Is this significant?

[LATW]

I just got my SER, VER, and BAER results. I have optic neuritis and my VER was abnormal. I had an MRI of my brain and it showed demylentaion in the white matter. HOWEVER, they were not in the "right spot" or "right shape" for the neurologist to say it is MS.

However, the radiologist says "demylination". Neurologist says the spots, one old and one new, are from high bp since they are not in the "right spot" for MS. I have been treated for high bp for 20 years and it has always been controlled.

I know I am repeating myself here but, My ON started with major fatigue and I felt so disconnected. Some tingling and odd sensations in my right leg. My leg was not numb but felt oddly disconnected. I am having what seems to be foot drop. I can not raise my right foot upwards while standing on it. I have some minor balances problems and I tend to catch my toes and upper part of my foot on the ground.

Then there is the numbness in my hands. I have been following the posts about carpal tunnel. I was dx's with ct 6 years ago. But they did say it was odd that my two last fingers were the ones that go numb. I guess it is generally the first two fingers and the thumb? Anyway, I had an EMG on my left arm and leg 6 years ago that gave me that dx.

Oh yes, then there is the trigeminal neuralga that hit about 4  years ago.  Well, I will go back to see this neurologist to see what she says, but I do have an appointment with an MS specialist.

I did have a c-spine MRI. The radiologist report said it was clear. The doctor didn't even look at the films. I am just really confused how she can look at the films of my brain MRI and say the radiologist was wrong but yet take his word for it on my c-spine with out even looking at the films!! Seems very inconsistant to me.

L

[tory2457]

no problem,,like I said it's a lot to swallow!
Yes, IgeneX Labs is a lab that specializes in testing for Tick-Borne Diseases...they test for all the bands; unlike the ELISA!

yup, he's common in the fact that he didn't light up like a Christmas Tree...nor did I!

There's a gal who has a MS diagnosis, was on a DMD for over a year,,,and did get her IgeneX test. She too tested negative.
She too is confused.
Today, with her permission of course posted her results. So far one response but from a gal that is very knowledgeable...more to come I hope.
take a look!

tory

[LATW]

Oh, I saw a program on TLC. I think it was Medical Mysteries. This guy went on for about 18 months getting sicker by the week and they could not figure out what was wrong with him. He had all of the usual tests done. He even had the typical lyme testing, which came back negitive.

Somehow finally he got in contact with IgeneX lab and was tested for Lyme. I don't think he showed a strong postive lyme but they treated him for Lyme and he did get better.

I am not discounting this....I am just trying to work this all out in my brain. I have to mull things over for a while before I am ready to take action....just the way I am.


L

[LATW]

Does it cost a lot to get the testing done? Do you need a doctor to order it?

L

[tory2457]

I too have similar symptoms...but getting better! TN is sooooo painful!

I took the plunge after 1 full year of research and a relative who was diagnosed with MS, I mentioned he should look into the connection between MS/Lyme..

I NEVER considered that I could have Lyme Disease, I have a world renowned MS doc,,,,,but surely thought my relative did..Heck, he's a healthy Marine, how could it be MS?

so, he eventually found a doc after 2 yrs on Avonex, of course tested negative using IgeneX Labs ..very common; yet had "specific" lyme bands that were positive!

I then, found a doctor who is educated in lyme disease, tested through IgeneX, also tested negative with positive lyme bands...and now treat my MS (and he does too) with antibiotics..Lots of us MS'er are doing the same!

Is all MS Lyme? I can't answer that...I do know that so many of us who finally take the Plunge become part of the lyme community and begin to feel better!
In order to be CDC positive the criteria states 5 bands must be positive on the IgG and 2 bands positive on the IgM...this is almost an impossiblity because our immune systems can't recognize the bacteria,,,which means our bodies don't make antibodies! So much to know!

I don't ever want to sound forceful or pushy about this: I know first hand how difficult it is for anyone to consider being tested..."correctly".

ilads.org is a wealth of information from doctors who believe that Lyme Disease is a persistant infection!

I post here only to offer what I know and wish all with this devastating disease a "glimmer" of hope--if interested!

so, I offer you the lyme website to ask a bunch of sufferers what their opinion is regarding your "symptoms" and of course your negative test results. And then the tick bites.  :)

friends,
tory

[LATW]

Hi Tory,
I didn't know you have MS. How do you treat it as an infectious cause? Is treatment different?
All I know is something is not right. Who knows what it is. I have finally gotten to the point of just accepting that I am nuts.
But now I have ON, probable trigeminal neralgia, and two spots of some sort in the white matter of my brain. At least there is now something showing up the doctors can get their minds around.

