ANSWERS!!

[SOONERMOM]

This is for all you limbolanders....don't give up on finding out what is wrong with you!!  I finally had a test come back (very) positive and it was for Lyme.  My neurologist told me that "there is no Lyme in Oklahoma" and begrudgingly ordered my first test which I had run at my local lab.  When my results came back negative, I thought one more thing ruled out.

Recently when my husband started having a few of my same symptoms, I was encouraged by a few people that I met on this forum to spend the $195 for the same test through IgeneX lab in CA.  I honestly thought I was throwing away (more) money on my quest to find a diagnosis.

I don't think my GP was prepared to read my results and honestly I don't think he has done so before now.  I was unprepared because I had really been thinking MS and hadn't looked into much else.  He wants me to have a spinal tap done to rule out anything else because he thinks I could have 2 things going on--he didn't SAY MS, but he said autoimmune and then talked about the O-bands???  I hadn't seen him since October and I think I overwhelmed him with my numerous and CRAZY neurological symptoms.  He told me it was a little like CSI-haha.

He also added that my "diagnosis" (Familial Hemiplegic Migraine) from the last neuro was WAY down on his list of things he thought was wrong with me!!hehehe  A little---no a LOT of vindication for me!!

Anyway, please don't any of you give up on obtaining a diagnosis.  WHATEVER it may be.  I know each of  you has something wrong going on or you wouldn't be here on this fourm!  You have to keep believing in yourself.  I have seen over 6 different doctors and basically NONE of them got it right!!  

I am so grateful for all the advice and comfort I have received here!!!!

hugs to all,

Stacey

[Tabs]

Just a word of caution here Stacey:

I was diagnosed with Lyme based on an IgeneX antigen test in 2001 after nearly a year of constant neurological symptoms.  All other Lyme tests I had done, including both an ELISA and Western Blot at a very well respected university research hospital were negative prior to this.  I was put on extremely high dose antibiotics for almost a year.  I improved, but many of the symptoms I had in 2001 and some that are new have come back in full force recently, 7 years later.

I do not believe that Lyme is some sort of super bacteria unknown to modern medicine that could lie dormant and asymptomatic for that long after I was literally inundated for a year with 3 grams of antibiotic cocktail per day. I have a degree in the sciences and this strikes me as highly implausible based on what I know of bacterial biology.  I strongly suspect that I've had MS all along and that the onset of the remission phase after that first attack just happened to coincide with the antibiotic treatment.

If this is true (and I don't know for sure yet - I'm in the process of finding out) then it begs the question of how I tested hugely positive at IgeneX if I never had Lyme...  

I basically came to a realization and asked myself what's more likely, that this one lab is able to detect things that no one else in the medical community can, or that they've built a profitable business on telling sick people with strange neurological problems that they have the answer, which is invariably a positive Lyme test?  I find the latter far more likely in hindsight.

I just want to let people know what my experience was with this lab and the Lyme diagnosis when MS is also a potential explanation.  I fear this is going to be an unpopular view here, but it's definitely how I feel about it looking back - I think I was taken advantage of at a very scary time in my life and led to believe I had something I didn't.

Ryan

[Quixotic1]

I was quoting the ILADS site and Lyme research.  Uncommon does not mean that no one has it, just that sensory complaints are far more common.

Quix

[michael1028]

Good News !!!!! Good for you.
mike

[SOONERMOM]

The first test was the western blot, but it just said "negative"  where the IgeneX tests actually shows your reaction to each band and shows a range of + to ++++.  I honestly don't think my GP had seen that one before.  I wish I had read up on all this before my appointment.

I have found a doctor in Missouri that specializes in Lyme.  I had asked my doctor about going to an ID and got no response.  For some reason, I don't think he has completely ruled out MS and wants me to see Neuro #4 first.  Would you recommend getting the LP now?  I am definitely getting the next MRI in May.

Do you think that the spasticity could be from the brain lesions??  This is one of the symptoms my husband started having too.  

I will definitely let you know how things go.  Thanks for all of your advice!

Stacey

[Quixotic1]

Wow!  It's treatable!!!

The difference in the two tests is that the neuro probably ordered the standard ELISA test for Lyme, which is pretty useless.  Igenex runs a full Western blot and looks for O-Banding.  Also the running and interpretation of the Blot takes skill and lots of practice.

Regular labs do not have good quality control on the test often/

Lyme is characterized by a preponderance of sensory symptoms, pain, paresthesias, and joint complaints (which are unusual in MS).  True muscle weakness and spasticity are uncommon.  So there were some clues.  Did we recommend the Igenex testing?  If so, good for us, and good for you for doing it despite the grumpiness of your doc.

Now , you have to get treated, and stay with us.  I so hope this is the full explanation of your problems.

Is your doc going to send you to an ID specialist?

Quix

[SOONERMOM]

I started out w/pressure headaches and ringing of the ears.  I then had some migraines w/nose bleeds.  I got a numb on a small area of my face, then it spread to basically my whole left side and had symptoms all along my trigeminal nerve.  Burning, crawling, tingling, water dripping off my forehead feeling.  The tingling spread to my left side of spine and went down.    I started having more and more migraines.  I would have blood of some kind come out of my nose every day.  My left arm & leg would go numb periodically.  Then the muscle tone on mostly the left side started to be spastic and wouldn't relax.  One night it got really bad and I woke up numb all over (ALL OVER) on my left side.  I would have extreme numbness on left side of face and left arm and then lose feeling inside my throat.  Then it happened on the right side too and I lost central vision in right eye for about 3 seconds.  Sometimes, the numbness would turn to pain in my ears (stabbing) and my throat.  My feet would feel all twisted up and would vibrate.  My face would feel like flames were shooting out of it.  I guess the last thing was actually my joints were feeling "weird".  My ankles and hips would feel loose and then painful.  I would fall off of some of my shoes and started having some difficulty walking up stairs.  The more I walk, the worse I feel.  My muscles just hurt and so do my joints.  I am sure that I am leaving a few things out here--LOL

I had an MRI at almost the beginning and it showed 13 white matter lesions that did not enhance w/dye.  They are not in the "typical" place for either MS or migraine and are in the centrum semiovale in the deep white matter.  They are on both sides and fairly spread out.  I haven't had a spinal tap done, but my GP wants me to have one.  I actually had set up an appointment w/neuro #4  a while back and it is next week.  My GP said that if this neuro doesn't suggest a spinal, that I am to ASK for one.

I had a c-spine MRI and there were no lesions.  My VEP was normal.  I do have hearing loss (sensorineural).  I was tested for APS and every thing that the rheumatologist (sed. rate, ANA, etc.) could think of and it was all normal.  I just can't imagine how my first test came back negative, because the one I had through IgeneX showed 10 positive bands for antibodies to Borrelia burgdorferi. (Lyme disease  bacteria).  You wouldn't think that there would be such a difference???

best wishes to all,
Stacey