Dissapointing Neuro visit.

[Ramraji]

Hello all,
I went to a new Neurologist today (I thought he was an MS specialist). I wrote down a timeline of my symptoms and gave him copies of all my test results. What came out of his mouth was what I have read so many times here. He said " you don't have MS" and then he began to ask me about anxiety and recent stress. He totally dismiss my symptoms and said He could refer me to an MS Specialist but it would be a waste of my time as would any further tests like the VEP or LP.

I am a little discouraged to say the least. I know something is wrong with me and all this guy wants to do is give me anti-depressants. I mean I'm not praying to Dx'd with MS but I would like some compassionate treatment with some real possible causes. I hate the medical version of a brush off.

So here I am a member of "Limbo Land". Next step is to make an appointment with DR Lublin the real MS specialist and take it from there.

Rick

[Quixotic1]

I am going to refer you to the thread "Q's for Tory".  Although I had problems with part of her answer she did state that Bands 31 and 34 are" very specific for Lyme."  You might want to explore the meaning of this positive band.  IgM is the early antibody made at the beginning of an infection and converts within a couple weeks to IgG, which is the long lasting one.  I don't know if they place any special meaning to a positive IgM or not, but believe me, they'll tell you!  

There is a site that you can post your Igenex results with and get their impression of how likely a Lyme infection is.  Tory has mentioned this site several times.  As much as I would like to see that thread die a slow death, there is another Lyme expert "sojourner" there who would be glad to interpret your results.

Her recommendation will be to find a LLMD and get treated.  I am more likely to believe that it is the EBV/MS link but, without any real reason - just stubborness, I guess.  In the face of no better answers for your symptoms, at least Lyme is treatable.

What were your EBV VCA, EA, and IgM?  

The vast majority of people who get EBV get it very young and it's a completely nondescript illness.  Only a small minority, usually adolescents and young adults, get what people think of as true "mononucleosis."  Also, a large number (sojourner can tell you) of people infected with Lyme have no acute symptoms, or none that they notice.  Depending on the memory of a tick bite, followed by a flu-like illness and a bulls-eye rash is a common mistake.

Good luck, I'm tapped out for the night.  I do not like controversy, but today I brought it on myself.  Quix

[Ramraji]

Quix, My EBV IgG is 3041 and my Lyme IgM Western Blot was positive on band 31 and negative  IgG. Also the Lyme PCRs were negative. I don't ever remember having mono or Lyme symptoms.

Thanks for the stats on EBV and MS. This is very interesting and makes me suspect MS a little more as the cause for my problems.

I will have to ask about the anti viral meds at my next neuro visit.

Thanks Quix, You are fountain of information.

[Quixotic1]

Good thing you guys can still think and ask questions.  A link between EBV and MS?  Absolutely Positively, sort of....There have been two viruses most commonly linked to MS, both as early triggers.  The first is EBV.  Several studies have looked back at blood samples frozen by labs.  One large study looked at about a 1000 people between early 1960's and early 1970's that they were able to trace down and find. They ran EBV titers on the frozen blood and matched these against people who later developed MS.  Approximately 95% of all the blood samples were positive for EBV.  !00% of the people who developed MS were EBV postive.  When they crunched the numbers it appeared that those people "with the highest titers" in the frozen samples (I could not access this study for what the levels were of "highest titers) were 30 times more likely to develop MS than the people with lower titers.  A similar study was done in about 1988 with 83 people with MS and 166 without MS.  Again the  seropositivity in the ms group was 100% and that in the nonMS group was about 95% (statistically significant).  The MS group again had much higher titers on the earlier blood samples.

The other virus studied and found similar results is the Human Herpes Virus ^6 (which causes Roseola - a febrile, red rash infection of young children)

Since then many studies have found indirect links to both viruses as being involved in the triggering of MS.  They are both hard to study because infection rates in the general population run above 90%.

I can give you some cites if you want.  Nothing has been determined conclusively, but the data is tantalizingly suggestive.  Other infectious agents implicated in MS are, of course, if you were reading todays skirmishes are the Lyme spirochete and the atypical bacterium Chlamydiae pnuemoniea.

I am seriously considering having my EBV titers run.  I had classic mono in high school, just after I had Rubella.  

Rick, where are you with Lyme, Igenex and that testing?  Are you the one that had negative IgG and 1 positive IgM?  Quix

[Jazzyfizzle]

Hi Quix,  I have the same Neurologist as Wanna (Super Doc  lol), and he is treating my high Ebv with anti-virals also.

