Heriditary Parsonage Turner Syndrome
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elvenflow
- Posts: 5
- Joined: Wed Oct 29, 2014 2:48 am
- Injury Description, Date, extent, surgical intervention etc: Parsonage turner syndrome, hereditary
Heriditary Parsonage Turner Syndrome
Hello, glad to find this forum 
. I have a hereditary axonal neuropathy. Parsonage Turner Syndrome. My Dad, my Grandmother and my Great Uncle had it, that we know of. I have had EMGs and been through the mill with doctors. Just lost all my teeth (tooth issues are related) and had a really bad attack. Steroids do help me if they catch it soon enough, but they are only good short term, in my experience. I am asymmetrical, limp noticeably and cannot elevate the left arm above a 90 degree angle. Thanks to doctors being clueless I mostly see a naturopath and do alternative stuff for pain management, but would love to find a specialist who is interested in sensory neuropathies with the idea of at least providing some research data to somebody about this rare condition. My 15 year old nephew has it, as well. Would love to connect with someone who is not an immediate family member for coping skill suggestions. At the moment I have no appetite at all, which is common during exacerbations.
. I have a hereditary axonal neuropathy. Parsonage Turner Syndrome. My Dad, my Grandmother and my Great Uncle had it, that we know of. I have had EMGs and been through the mill with doctors. Just lost all my teeth (tooth issues are related) and had a really bad attack. Steroids do help me if they catch it soon enough, but they are only good short term, in my experience. I am asymmetrical, limp noticeably and cannot elevate the left arm above a 90 degree angle. Thanks to doctors being clueless I mostly see a naturopath and do alternative stuff for pain management, but would love to find a specialist who is interested in sensory neuropathies with the idea of at least providing some research data to somebody about this rare condition. My 15 year old nephew has it, as well. Would love to connect with someone who is not an immediate family member for coping skill suggestions. At the moment I have no appetite at all, which is common during exacerbations.-
Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: Heriditary Parsonage Turner Syndrome
Wow, you have come far dealing with the fact of adapting your way in life 
I do know by me and post dealing with pain , trigger so much emotional issues to
Pain and dealing with our emotional issues.
anxiety for stress and pain is a part of these injuries no matter when they happen.
It is Tough being us , What direction to do
this is a life long Quest 
For all of us by post,
After driving a semi for years with birth erbs was a very pain-full life, We all are a glutton for pain our way in are trys, remembering the positive outcome we adapted to stay positive in the face of the emotional change of our challenges in life to adapt or here genetic, by posts
It always a challenge to stay positive , when there is so much wrong around us.
We all come far by trying Keeping a grip, well , I slip to by post
We all are doing great by post,
Best thing for pain is water any way you can do it I like a hot tube and a deep massage to loosen up tight mussels and nerves,
I did this often driving a semi with birth erbs, Ouch with a smile We all try and try again You guys make me
Just Thinking
Tom
I do know by me and post dealing with pain , trigger so much emotional issues to
Pain and dealing with our emotional issues.
anxiety for stress and pain is a part of these injuries no matter when they happen.It is Tough being us , What direction to do
this is a life long Quest For all of us by post, After driving a semi for years with birth erbs was a very pain-full life, We all are a glutton for pain our way in are trys, remembering the positive outcome we adapted to stay positive in the face of the emotional change of our challenges in life to adapt or here genetic, by posts
It always a challenge to stay positive , when there is so much wrong around us.
We all come far by trying
Keeping a grip, well , I slip to by post We all are doing great by post,
Best thing for pain is water any way you can do it
I like a hot tube and a deep massage to loosen up tight mussels and nerves, I did this often driving a semi with birth erbs, Ouch with a smile
We all try and try again You guys make me Just Thinking
Tom
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elvenflow
- Posts: 5
- Joined: Wed Oct 29, 2014 2:48 am
- Injury Description, Date, extent, surgical intervention etc: Parsonage turner syndrome, hereditary
Re: Heriditary Parsonage Turner Syndrome
I'm not sure if its in board policy to mention what I do, but I am in Oregon 
and it helps a great deal. Did have to do a steroid burst with the most recent exacerbation, then I got shingles....
and it helps a great deal. Did have to do a steroid burst with the most recent exacerbation, then I got shingles.... -
Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: Heriditary Parsonage Turner Syndrome
Very interesting :
Its more about , Hugs in trying to adapt here,
Just help here is needed,
Judgement of a post or find away to have a life with , what ever Just post to help, Yeah. Giving a helping hand , and lack of response, happen to
Here is more about sharing,
We all try to help here, Will it help????
No clue, but Hugs
Tom
:Its more about , Hugs in trying to adapt here,
Just help here is needed,
Judgement of a post or find away to have a life with , what ever
Just post to help, Yeah. Giving a helping hand , and lack of response, happen to Here is more about sharing,
We all try to help here,
Will it help????No clue, but Hugs
Tom
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Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: Heriditary Parsonage Turner Syndrome
This is interesting thing
I have issues in gramer and being redoneant,
NO one cares brcause we try to help our way There is a Non Judgement in trying here
Tom
I have issues in gramer and being redoneant,
NO one cares brcause we try to help our way
There is a Non Judgement in trying here Tom
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Heriditary Parsonage Turner Syndrome
"elvenflow",
I "got Oregon..."....we get pain relief any way that works for us individually!.
Hugs<<<<HUG))))))
"gramma" Carolyn J
LOBPI/76
I "got Oregon..."....we get pain relief any way that works for us individually!.
Hugs<<<<HUG))))))
"gramma" Carolyn J
LOBPI/76
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elvenflow
- Posts: 5
- Joined: Wed Oct 29, 2014 2:48 am
- Injury Description, Date, extent, surgical intervention etc: Parsonage turner syndrome, hereditary
Re: Heriditary Parsonage Turner Syndrome
Nerve disorders sure are individual, that is for sure. My grandmother tried everything including radiation and gold salts, back in the day. Hydrotherapy at an old time spa was amazing, she used to tell me about her visit to Germany.
I wish there was more awareness of this. Dad's arm first became paralyzed when the got a morphine shot for a gallstone attack, and doctors just acted confused. If we can post pics I have great comparisons of mine and Dad's facial asymmetry, pretty trippy because we look like identical twins, not parent and child. Genes are amazing, except they do tend to mess up!
I wish there was more awareness of this. Dad's arm first became paralyzed when the got a morphine shot for a gallstone attack, and doctors just acted confused. If we can post pics I have great comparisons of mine and Dad's facial asymmetry, pretty trippy because we look like identical twins, not parent and child. Genes are amazing, except they do tend to mess up!
