new to forum with Parsonage Turner Syndrome (aka Brachial Plexus Neuritis)
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Jordansmom
- Posts: 37
- Joined: Mon Oct 03, 2005 1:54 pm
Re: new to forum with Parsonage Turner Syndrome (aka Brachial Plexus Neuritis)
Thank you, Richard, for that link. Re: Pain. The first time Jordan was afflicted (that I am aware of as from infancy through pre-school years he had numerous "issues" that physcians could not figure out)it was his left arm---shoulder to fingers. It lasted 9 months, he was 6. No pain that we are aware of. The second time he was afflicted was the opposite right arm. Extreme pain for about 2 months, unbearable for him. He was 8. I, too, am convinced that he has HNA but since I am adopted there is no family history. I have had some unanswered problems but none as severe as yours or Jordans. Anyway, keep strong....Thanks for the link. I shall email you.
Re: new to forum with Parsonage Turner Syndrome (aka Brachial Plexus Neuritis)
Hi-
The way this study came about for me is that a reader of my blog told me about it. I recognized the names of the doctors doing the study from many web-pages I had seen out there on HNA. They have done this before, so I contacted them with my basic history. They had me send in examples of paperwork from various doctors I had seen. Then they had me send in a blood sample. So far, that is all that has happened. At least now I know I am waiting for something that will be somewhat official.
HNA can have pain-free episodes. You still get the muscle wasting and other symptoms, just not the severe jolt of pain that can start them. I have learned a bit since I talked to you long ago. Along the lines of the pain free episode, I think this may be what a family member of mine has had a few years back. Because of the hit and miss nature of HNA, this attack looked like something else to them because it impacted more than one plexus site. They are convinced that other disease is what they had, and that I am crazy to suggest otherwise. Their symptoms are nothing like mine (but well within the symptom possibilities of HNA.) I had another sibling who has had undiagnosed leg pain that also could have been HNA related. It can do so much more than just hit the shoulders.
Email me when you can. My address is on the profile here.
> Thank you, Richard, for that link. Re: Pain. The
> first time Jordan was afflicted (that I am aware of
> as from infancy through pre-school years he had
> numerous "issues" that physcians could not figure
> out)it was his left arm---shoulder to fingers. It
> lasted 9 months, he was 6. No pain that we are aware
> of. The second time he was afflicted was the opposite
> right arm. Extreme pain for about 2 months,
> unbearable for him. He was 8. I, too, am convinced
> that he has HNA but since I am adopted there is no
> family history. I have had some unanswered problems
> but none as severe as yours or Jordans. Anyway, keep
> strong....Thanks for the link. I shall email you.
The way this study came about for me is that a reader of my blog told me about it. I recognized the names of the doctors doing the study from many web-pages I had seen out there on HNA. They have done this before, so I contacted them with my basic history. They had me send in examples of paperwork from various doctors I had seen. Then they had me send in a blood sample. So far, that is all that has happened. At least now I know I am waiting for something that will be somewhat official.
HNA can have pain-free episodes. You still get the muscle wasting and other symptoms, just not the severe jolt of pain that can start them. I have learned a bit since I talked to you long ago. Along the lines of the pain free episode, I think this may be what a family member of mine has had a few years back. Because of the hit and miss nature of HNA, this attack looked like something else to them because it impacted more than one plexus site. They are convinced that other disease is what they had, and that I am crazy to suggest otherwise. Their symptoms are nothing like mine (but well within the symptom possibilities of HNA.) I had another sibling who has had undiagnosed leg pain that also could have been HNA related. It can do so much more than just hit the shoulders.
Email me when you can. My address is on the profile here.
> Thank you, Richard, for that link. Re: Pain. The
> first time Jordan was afflicted (that I am aware of
> as from infancy through pre-school years he had
> numerous "issues" that physcians could not figure
> out)it was his left arm---shoulder to fingers. It
> lasted 9 months, he was 6. No pain that we are aware
> of. The second time he was afflicted was the opposite
> right arm. Extreme pain for about 2 months,
> unbearable for him. He was 8. I, too, am convinced
> that he has HNA but since I am adopted there is no
> family history. I have had some unanswered problems
> but none as severe as yours or Jordans. Anyway, keep
> strong....Thanks for the link. I shall email you.
Good Luck!!!
Richard
Richard