
Reply With Quote |
10-02-2012, 06:13 PM | #5 | ||
|
|||
Member
|
Love the fact that they mention height as a problem. Neither of my neurologists mentioned my height as a complicating factor, but as a 6'2" woman with a 36" inseam, nerve impulses have quite a trip to make. My wingspan is 78". Only my podiatrist said that my height definitely made my condition worse. The article doesn't mention hereditary neuropathies, but I have to assume it doesn't help my symptoms or progression.
|
||
Reply With Quote |
10-02-2012, 07:48 PM | #6 | |||
|
||||
Member
|
Quote:
I'm 6'1" so I feel your pain... |
|||
Reply With Quote |
"Thanks for this!" says: | Susanne C. (10-02-2012) |
10-03-2012, 05:58 AM | #7 | |||
|
||||
Wisest Elder Ever
|
Quote:
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
Reply With Quote |
"Thanks for this!" says: | Susanne C. (10-03-2012) |
10-03-2012, 07:02 AM | #8 | ||
|
|||
Member
|
Quote:
Neither neuro suggested Marfan's, and other than extremely high triglycerides I do not appear to have any heart disease markers. I think one of us probably should be tested. Everything I have read about Marfan's seems to indicate more of a discernible, serious heart condition. If you think it can be hidden I should get tested for the children's sake. I already have guilt over passing this (CMT) on to at least one of them. |
||
Reply With Quote |
10-03-2012, 07:10 AM | #9 | |||
|
||||
Wisest Elder Ever
|
I knew a family of Marfan's from one of my jobs.
The women seem to have less obvious "symptoms" than the men. The woman (Mother) I worked with had dilated aorta when pregnant only, and that was her only symptom which was silent. Her daughter who is very tall -over 6ft, (mother is 5'8") had a ligament problem in her ankle. She twisted it, and it never seemed to heal from the sprain, and eventually a year later limping around, she went to an orthopedic surgeon, who said her ligament dissolved away after the injury (maybe due to the Marfan's genetic contribution). She had a reconstructive thing done where a partial tendon was taken from her thigh...and I don't know if that worked for her, as I retired and left that job. There was also a Mystery Diagnosis show on Discovery once about a woman with "hidden" Marfan's. She was only diagnosed after one of her sons was tested. She was completely asymptomatic. But I wonder with your PN, if there is some connection involving the tendons, and collagen affecting the nerves etc? I think it is worth following up upon, given that the gal I knew had a ligament totally dissolve away, and that created great pain for her. She was only 20 yrs old!
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
Reply With Quote |
"Thanks for this!" says: | Susanne C. (10-03-2012) |
10-03-2012, 07:25 AM | #10 | |||
|
||||
Wisest Elder Ever
|
Susanne, I'm going to send you some links via PM later today.
I am finding interesting papers, that may help you.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
Reply With Quote |
"Thanks for this!" says: | Susanne C. (10-03-2012) |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
TOS video by Freischlag at Johns Hopkins | Thoracic Outlet Syndrome | |||
Back from Johns Hopkins | Myasthenia Gravis | |||
Dr. Griffin at Johns Hopkins - Has Passaed Away | Peripheral Neuropathy | |||
my follow-up at Johns Hopkins | Multiple Sclerosis | |||
HiCy/Revimmune at Johns Hopkins | Multiple Sclerosis |