LymeNet Flash: Nuero says.......

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Nuero says.......

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Author

Topic: Nuero says.......

lymesc?
Member
Member # 19564

posted

Well i went to my nuero appt today.

I was really scared that they was going to say that what I had was MS.

Nope , the DR actually said that my symptoms did seem to be lyme related .

He also said that all the joint popping that i had during my exam was not a symptom of MS .

He said he was almost certain that it was lyme , but since my test only showed 41 band that it was neg. so then he said that it wasnt lyme .

Here is the kicker ... he said that i must have some kind of bacterial infection that was affecting my joints .

But it more than likely wasnt lyme .

But he wants to do an MRI to see if there are any lyme or ms lessions on my brain.

WHAT?????????

Talk about beating around the bush . He was talking his self in circles !

My question now is should i go ahead and get a IGENX test done now that i have taken 2 months of antibiotics .

Then get a llmd appt.

I just feel better that he did rule out MS .

Posts: 36 | From south carolina | Registered: Mar 2009 | IP: Logged |

hurtingramma
LymeNet Contributor
Member # 7770

posted

Yes to both your questons. I had test after test for MS before I finally clamored enough and they sent me to a rheumy - who diagnosed me with FM. Finally, a few years later I found a LLMD and was immediately diagnosed with Lyme.

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

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Posts: 938 | From Northeast Kingdom Vermont | Registered: Aug 2005 | IP: Logged |

Wonko
LymeNet Contributor
Member # 18318

posted

I'd get to an LLMD.

Even if your MRI does show lesions, it is not always easy to tell if they are from MS or from Lyme.

I have non-specific lesions, and since my ELISA was negative, my doctors didn't think it was Lyme. But they were not all typical MS lesions, either. So the test didn't help, I was still undiagnosed.

When I had my Igenex WB, I only had IgG 39+ and 41+++, and IgM 41+. I also had 2 negative ELISAs. So I'm CDC negative. But I've had an obvious response to abx.

Lots of times you need to wait awhile to get in for an initial appt. So that's all the more reason to start searching for an LLMD and get an appt. set up soon.

You can always work in "parallel," finish getting a proper MS work-up while starting to see the LLMD.

Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

-

The MRI can wait.

I would see the LLMD first. S/he can order the MRI which will be read by LL radiologists.

However, if there is a way to have the LLMD with whom you schedule to order an MRI with a particular radiologist - before your consult - then you'd have it by your first appointment.

But, if it's read by just a typical radiologist, it will not be the best diagnostic measure.

-

Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

Tincup
Honored Contributor (10K+ posts)
Member # 5829

posted

I'm with Keeb on this.

Hold off on the expense of an MRI. If a LLMD orders it, consider it.. but this duck is fishing and you don't need to waste YOUR money while he is playing games.

OR your insurance companies money.

Remember...

A negative test result (MRI or whatever) can give your insurance company more ammo to use against you.

And given the opportunity, they will use it against you.

[Big Grin]

PS. The duck thinks you have ABLS.

Anything But Lyme Syndrome.

What I want to know is...

HOW DO THEY GET SO STUPID?

[lol]

--------------------
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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004 | IP: Logged |

lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130

posted

Right on Cup!!

I had an ID duck tell me "you don't have lyme disease, but I'm going to OK" -get this- "lyme arthritis, antibiotics"!

That one, has GOT to, take the CAKE!

Quit fooling around with this dumbo neuro or Rome will be burning by the time he gets you a REAL DIAGNOSIS!

zman

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I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004 | IP: Logged |

'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189

posted

The neuro was "almost certain" it was Lyme, then saw some standard Western Blot results, w/ just the 41 + (indeed considered "negative"), and then said, "It isn't Lyme." ?

Sounds like another duck relying on the accurracy of these immune response tests. ANY pathologist, LLMD or Lyme researcher knows all too well the problems w/ the current tests.
I just wish more PCPs would "get it".

Posts: 1233 | From Dover, NH | Registered: Sep 2008 | IP: Logged |

randibear
Honored Contributor (10K+ posts)
Member # 11290

posted

what!!!! now i'm confused....first you say you will and then you won't, then you say you do and then you don't....

get another doc...

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do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007 | IP: Logged |

lymesc?
Member
Member # 19564

posted

I did follow his advise and i got the mri done today.

Posts: 36 | From south carolina | Registered: Mar 2009 | IP: Logged |

tpap1006
Member
Member # 19634

posted

lymesc,
as we discussed via pms, the joint popping- I have that same thing!!
Trace

Posts: 65 | From massachussettes | Registered: Mar 2009 | IP: Logged |

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