LymeNet Flash: An HONEST NEUROLOGIST finally!

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»	LymeNet Flash » Questions and Discussion » Medical Questions » An HONEST NEUROLOGIST finally!

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Topic: An HONEST NEUROLOGIST finally!

LostCityAgent
Unregistered

posted

A neurologist is honest about MS and LD in his letter answering a concerned patients question:

Nancy,
The diagnosis of multiple sclerosis is often

challenging, insofar as while many different

tests may be supportive of it, the diagnosis is

most often made by clinical history and physical

examination evidence of multiple attacks of

brain or spinal cord malfunction causing

neurologic symptoms (such as numbness,

weakness/paralysis, double vision, facial

paralysis, difficulty walking and speaking etc.)

separated in both space (in other words,

different areas of the brain or spinal cord

being involved in each attack), and time (in

other words, symptoms should go away completely

or almost completely, or at least significantly

improve, between attacks, rather than progress

all at once). On MRI scans, M.S. most often

produces evidence of so-called "spots" on the

brain or spinal cord, indicative of areas where

the MYELIN, or insulation coating of nerve

fibers, has been damaged or destroyed by

inflammation, hence M.S. being called a

DEmyelinating disease. Unfortunately, other

diseases can cause such demyelination as well,

and until the clinical features of M.S. occur

(often over months to years), one can never be

completely certain that it is M.S., although it

is by far the most frequent cause of

demyelinating disease in the barin and spinal

cord. Diseases that sometimes imitate M.S.

include sarcoidosis, cerebral vasculitis,

arteriovenous malformations, Lyme disease,

lupus, and some other rare diseases. Lyme

disease specifically is caused by a bacteria

called Borriella burgdorfera, and is transmitted

to humans by the bite of a certain tick (Ixodes

damnii). Often but not always, a RING-shaped

area of redness appears at the bite location,

and spreads, and other ring shaped areas may

form elsewhere. The second stage of the disease

occurs only in some people (and may be the first

stage in those that never get the rash), and

consists of brain and sometimes heart symptoms.

Brain symptoms most often consist of meningitis-

like symptoms (stiff neck, headache, light

sensitivity) and/or so-called cranial nerve

palsies, where nerves that come out from the

brain on their way to the face, eyes, throat and

other parts of the head, get inflammed.

Sometimes stroke-like symptoms occur, however,

if deeper parts of the brain are affected.

Typically if unrecognized and untreated, this

phase of the illness will "burn out" over months

to a year or so, and then the third stage may

set in, which is a persistent ARTHRITIS that can

affect many joints. Blood tests and spinal fluid

tests are available to diagnose the disease, but

there is NO 100% accurate test for Lyme disease

(or M.S.). Spinal fluid analysis often reveals

certain abnormal proteins that support a

diagnosis of M.S. There is also another test

called a visual evoked potential sometimes used

to support a diagnosis of M.S., as it often

affects thge optic nerves, which are responsible

for vision (causing optic neuritis, where

temporary blindness or dim vision occurs in one

eye).

Because a diagnosis of M.S. has long term

implications (and often insurance coverage and

employment implications), physicians are highly

reluctant to diagnose it until they are CERTAIN that OTHER causes of demyelinating disease and

M.S. imitators have been excluded. Once the

diagnosis is made or strongly suspected,

however, there are some new treatments for it

that actually do favorably alter the long term

course of the disease, although they do not cure

it (much like antiinflammatory drugs like

ibuprofen help arthritis a great deal, but do

not cure it). Treatments are also available for

individual flareups of the disease.

I hope this information answers some of your

questions and helps you to better understand

your daughter's situation. Information provided

on the neurology forum is intended for general

medical informational purposes only. The actual

diagnosis of and treatment of any particular

condition you (your daughter in this case) may

have should be strictly in conjunction with the

patient's treating physician(s(. The Cleveland

Clinic is the home of the Mellen Center, the

world's largest institute devoted entirely to

the diagnosis and treatment of multiple

sclerosis and related disorders. If your

daughter would be interested in obtaining

asecond opinion there, the number is 1-800-223-

2273--- ask to be connected to MELLEN CENTER

appointments (separate from general neurology

appointments). I would suggest Dr. Richard

Rudick, Rip Kinkle, Jeff Cohen, or Richard

Ransahoff in particular. Good Luck!!

IP: Logged |

lou
Frequent Contributor (5K+ posts)
Member # 81

posted

A big dose of honesty. How refreshing. And I like your little statement at the end.

But not sure a second opinion from the Cleveland Clinic will be useful. They would very likely deny any connection to lyme.

Posts: 8430 | From Not available | Registered: Oct 2000 | IP: Logged |

seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

posted

They almost got it right.

Do strongly disagree with the statement regarding neurological Lyme -- "Typically if unrecognized and untreated, this phase of the illnes will "burn out" over months to a year or so, and then the third stage may set in, which is persistent ARTHRITIS that can affect many joints."

Not saying it doesn't eventually progress to arthritis -- just don't agree that brain symptoms are going to go away in a year all on their own. I don't think so!!!!!!!!!!

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004 | IP: Logged |

LostCityAgent
Unregistered

posted

Lou and Bea,

I totally agree with both of your assessments. But check this bu** Sh*t out, read this article:

http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html

Enough to make me sick.

IP: Logged |

lou
Frequent Contributor (5K+ posts)
Member # 81

posted

Bea read it more carefully than I did. I defer to her assessment.

Sorry, I would have a stroke if I read anything on quackwatch.

