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?
Posted by Lymetoo (Member # 743) on :
I'll have to go check it out!
Mayo likes the "disappears on its own" thing. That way they don't have to do anything!
editing to add... Sounds rather limited though. Only involves the shoulder and arms???
If you can get him out of their claws and to a decent doctor for decent tests and a look-see... my bet is, like you are thinking... he has Lyme.
And Tutu is right. Hold the Mayo does like the "disappear on its own" jibber jabber.
I feel so sorry for him!!!
And look how they UN-diagnosed YOU and you weren't even there!!!!
What toads! UGGGGGGGGG!!!!!!
Do what you can but don't expect it to be easy to break the Hold the Mayo spell they have on him.
Posted by Gahagan (Member # 21194) on :
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.)
Posted by Dekrator48 (Member # 18239) on :
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".
Posted by massman (Member # 18116) on :
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 ? Posted by sutherngrl (Member # 16270) on :
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.
Posted by Glassgal (Member # 668) on :
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...
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Mayo clones "why does the gene EXPRESS itself ? ![[confused]](graemlins/confused.gif)