Ever wonder if you were wrongly diagnosed with MS?

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TerriHope
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Date Joined Jul 2006
Total Posts : 6
   Posted 7/11/2007 2:40 PM (GMT -7)   
HI
 
I might still be in denial , even after 14 months, but sometimes I wonder if they diagnosed me correctly. Yes, I have the symptoms, but as we all know, there are so many *other* things it could be.
Is there any other disease that causes Demylination <sp> ?

Yuris
Regular Member


Date Joined Jul 2007
Total Posts : 43
   Posted 7/11/2007 5:09 PM (GMT -7)   
Hello Terri!

I'm in Mexico City: three months ago i was wrongly diagnosed (by a neurologist) with MS... After that, a friend of mine (who has a causin that inmporved a lot with another doctor) took me to this neuroinmunologist and he was esceptical about the MS diagnose... he told me it could be Lyme disease... Sent me to blood tests, and yes, i did possitive in Borrelia (the bacteria causing Lyme).

So, that coul be another possibility of demylination... And encephalomyelitis too... Go to your lab find out what's in your blood. Besides, the doctor show me the results (blood test too) of the "Cardiolipinas" (that's the name in spanish, don't know the term in english) but if you have an autoinmune disease like MS is, then you do possitive on that test, but if you have a virus or bacteria, you'll be negative....

Diagnosis is the most difficult thing regarding MS: there are lots of doctors that explain all brain injuries just by saying it's MS...But they don't do deeper research.... Go for another (second, third) opinion to figure it out...

Good luck!!

Yuris.-

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 7/12/2007 5:16 AM (GMT -7)   

Hi Terri,

I too asked the same question: but for me I had MS for 20 years! I started Copaxone because my neuro didn't want to see me grow old and end up in a wheelchair!

yikes!

that scared me enough to begin searching and reading about the similarities between MS and Lyme disease.

After many months, I finally found a doctor who specializes in tick-borne illnesses, got a test done by a lab that tests for ALL the bands, and along with a clinical diagnosis.....found out I have lyme disease.

I'm in treatment for 9 months and am feeling GREAT!. My lesions have lightened,,,,and some are no longer noticeable! I have no new enhancing lesions either...

I try not to say "misdiagnosed",,,I always felt my neuro had my best interest in hand. These good docs need to be educated on testing for lyme disease. The ELISA test is completely unreliable!  The sickest of us get a "negative" test result. Testing must be done at a lab like IgeneX in CA; and then doctors must clinically diagnosis us...just like MS!

for example, heat is something that bothers me, but I found out that the borrelia bacteria is the reason why,,,this bug LOVES the cold! this is only one of the many symptoms that go along with lyme disease, light sensitivity, tingles, numbness, vertigo, double vision, trigeminal neuralgia, L'Hermittes, brain fog, are just a few symptoms of Lyme disease.

So, with your very good question, join us on the lyme board ask some questions, and you too just might find yourself on the road to recovery! :-)

the best,

tory

 


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/12/2007 7:19 AM (GMT -7)   

tory--

wow i am at the same place in a way right now-- i was diagnosed with ms last year -- they think i  may have had it for 10 years though, the copaxone made me worse so i have stopped that and am decided what therapy to do next-- thinking about tysabri- but then i remember my doc thinking in the begining maybe it was lyme but they never tested me--

my family and i had a big discussion and they asked that i make sure to get tested for lyme and also b12 deficiency before going on any other of the tough ms meds.. i have always beena very big outdoors girl (till now =( ) even hiked 110 miles of the pct trail out west when i was 22...

those little bugs could have gotten to me for sure-- but anyway i am curious about lyme -- how is it treated and is it curable-- i need answers-- i want to make sure i cover all bases and make an educated decision -- i would love to hear from you

hugs, peace and hope
Zoe Butterfly
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 7/12/2007 7:36 AM (GMT -7)   
Dear Zoe Butterfly3,

I too agree with your family, get tested for lyme disease. My doc says that lyme is a pandemic! and so many of us are not diagnosed!

Please join us on the Lyme board, and we can help you find the right doctor and get ALL the right tests, CD57, Immune Complexes, etc.

I will be happy to stay in touch, and help you get some answers!

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 7/12/2007 7:39 AM (GMT -7)   
oh yes,

My doctor treats lots and lots of MS patients; he doesn't have an issue with any of us remaining on any of the "disease modifying drugs", but he states that Tysabri "scares" him; he won't recommend it!

Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/12/2007 9:32 AM (GMT -7)   
so that means it is an autoimmune too and not curable?  i thought maybe it was not chronic once they knew --- is it irreversible?  tysabri is actually my first choice if i go back on meds- i have heard amazing things from people on it and my doc has done research mostly for my case cause i can't take the interferone (high suicide rate in family along with attempts myself when i was younger) 
 
either way i will deal with it-- no one will straight say if lime is curable or not and i want to know-- i never had a spinal tap for ms cause i had so many lesions each time they were confident they had it down to the right diagnosis-- i figure better safe than sorry-- do you still use an auto immune drug
 
thank you for the info
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 7/12/2007 10:21 AM (GMT -7)   

Zoe,

hmm, where to start. First of all Lyme disease is not an auto immune disease. Quite the opposite. Research tells us that our bodies are NOT invading ourselves; it's a bacteria that is inside our cells, and there are lots of other co-infections that go along with Burgdorferi Borrellia.