Posts: 8430 | From Not available | Registered: Oct 2000 | IP: Logged |

NP40
Frequent Contributor (1K+ posts)
Member # 6711

posted

McSweegan spews his nonsense page after page, then throws in the following disclaimer at the end.
"Lyme disease, when diagnosed early, is readily treatable with oral antibiotics."

These three words in bold completely refute all his previous blatherings on lyme disease.

Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005 | IP: Logged |

Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020

posted

Nancy, please do not go by anything you read on "Quack watch"

The guy who puts that together is very strange. He lives in PA, is not a licensed doctor, though he has claimed to be one,and even testified as an "expert" in courts of law and he has brought law suits in 40 states and lost every one.

If you do a "search" here on quack, I think you will find some very verifiable info about him.
(go to http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=038356
or http://tinyurl.com/zdkul )

We should be very careful what we take as gospel on the internet.

Your neurologist really proved he doesn't know much about Lyme disease with his
"Typically if unrecognized and untreated, this phase of the illness will "burn out" over months to a year or so, and then the third stage may set in, which is a persistent ARTHRITIS that can affect many joints."
statement. The idea of phases of Lyme disease is really not used any more, as so many people are hit with so many symptoms all at once.

There are so many of us who have had persistent neurologic problems with Lyme disease and for whom only long term antibiotics that cross the blood/brain barrier have been effective.

Now for the Cleveland Clinic - I (and lots of other patients with Lyme disease) have had very poor experiences with the Cleveland Clinic. They
don't believe people in Ohio can have Lyme disease. They will give you an ELISA test and if that comes back negative, will say you don't have Lyme disease. Or they will test you for everything they can think up, then tell you it is all in your head.

The Cleveland Clinic Journal published an article by a rheumatologist who said most people who think they have Lyme disease have "Pseudo-Lyme disease". They had him out for lectures and dinner, and that is where their mind-set is.

They probably have a good reputation on MS, but I bet if they even consider it might be Lyme causing it, they will quickly dismiss that idea.

I so wish you good luck. Maybe if you go to the "seeking a doctor" section, someone will be able to give you info on a doctor who is experienced in treating Lyme disease in your area.

Ann - OH

--------------------
www.ldbullseye.com

Posts: 5705 | From Ohio | Registered: Jan 2002 | IP: Logged |

LostCityAgent
Unregistered

posted

Ohhh Ann,
My name is not Nancy. This was an exerpt from a neuro forum. I did not say that everything in the statement was perfect. He, however, admits to some degree on the reality of a neurologic sequence.
And, I have multiple brain/spine lesions consistent with MS and only 1 band lit up, thus not even CDC positive. I have some people saying I will get better, others say it is MS, others say there is no way to know. AHHHHHHHHHHHH

For Heaven's sake, I am only 27 years old.

John.

[Moderator comment: I got rid of most of the "H"'s in "AHHHHHH" to shorten the width of this post to help in the ease of reading]

[ 26. May 2006, 10:16 PM: Message edited by: Jenifer ]

IP: Logged |

lou
Frequent Contributor (5K+ posts)
Member # 81

posted

Sorry John. I know you are worried about your situation.

Yes, it is uncommon that a doctor will admit to not knowing everything, and bullying the patient in the process. So, although this one made a number of lyme errors, it does look like the ego here is not as enormous as some. That is a starting point of a person who could possibly learn something new.If he were not frightened by controversy.

Posts: 8430 | From Not available | Registered: Oct 2000 | IP: Logged |

just don
Frequent Contributor (1K+ posts)
Member # 1129

posted

Stupid question here but WHAT is with this thread that makes it super wide I have to scroll back and forth to read it??? I always wondered why most are normmal width and then some are super wide?? Can I correct this with settings on my puter?? Or doomed to scroll which is miserable and SLOW???

--------------------
just don

Posts: 4548 | From Middle of midwest | Registered: May 2001 | IP: Logged |

Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020

posted

First for Don. I agree this wide load is a hard read. One quick remedy is to click on the printer version on your left below. That will show you a manageable version. I hope whatever makes it this way will get fixed soon.

John, I am so sorry. I had no idea that the letter the neurologist wrote was not to you! I still stand by the rest of what I wrote.

Quackwatch is a fraud and kind of vicious to boot. He has old stuff written there by a person who was relieved of his job dealing with Lyme at the NIH.

I am not sure where you are, or if you have been diagnosed with Lyme as well as MS,but I hope you can find some good help near you.

I am in Ohio and know of a neurologist in W. PA who has experience with Lyme patients. Will be glad to give you that info.

You can go to my website and e-mail me by clicking on the mailbox there.

Ann - OH

--------------------
www.ldbullseye.com

Posts: 5705 | From Ohio | Registered: Jan 2002 | IP: Logged |

dmc
Frequent Contributor (1K+ posts)
Member # 5102

posted

Am I missing something??? I didn't take the neuro letter as being anything but the usual hooey.

Posts: 2675 | From ct, usa | Registered: Jan 2004 | IP: Logged |

bettyg
Unregistered

posted

lostcity,

Please EDIT/pencil your post and change whatever you did causing your post to go SUPER WIDE, which majority of us can not read nor toggle back and forth to comprehend. thank you.

If you can not fix yourself, please email the MODERATOR shown at the top of medical screen....thanks.

IP: Logged |

Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338

posted

It was that very long AHHHHHHHHH..... that he posted.

Posts: 6947 | From Lancaster, PA | Registered: Feb 2004 | IP: Logged |

bettyg
Unregistered

posted

fyi, Jenifer just emailed me that she fixed this super-wide thread I sent her an email about. YEA!
Bettyg

IP: Logged |

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