quesiton for my forum family

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KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 11:38 AM (GMT -7)   
Hello:
 
I have posted on the lupus, Fibro, lyme and MS sites..because I'm lost.
 
I have had issues with my muscles and joints and all the weird things in between since 1998.
 
I was convinced that I had MS for years, and after seeing several neruorolgist I and being told that it was fibro, I accepted the dx.  My symptoms are:
 
Muscle pain (achey) pins and needles sometime , weakness (in L.leg at times), twitches (even my lips), tremors, shakey muscles (when walking).  One day my gums was hurting (it felt like my teeth-sharp pains) for about an 30 mins.
 
My insides trembled one night (weird)
 
Joint paint and popping (no swelling)
 
Tongue, eye, ear, nose, head and facial pain (aching and burning)
 
Dizziness: balance coordination and unsteadiness
 
Forgetful and short memory lost (and then I say oh yeah I remember)
 
Gerd- which was causing sleep apnea
 
Weak swallowing muscles (no choking) and soreness inside of throat/espohagus when I have flare... had barium swallow test and upper scope.. (basically normal).  ENT say spasms from refulx (??)
 
 
 
Recently: I noticed my hair thinning- I'm not sure whats going on..I'm not sure if its because I was trying to be a kitchen beautian:+0.. I permed it about a month ago.. was not coming out then (not that I noticed).  It does appear to be over processed looking..  but it most bald in the back of head (boo hoo).
 
TEST: MRI 3X, CAt scans (back too) , emg 1x, evoke poteintal (once),
Many blood test:  ANA 1:60, sed rate 7, dsDNA (?)-negative. General blood test were with in normal range.
 
Was in the hospital 2 weeks ago for 3 days, for dizziness etc..saw rheumy, neuro, ent and PCP.  No dx, everything was okay..except the ANA.. Rheumy doubts if its lupus (say I don't fit the criterias) , neuro say take Cymbalta. Was released with rx for mortrin and vicotin. 
 
My PCP took blood yesterday to test for lyme and b12 etc. and other stuff not sure what. Sceduled for EMG on the 18th..(starting all over).  over, and over and over....
 
I only feel bad when/right before it rains/snows or the humidity is high.  The summer is my best time and when I was pregnant.  I felt great. Working in the yard and jogging etc.  It like the sun re-energize me.  I have been going thru a flare now for almost a month!!! Was off work for 3 weeks, went back for 2 day and took off today before the holiday.  My eyes hurt so bad.  I had them tested before..(fine).  Its like I'm inflammed..but not showing on tests.
 
My spirits are getting really low..waiting and constantly going to doctors and ER only to be sent right back home.    I had one doctor look at me and said WOW when I explained everything (I got a new doctor!!).  I have flares before over 10 years..but it like this time is worst.  My mom looks at me like I'm crazy and says I neve heard of someone going thru what you are going thru.. you need to get back to work it may take your mind off things.
 
Nobody understands- nobody..except for members on this site!! 
 
Can anyone help me make sense of whats happeining to me?  I feel like members here sometimes give better insight than doctors.  I'm not depressed yet. but I'm worried and anxious...trying to fight becoming depressed.
 

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/26/2008 4:00 PM (GMT -7)   
Welcome to the forum.

Not saying you have Lyme disease, but all of your symptoms could point to that diagnosis. Have you been tested? Some say the tests are unreliable because an immune system can be weakened to the point where the antibody will not be present because the immune system isn't strong enough to respond. Often, folks may have to rely on a "clinical diagnosis". Most Lyme specialists make that diagnosis via symptoms and then send out for serology tests to confirm it.

Keep striving for answers and find a doctor who will work with you until you have that diagnosis. My understanding is that fibro is diagnosed via many trigger points throughout the body along with some brain fog -- similar to us Lyme folks.

Your PCP could order the Lyme test and a Lyme specialist could order tests for other co-infections. 10 years is too long to go on without knowing. Most people are relieved to find out what they've got -- and then you can start fighting it or at least getting treatment for the diagnosis -- chronic Lyme disease or something else.

I know other's will have opinions as well. Lyme patients are among the best posters!!!

I really hope you get to the bottom of it and that you get well as a result.

Hope for a cure

KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 5:40 PM (GMT -7)   
Thanks so much for your kind reply.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 11/26/2008 10:27 PM (GMT -7)   
Hi KE08,

Welcome to the forum, sorry you have been so ill. Symptoms for Lyme disease and the others you mentioned overlap so much. It is important for you to know that the blood tests for Lyme disease are not very accurate. Lyme disease should be a clinical diagnosis. It is important to see a Lyme literate medical doctor ( LLMD ) A Lyme knowledgable doctor will look at your medical history, possible exposure, symptoms, and test results to make a proper diagnosis. You should also be checked for all autoimmune diseases also. Please check out the newbees tred at the top of the page. Good luck in your search for answers. If you are interested in a doctors referal, I would suggest posting a new message titled "Looking for a LLMD"
Here is my story:

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 11/30/2008 12:44 AM (GMT -7)   
Hi KE08,

I agree with anoyed. Seeing a LLMD is a must!

I'm sorry you've been sick for so long without any help. We all know how horrible that can be.

You also mentioned being pregnant. Has you child had any symptoms? He/she may need to be tested also. Lyme is said to pass the placenta. I know this is scary. I have a 3 year old and we don't know if I had Lyme during my pregnancy or not. But he's not showing any behavioral or developemental problems. Thank you God! But I still keep going back and forth on testing him or not.

Let us know how things are going with you! Be encouraged that there's always hope! Many blessings to you and your family.
Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/30/2008 1:53 PM (GMT -7)   
KEO
Sounds like Lyme to me. It is crazy the hell that you have to go through and maddening the amount of Dr.s that one has to see, to PROVE that you are sick. I hear you!
Get your blood work done at IGNEX. Buy some books, Coping with Lyme Disease by Denise Lang. Or the Cure Unknown, by Pameal Wientruab, buy that one for your mother for x-mas.lol.
And anyone else in your family who does not understand how you feel. You will find out who your real friends are soon, the ones who call you scared out of their minds for you, they care and they took the time to read it. The ones who mis placed the book. Like my mother....well lets just say that I am mis placing her as well. bad grandma who does not make the time to read about her whole infected family.
I don't know where you live. But if you ask on the forum you can find Dr.s in your area who will not waste your time with all of the MRI's and crap.
Been there, done that.
And when all else fails try homeopathic methods that are not the norm like Envita.com. I was not happy with my LLMD's treatment. It made me really sick. And I did not choose to go that route. But you have options.
Good luck!
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/30/2008 2:20 PM (GMT -7)   
Thanks for your post- will do!!!
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