Jazzy

[Ramraji]

Hi Jazzy, I'm kind of new here and I haven't posted a lot until recently. Thanks for the welcome! My symptoms started in 2004 with dizziness with ringing and fullness in the ears. The first symptoms subsided after nine months then returned worse last November with burred vision, neck pain and headaches.  The most recent symptoms started in May with the "MS Hug" and then tingling and numbness in the hands and legs with spasms in my legs at night. These have faded a lot except for the leg muscle pain and spasms. MRI's have been clear so far and the other tests are all negative.

I am now waiting on seeing  a MS specialist on the 19th of Sept. Interesting about the EBV antibodies though! I wonder is that a common link with MS?

Rick

[Quixotic1]

Wow, EBV titers in the 3000.  would you be able to get and give us the breakdown of the various antibodies?  They usually do at least 5.  We have a member (Want to Feel Well!!!) here who's neuro believes that the  high titers are the casue of her extreme fatigue and is treating her with antivirals!  Although it is felt to be uncommon chronic or reactivated EBV can cause  significant fatigue, but usually with some lymphadenopathy.

Another thought.  EBV is well-associated with Guillain Barre an acute form of ascending paralysis.  I don't remember, how long have you been ill?  Have you had an LP?  there is a chronic form of this, not as closely associated with infection called CIDP - Do you know anything about it?  I'm going to go back and reread your earlier posts to see if it fits.

As for the hazing.  Your assignment is to go over and fight it out with the Lyme people, lol.(kidding), but welcome to the Greek House.  Bonfire on Friday night to roast some weenies and neuro's.

Quix

[Ramraji]

Hi Kristin, Thanks for the welcoming words. I think I remember reading that you live in Vero Beach? My aunt and cousin live there. My cousin worked at the radio station as an on air personality. I don't remember the station. The show was called Barbara and the Bear I think. I did read about your struggles with your neurologist and I guess that helped me prepare for what my Neuro told me.
Thank you for the support and encouragement. It is good knowning that I'm not alone in my struggle for a Dx. I do appreciate your concern for my wellbeing, I pray that you will be blessed ten fold in return.

I just pray I will be healthy enough to keep working in my field. I have eight years to go to retirement and I really hope I can get through this in fairly good shape.

All the best to you and your family, Rick

[Jazzyfizzle]

Ok see how the brain works   sorry if you are not new to the forum. I can never think straight!

Jazzy

[Jazzyfizzle]

Hi Rick, I'm sorry that you are in limbo land, its not a fun place. But a big welcome to the forum.
Your high Ebv antibodies are simliar to a few others, myself included.  What are your symtoms, did I miss that, the white matter brain.. it functions LOL

Jazzy

[Ramraji]

You sure do belong here! You have lifted my spirit by your encouraging words. So even if your not an MS expert just sharing your experiences both good and not so good can help. If your test are negative then you can try the Urologist route. I can relate to wanting to get some positive test result just to get the whole diagnosis thing behind me already, but I am thankful that my disease has not progressed to a level that has done a lot of damage. So there is a mixed blessing in having negative results I guess, it is just so frustrating not having definite answers.

So, I hope you will stick around here with us. You have already been an encouragement to me (us) and I hope I (we) can return the same to you. Please let us know how things are going in you search for answers to you questions.

All the best, Rick

[Ramraji]

Hello Ida, Thank you for you encouraging words. I appreciate your sharing your experience with the anti depressant approach to treating MS symptoms. I am really trying to avoid that route at all costs because the side effects will probably be worse that what I'm going through without them.

I agree with you that the information and support that I have found here is far better than anything that the three overcharging Neurologist I've seen have given me. This is a special community of good people who are dealing with and helping others deal with a common struggle. I am greatful to have found this place.

Thanks again and best wishes to you.

Rick

[floridamom2]

Hi!
I don't think we have met but I have had the exact same response from my first neuro that you have just experienced.  I am so sorry you had to go through that!  I have found a new neuro and am on my way, hopefully, to figuring out what is causing my sx.  It seams alot of us here have had to go to a few different doctors before we found one that listened and tried to help figure us out.  You need to stay your course with the new neuro appt. and know that we are all here behind you pushing you forward to a dx!  I will be thinking about you.

I am glad your Sx have subsided a bit!  Hang in there!
Kristin

[Ramraji]

Hi Quix, Yes I think I meet all the requirements to become a pledge to Hypo Gamma Chondria. I just hope I can survive the hazing process!

