new to forum with Parsonage Turner Syndrome (aka Brachial Plexus Neuritis)

[rbwalton]

Hi All
I am new to the group. I first started having problems in 2000, when my right thumb and index finger became partially paralyzed. That was originally diagnoses as anterior interosseus nerve syndrome. I should have known it was not quite the correct diagnosis because I did not fit any of the causes for that. Doctors wanted to do tendon transfers at that point. I waited, and ended up regaining most use of my index finger and movement of my thumb a couple of years later without surgery. I still have no strength in my thumb, and grip strength of the hand is not great.
While I was working on getting my thumb better- or at least hoping I still had a chance of that happening- I noticed one day in Oct 2006 that my right shoulder felt loose. There is no better way to describe it. It just had too much play in it. After having this go on for a few days, I developed a nasty case of tendonitis in the right shoulder, and went to see a doctor. They did not notice anything particularly wrong, but put me off work for a few days since I could not lift my right arm at all. When I returned to get an OK to return to work, once again they did not notice anything odd. Since I could again lift my arm, they said I could go back to work. I returned for a checkup a couple of weeks later, and the clinician noticed that my right scapula was winging. I still had the sensation of the joint being too loose, so I figured eventually they would find something wrong. I really do not know if they had just missed it before, or of it just took that long for the scapula to drop. They again had no idea what was happening. They asked if I had any trauma recently to my long thoracic nerve, but I had not.
I did a search on the internet, and found the Parsonage Turner Syndrome (or brachial plexus neuritis) explained my winged scapula, and the past problem to my right had also. My doctors would not listen to my findings.
They followed up with doing MRI of the shoulder that verified that it was collapsed, and prone to impingement syndromes. But, a nerve conduction test found no impingement. In fact, the “doctor” who did the nerve test pronounced that my nerves being fine, I must have a muscle disease- even though his test also verified that my muscles were responding. This tuned into a mess. They forced me into a 700 mile round trip to a specialist who confirmed that I had brachial plexus neuritis just as I suspected.
Somewhere in this time, I realized I had Thoracic Outlet Syndrome. That seems to go with the shoulder collapse, and tends to limit my use of my arm above my head, since the blood stops flowing if I raise my arm too high.
Since acute brachial plexus neuritis does not seem to recur very often, I must conclude I have the genetic version, even though my family history would not suggest this. It does not really matter anyway, since I have had two flare-ups, I will likely have another- whatever the cause.
I am learning to live with this. I would love to be able to grasp things right handed. I tend to drop things as it is. If I am lucky, the things I drop are not breakable, or if they are- no one is there, and I can blame the cats for the damaged items. Dropping things in public is not so easily explained. Of course my doctors think I am dropping things because I am not using my right arm and hand enough. You see of course, if I was not using my right arm and hand, I would not be dropping anything. I am afraid though, that I am over doing things left handed. You cannot win with this, and doctors seem to be clueless. Even if they know what it is, they do not seem to understand it.
Thanks for reading this.
Richard

[ptrefam]

Richard,
Sorry to hear of your plight with this. As you say, yes, many drs that are not familiar with BPI just don't know how to recognize or treat it. Even though you were put out by traveling to see a BPI specialist it is the best thing you can do for your symptoms. You really need to be seen and followed by a specialist in BPI. While a nerve conduction test is often used they are open for interpretation by the dr administering the test and not 100% acurate. Many BPI's are treated with therapies and this may be a good thing for you to check into. Best of luck and hope you can find some answers.

Sue

[joy donohoe]

hi richard sorry to hear what you have been going through, doctors can be so frustraiting,my son to has bpn and can not get any help or info in this country,have you heard of stem cell treatment we are heading abroad hopefully in the next few months fpr the treatment also look into nerve transplants doctors wont tell you any thing thank god for this web site best of luck.
joy

[rbwalton]

My doctors where I live are not well informed at all. They first thought I had muscular dystrophy, even though I had given them my diagnosis I had found on the internet of Parsonage Turner Syndrome (Also known as BPN) Oh, your symptoms do not match that. Well, they did match, if anyone had looked them up, and muscular dystrophy was not even close. So, my three trips out of town have confirmed it is in fact, BPN. Recently an out of town doctor suggested I get an MRI of my neck- finally. I told that to my doctor up here, and he said, "so this doctor thinks your BPN is caused by something in your neck?" Well, I do not think I would ever trust my doctors here before this, but now I am sure of it. Where do they think the brachial plexus is?

So, keep us up to date on the stem cell stuff. It sounds intriguing, even though not as much research is being done as should be.
Good Luck!
Richard

[Jordansmom]

Hello again, Richard. I just wanted to send you a quick note to tell you that I found Jordan's papers from 2 years ago. He was tested for HNP and it came back negative. Dr. Kozin believes that he has HNA which is different. The test was out of pocket (insurance wouldn't pay for it) It was a simple blood test via Athena Labs and cost $399.