L

[tory2457]

honestly, I can understand that this is overwhelming! Please don't let it get you! You need your strength!

Can I just simply say that Lyme Disease is a clinincal diagnosis! and with having numerous bites? YIKES! that is signficant

The easiest thing for you to do imo,,,,it will help with all the info out there: is to post on lymenet.org under Medical Questions,,give a brief description of your symptoms and then the tick bites!

Wait and get opinions.......!

Whew,,,,hang in there okay? btw, do you know that I too have MS? but treat it as an infectious cause?
tory

[LATW]

I am not sure what to think about the Lyme issue. I am very familiar with ticks. Have been bitten more than once. We used to live out on a farm and I spent a lot of time outside and in the woods. We were always pulling ticks off of our bodies it seemed. However, that was more than 30 years ago. I now live in town and spend most of my time in the house. I can not come up with any situation where I might have come in contact with a tick. Not even a mosquito. They must not like me because they don't bite me. I seem to repel them!

I have looked over the lyme symptoms and I am not sure if I really fit. Then there is my family history that would point me more towards the MS side of things.  It is confusing. I have had 3 tests for Lyme now. The one I had done when I was in my 20's was actually sent out of state somewhere. I am not sure if it was the more accurate one or not. I did have a rash then. That is when they tested me for Lupus also. But again, that has been well over 20 years ago.

I have been keeping the lyme issue in the back of my mind. But I feel overwhelmed right now and can only seem to deal with one thing at a time. I am just not sure what to think yet. I will check out the information you have given me though. Thank you!

L

[tory2457]

Just read your response,,what I find so sad is the unresponsive or concern your doctors have! You're a busy gal with 7 children,,,good for you!

About spinals, My Neuro never ordered one for me...thankfully. Some neuros don't find them helpful to make a diagnosis of MS, they prefer MRI's.
but MS is a clinical diagnosis!

I noticed you too had a lyme test and everything was normal, I take it was negative? Many of us do in fact test negative...but, with some bands that are positive! If your Lyme test was through a commercial lab using the ELISA titer....testing negative is what most of us do! The ELISA was never meant to diagnosis Lyme Disease,,,it was only to be used as a survelliance.

If you are considering a spinal, which again there are different opinions between docs, would you consider re-testing at a lab that specializes in Tick Borne Illnesses? such as IgeneX Labs in Palo Alto CA? they test for ALL the lyme bands.

here's a few links explaining why all testing is flawed:
http://www.anapsid.org/lyme/lymeseroneg.html
http://www.personalconsult.com/articles/summaryoflymediseasearticles.html

I hope you find your answers,
tory

[LATW]

Yes, you have helped a lot.

The TN...it hit HARD in 2002. I have since had a few episodes since then, but they have not been nearly as intense.  I did have some TN pain when my ON started just recently. My mom does have primary TN. She is being treated with Nurontin.

I keep Vicoden for my occasional TN pain. But have not gone on any daily meds for it. It is just so hit and miss. My first episode was my worst. From then on it has not been as bad. It is there....but has not blown up in to horrible pain like the first time.

Foot problem..... They did do an SER on that foot. But had a very hard time getting any response. She turned the voltage up and was finally able to get a reading. They did say it was ok though. So?? My pcp saw my foot and said there was reason for concern. They did not do an EMG on my bad leg. Only the SER.

I have fallen because of catching my toes or the front part of my foot. I will bring it to the attention of the new MS doctor when I go. I don't think someone who is active and healthy at 44 years old should have a foot that is not working properly.

The neurologist really did not seem all that interested in talking to me about any of my other issues. She did ask me about bowel and bladder problems. Well, yes I do have to go to the bathroom a lot. But she did not pursue anything more than just asking. It was so frustrating. I wondered why I even went to see her. She had a terrible time getting any response out of my right foot when trying to get a reflex. But my right leg was really responsive. Seemed a little too responsive!

She couldn't get any response when out of my right foot when she was looking for a babinski's response. Weird thing was she didn't even have me take my sock off. Is that normal.

My husband was with me. We both feel she had her mind made up before she even saw me. I guess she was taking the eye doctors opinion rather than really looking at me.

The eye doctor was thinking a virus because I had mentioned running a slight temp when my eye problem started. He said a temp does not go along with ON. Hmmm, I have found a couple sights about ON that state a temp DOES go along with ON.

I think the doctor is lazy. Or just decided I was too old for MS and was wasting her time. Who knows. I set the appointment up with her and decided I could cancel if I wanted. I will probably just go ahead and cancel. She seems to have already decided.