I made my appointment with Dr Lublin today. He doesn't take insurance which is a bummer. I will have to lay out some bucks and hope to get a fraction of it back from my insurance. I have no other choice, I really want to get to the bottom of this for my peace of mind. I will let you know what happens when I see him on Sept 19th.

I saw my nuritionist guy today and he agrees with me that there is something nuerological going on. He said he thinks it might be either the onset of MS or it could be something else. He did say that EBV antibodies were in the 3000 range. He thinks it may have something to do with my symptoms.
I will follow his nutrional regimen for the next 30 days and see if I feel any better. He also encouraged me to see Dr. Lublin because he said so many Neurologist won't give you a Dx of MS unless you fall into the MS Dx parameters.

As for test abnormalities, nothing jumps out and says anything out of the ordinary. I'm the healthiest sick person that I know!  I guess my legs didn't get the memo that they are OK. Alot of the tingling and numbness has faded, but I have been feeling really tired lately. The muscle spasms in my legs are still there but not so bad and I haven't had the "MS Hug" for about a month and half.

Thanks Quix, for caring and sharing. You're the best!

[Quixotic1]

Hi!!  Have you been lurking all along??  Great to see you and I hope you are doing well.  It sounds like - not.  What's going on?  I wish we had the Magic cure here!  Quix

[3boyzmom]

Rick,

Thank you for the note and words of wisdom.  Sometimes I don't feel I belong here.  I'm not sure what to ask or how to respond, only offer some encouragement.  I was thrust into this, and frankly am not sure what is going on.  I'm also lucky that I'm being sent right on through testing and not at the mercy of Dr's taking a slow approach or no approach.   If these tests are negative and I'm not even sure what I want them to be, as I'm just tired of not knowing.  I know many people have struggled much much longer than I have and I can't imagine what they/you are going through.  Back to if these are negative I'm going to follow the advice of the urologist who wants me to see a specialist in Houston and I'd probably see a Neuro there as well.  I live in a smaller city (not small, but not Houston where there are great hospitals and teaching hospitals) and I'm a medical mystery at the moment to the Dr's.

Good luck, see that MS specialist.

[Idab]

Hi, I have posted here before and, like you, these wonderful people have got me through the 'undiagnosed' phase of my life and a very disappointing Neuro appointment as well.  But unlike you, I went for the anti-depressants, along with its many side affects.  The result - an upliftment in soul, a kind of numbness to everything around me, yet the intermittent bone pain that so often keeps my mind spinning on a daily basis, slurred speech (which has become an embarrassment in my workplace), swallowing difficulties and headaches with lots of eye pain still continue to plague me.  You are in good hands here with excellent advice, better than any Neuro specialist could every dream to offer, so stick around and keep us posted with any findings on your next visit to the MS specialist.
IDA

[Quixotic1]

Hey, you want to pleadge for Hypo Gamma Chondria?  Sorry that happened.  Boy, when a neuro is not interested it really shows up.  How are you feeling?  Have any of the symptoms faded away?  Do you have any abnormalities on exam?

Tell us what you think of Dr. Lublin.  Quix

[Ramraji]

Thanks for encouragement. I'm glad that your Neuro seems to moving you on the fast track for a Dx of your symptoms. Ask If you can get the 3 Telsa MRI machine it is supposed to be some what better in picking up MS related damage. I hope you will get some answers to you questions.
Just be aware some people on this board have seen five Neuros before they were properly Dx'd. Some have gotten lucky and have been Dx'd on the first try also. Hopefully, you will be spared the run around and be able to get to the root of the problem so that you can get the right treatment.

Best wishes to you and keep up posted on your progress. Rick

[3boyzmom]

I'm so sorry.  I hate reading posts like this where people are just dismissed.  I also saw a Neuro today for the first time, and already have a complete MRI work-up tomorrow (Brain, C-Spine, T-Spine all w/ and without contrast).  While I don't want them to find MS, I want to find something so we can end this mystery which I've only been on for less than 3 months, and it is making me a crazy person.

I did not go in with a timeline, but I think my situation is different than most.  This came out of the blue, and no Dr so far had really said what they thought it might be just a sudden Neurogenic bladder is a huge red flag.  It was only Dr friends who were aware of my situation that asked if the Dr's thought it was MS.  I wanted to go in with a complete open mind and let the Dr tell me what he thought.

Make that appointment with the MS specialist.  Best wishes.