Keep the faith.

Donna

[rbwalton]

Donna and all-

My official diagnosis is now Neuralgic Amyotrophy, and I suspect it might also be the hereditary version, but not 100% sure yet. There are just enough odd stories in my family (other than mine) about pain that could have been attributed to NA or HNA if anyone knew to look for it. It went either diagnosed as other weird things, or undiagnosed. The more I look at sites that describe it, the more convinced I am it is HNA. I should know for sure at some point, as I am now in a study about HNA. Check out my blog for more info.

Richard

http://parsonage-turner-syndrome.blogspot.com/



> Hello again, Richard. I just wanted to send you a
> quick note to tell you that I found Jordan's papers
> from 2 years ago. He was tested for HNP and it came
> back negative. Dr. Kozin believes that he has HNA
> which is different. The test was out of pocket
> (insurance wouldn't pay for it) It was a simple
> blood test via Athena Labs and cost $399.
>
> Keep the faith.
>
> Donna

[Jordansmom]

Hi Richard!

HNA is what Dr. Kozin's team at Shriner's came up with for Jordan. There are no real "tests" to confirm this, however, if you read all of the data and if things seem to "click" for you, your family, than it might just be it. You mentioned a study about HNA....what kind of study? Where? I would be interested to have Jordan (and possibly myself) involved in this study. Like you, many things make sense after doing the reading. Did I send you the info. I have on it? Keep me posted!!!

[rbwalton]

Hi Again Donna- Here is a link to the study.
http://research.seattlechildrens.org/ab ... ogress.asp

Three doctors in this study come up in many documents and past studies on HNA, so it is a good group. I get the impression that they want to get another study out there other than the famous and often quoted one done in the Nethelands that leaves imression that everyone with HNA must be of Dutch ancestry.

You did send me info long ago, but that was a different computer ago too, so it no longer exists for me (lost your email too).

I am conviced that HNA is the diagnosis for me. I need proof before my remaining family would believe me. Test is to determine damage to Sept9 gene of chromosome 17 which seems to be present in most HNA people.

Long Story short- Many odd stories that may support HNA in my family, but no one is thinking of HNA because no one knows about it but me, and no one believes me.

My email is changed, but available in my profile- if you want to email me direct for more info.

Richard

> Hi Richard!
>
> HNA is what Dr. Kozin's team at Shriner's came up
> with for Jordan. There are no real "tests" to
> confirm this, however, if you read all of the data
> and if things seem to "click" for you, your family,
> than it might just be it. You mentioned a study
> about HNA....what kind of study? Where? I would be
> interested to have Jordan (and possibly myself)
> involved in this study. Like you, many things make
> sense after doing the reading. Did I send you the
> info. I have on it? Keep me posted!!!


Message was edited by: rbwalton


Message was edited by: rbwalton

[neil sjoberg]

Hi Richard
I have had two sessions of brachial neuritis .I am sorry to hear of your distress.
The thing you do not mention is the extreme pain. That was the overiding feature of mine both times.
Relief came only from complete rest-often impossible for most of us.
In the dying days (both times 3-4 months) one Lyrica tablet gave immense relief and allowed me to slepp for the first time in weeks. When I awoke 20 hours later it was much better and a few days after went completely. The arm was wasted but steadily improved.

I suspect that had I recocognised the problem and rested it from the start it would not have been so extreme.
As you say most doctors dont know what it is and treatment of Physio and exercise makes it much worse.
On both occasion I had been in contact with people with flu or having had flu jabs for prevention of same.

I really hope you come out of it soon.
Neil

[rbwalton]

Hi Neil-
Yes the pain. . It definately redefined my pain scale since it was at least a 15 on a scale of 1-10. My pain did not last as long as yours- so I guess I am lucky there. But, I am now at nine years since the first attack, and three since the last. I was just getting better in 2006 when it happened again.

Richard

> Hi Richard
> I have had two sessions of brachial neuritis .I am
> sorry to hear of your distress.
> The thing you do not mention is the extreme pain.
> That was the overiding feature of mine both times.
> Relief came only from complete rest-often impossible
> e for most of us.
> In the dying days (both times 3-4 months) one Lyrica
> tablet gave immense relief and allowed me to slepp
> for the first time in weeks. When I awoke 20 hours
> later it was much better and a few days after went
> completely. The arm was wasted but steadily
> improved.
>
> I suspect that had I recocognised the problem and
> d rested it from the start it would not have been so
> extreme.
> As you say most doctors dont know what it is and
> treatment of Physio and exercise makes it much
> worse.
> On both occasion I had been in contact with people
> e with flu or having had flu jabs for prevention of
> same.
>
> I really hope you come out of it soon.
> Neil