I don't want a dx of MS. I just want to find out why I have ON. Why am I so tired. Why am I having problems focusing in on things. Why is my leg acting crazy. I am a fairly active person in pretty good shape. I can keep up with 7 children! I am happy.

Not depressed. Not one to complain. It takes a herd of wild horses to get me in to see my pcp! He knows that. He said I just sit at home and suffer in silence. That is very true.

A spinal tap. That is something I know I probably need to have. I am going to have to take time to process that if the new doctor says he wants one. I will do it...but will have to work up the courage! Any advice on how to make sure I get good people doing it?  

I asked today if she had seen my c-spine MRI films.  They told me know. They said if there had been any concerns on the report she would have looked at it. So, she trusts the radiologist give an all clear on my c-spince but does not trust the radiologist enough to make a call of demylination on my brain.  Just seems wierd to me.

My pcp said he is concernd about MS. We have talked about MS in the past years because of some symptoms I have had. Nothing showed up in previous tests. Now a few mild things are showing. He did not like the neurologist I saw. He did not agree with the high bp or virus theory.

He has been my pcp for over 15years now. He knows me, he knows my family. I know in some cases that could be a problem, but in this situation it seems to be helping me out some.

Oh, and I have been tested for Lyme and Lupus several times in the past years. All of my most recent blood tests came back ok.
L

[Quixotic1]

Yes, all of those symptoms, put together is VERY significant.  Though the neurologist thinks she has a "better alternative explanation" for the two brain lesions, she is obligated to complete the workup.  I believe you need a spinal tap.  Neither the Optic Neuritis nor the episodes of Trigeminal Neuralgia are explainable by strokes.  What does she say about the "foot drop"?  She is not willing to acknowledge your subjective complaints, numbness and fatigue which do not fit with her bp theory.  Could she have looked at the films of the c-spine before seeing you or did she say that she hadn't?  If she hadn't, what she has shown is that she is not open-minded.  She is only willing to look at the films to refute a reading that does not mesh with her pre-established opinion.

Personally, I don't see any reason to see her again.  Why let her collect the visit charge?  When is the appointment with the MS Specialist?  When they did the SomatoSensory Evoked Potential, did they do it on the leg with foot drop?  And it was normal?  Then your need an EMG/NCV on that leg.  Foot drop is a serious problem and can lead to devastating falls.  You also need a referral to a good physical therapist who deals with neurological patients, preferably MS, but even stroke would do.  If you do have weakness in the anterior tibialis muscle (the one that sits against and just to the outsied of the tibia) you need to find out if it can be strengthened by resistance exercise or not.  If not, no matter the cause, you might need an ankle/foot brace to keep the forefoot up as you walk.

Your primary doctor (what's the opinion there as to the cause of all these neurological problems?) can give you this referral, it should instruct the PT to evaluate your muscle strength AND tone all over (to rule out spasticity as the cause of the foot drop) look at your gait, evaluate your balance and proceed accordingly.

I want to say something about the two spots "not being in the right place."  Yes MS has a characteristic pattern of lesion development.  But even in a "classic" pattern, some of the lesions will often be outside the "perfect pattern."  When there are only two it becomes less easy to say they "look right."  Not all lesions will have the perfect ovoid, clear edged, homogeneous, perpendicular to the ventricle appearance.  They may look different because of the resolution of the MRI machine, because they haven't yet scarred completely, or becasue they are newly forming.  You current neuro is very narrow-minded.

In my mind you have met the basic criteria for disease occuring spread (disseminated) in time.  That one is easy there is an old lesion and a new lesion.  The spread in space is a little harder, depending on whether the TN will be considered part of an MS process.  Primary TN is almost always progressive.  While it might be intermittent initially, it almost always steadily becomes more frequent and more severe.  TN from MS, on the other hand, because it is caused by an episode of demyelination at the origin of the 5th cranial nerve (trigeminal nerve) comes, lasts a  while and then often remyelinates - remits.  That area then is more susceptible to attack later and it can recur.

The ON is a second place of attack and the foot drop (if it can be shown to be central and not peripheral) would be a third.  That is enough to fulfill the McDonald criteria.  As I say.  You need a fresh mind looking at your problem.

You also need to get copies of the MRI and their reports, copies of the Evoked Potential recordings, if possible, and also of their interpretation and reports, for the new neurologist.

Hope this helps, Quix

[tory2457]

I'll sound like a broken record, but here goes.

I have a lot of your same symptoms..or used to.

Why don't you consider finding a doctor who is educated in Lyme Disease?
Lyme also causes lesions and demylination..and the symptoms mimic MS.

Here's a place you can post your questions on...and get a different point of view?
lymenet.org

I'm now btw, winning my  MS battle! Feeling really good.

the best,
tory