Topic: anyone know anything about parsonage turner syndrome
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My cousin was diagnosed with this, which is a rare syndrome with similarities to LD. He was diagnosed at none other than "Mayo". He told them about me, with LD and they said they bet 99% that I didn't have lyme but might have parsonage turner because it is a genetic syndrome and we are first cousins. I also have another cousin with similar symptoms.
Anyway, I think my cousin probably actually has LD, because he owns wooded land with horses and deer. But since he went to Mayo, and he seemed very impressed with his treatment there, he thinks instead that I possibly have PTS.
Of course I have both band 41 and 23 IGM through labcorp, which pretty much convinces me that it is lyme for sure.
Just wondered if anyone knows anything about this "syndrome" and has any opinions about it. There is no cure, but it usually disappears on its own between 1 and 5 years after it begins. Has anyone been diagnosed with this?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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quote:Originally posted by Tincup: And look how they UN-diagnosed YOU and you weren't even there!!!!
LOL. (I wonder if they will send a bill for that diagnosis.)
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Looks like another case of diagnosing a symptom or a result of lyme as the "final diagnosis", like fibromyalgia or CFS.
The lyme is causing pain, decreased movement, etc and the Dr's....as usual...are only focusing on that symptom/body part.
They are not looking for the cause of the symptom.
Notice that it says "no known cause" in that link Lymetoo provided.
In another article I read it said caused by "nerve damage".
Lyme causes nerve damage.
Lyme also causes many symptoms that ultimately cause patients to get slapped with diagnoses that have "no known cause".
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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massman
Unregistered
posted
Mayo is showing it is protecting its own reputation ! THAT must be what is most important to them.
And the annoying genetic babble. "You got the gene ! You got the gene !
Ask the Mayo clones "why does the gene EXPRESS itself ?
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Thanks guys. I am very frustrated right now. He is definetly caught in the claws of Mayo and actually thinks I don't have Lyme now......since they undiagnosed me. HA!
I still think he has to at least be thinking about some of the stuff I told him, which wasn't much, since he was so satisfiedd with his "disappear on its own" diagnosis. I am going to see him again next month right after New Years, I will be more prepared then.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I am still waiting for the Mayo's "disappear on its own" diagnosis to happen 19 years later.
I have Lyme and have shoulder/arm/neck issues similar to what was in that article. I'm not sure if my pain is from Lyme, Babesia or spinal problems in neck...
Posts: 25 | From northeast | Registered: Feb 2001
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