Is Lyme disease curable? yes, is it difficult to eradicate? yes, but it is possible.

the best news is that people that are suffering are known to "stop" progression in their tracks! Getting this insidious bacteria out of our cells is why we heal and get better.

There's lots to learn and read about Lyme disease, but the first step is to rule it out. And unfortunately, testing is poor!

Here's an article about Lyme Disease: it talks about why testing is unreliable, why so many of us are misdiagnosed, along with additional links.

I hope Zoe, you consider testing for Lyme along with making a decision of any of the disease modifying drugs.

http://www.newhaven.edu/unh/lyme/News.html

the best,

tory

 

(mod note- I've replaced the full article you posted with a link instead.  Please read the forum rules primarily 8 and 9.  Any questions, please contact me.  Thanks!)

Post Edited By Moderator (Kimber) : 7/12/2007 3:56:59 PM (GMT-6)


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/12/2007 1:19 PM (GMT -7)   
well tory it is no doubt it is worth trying out and getting tested i will findout the correct tests and such and hope for the best-- no sure what that is (LOL) but wither way want to really research everything before making decisions

Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 7/13/2007 4:39 AM (GMT -7)   
to the Moderators,

Geez, I had the rules reversed! Thought I couldn't post the link! Wrong forum....

my apologies

thanks for helping out and getting me straight!

tory

Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/13/2007 9:27 AM (GMT -7)   

tori

i talked with my neuro this morning and he agrees it is something we should look into -- so i will be seeing him next week i believe and i will advocate for the correct testing-- i received your email and i will be using the resources -- thank you

zoe
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 7/13/2007 3:33 PM (GMT -7)   

Hi Terri

welcome to the board.

I am one of those who was misdiagnosed in 1999.  I have lyme and probabally did then too (looking back at test results) although 6+(I've lost count) prominent neuros insisted it was not lyme. 

Untreated lyme has caused my condition to worsen and my lyme Dr says because it went untreated so long it may have caused MS or a MS like illness.  She does not know if the neuro damage is reversible.

Long story short I highly recommend you research and check out all options. BTW lyme gets into the CNS and causes demylenation. Lessions in the brain as shown on MRIs could be lyme as well as MS. 

Good luck to you in your search for answers.

 


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/13/2007 7:10 PM (GMT -7)   

wow-- so lyme can cause ms?  is this proven or researched?  so you can have both-- tough stuff-- i am gonna be really looking into this hard now--the doctors think i have had ms for 10 years so that means i could have lyme for that long-- which ever it is or both but i am gonna beat it-  i will get answers and stay positive in my search for the truth

thank you

zoe


Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 7/13/2007 8:10 PM (GMT -7)   

zoe

I don't think it is proven.  There is a lyme Dr, Dr P in Ct who has done some research and written some papers about the connection between the two diseases. He is a smart guy who graduated from Harvard or Yale medical school (can't remember which right now).

There was a study done about spiroketes (lyme bacteria) being found in the brains of MS and ALS patients. It was a high percentage of patients who had this finding so I don't think it was a coincidence. I will look for that study if you want. 

Getting treatment for lyme as soon as you know you have it is critical.  I think I have had lyme since I was a kid and I am 46 now. When my immune system was surpressed this began to wrek havoc. I was able to probably keep it check for many years because I lead a very healthy lifestyle.


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/14/2007 5:57 AM (GMT -7)   

I would be very interested in reading up on that study done--  i still do not know how they test for lyme and what it takes to find out-- i know routine blood test is innaccurate so i have been told-- i wantto be asking for the right tests--

i hope you are not in too much discomefort and can continute to heal-- are you being treated still--


Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 7/14/2007 8:35 AM (GMT -7)   
terri--
my neuro tested me for lyme, gluten sensitivity and who knows what all. he was very careful to check for any and all diseases my symptoms might be diagnosed. good idea that you brought up the lyme disease. usually takes a while for results, so glad you're taking care of this mystery. linda

KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 7/14/2007 11:16 AM (GMT -7)   

Zoe

there is a high percentage of false negatives, and even higher with the standard labs (quest, labcorp).  Testing neg doesn't mean you do not have lyme. 

If you have any questions about the testing e-mail me. 


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 7/14/2007 11:29 AM (GMT -7)   
i just want to know what tests i should ask for and what labs to have them sent to..
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 7/16/2007 5:09 AM (GMT -7)   
Zoe,

Sounds like you will ask your current doctor to order the tests? If so, it's not an easy task to list all the bloodwork that lyme doctors order.

The most important test is the Western Blot, and this needs to be done at labs that specialize in Tick Borne Diseases; if you get an ELISA you will more than likely test negative. This is where the confusion comes in, so many of us are tested for lyme (ELISA) and test negative. The CDC states that relying on test results to diagnosis lyme is not enough.

You might consider finding a doctor a (LLMD) and get the entire round of tests and then decide which course of treatment is for you.

As for research on the similarities of Lyme and MS, here's a lecture that was done in 2006 at the University of New Haven called:
"Chronic Lyme Disease:Connection to MS-Facts behind the Controversy"
http://www.newhaven.edu/unh/lyme/
This DVD offers the research you are looking for. It's a DVD I intend to take to my neurologist.

It's a difficult yet simple hill to climb, I know first hand...I still find it amazing that I sat in front of both types of doctors, and clinically I fit into both diseases...

It was this very reason that I decided to become my own advocate, began to educate myself on lyme disease, opted to find a lyme doctor, and eventually allowed my body to tell me IF I harbor this bacteria and the parasites that go with it.

I wish all good health,
tory
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