CSF question for those who are very familiar

[syringles]

Please note, I have posted this to Dr. Kantor but would like some real-life experience answers as well.  Summary, I have been diagnosed with MS in 1993, then a syrinx found (i.e, other possible cause) which never grew and a huge attack in 2000 (brain MRI with lesions and history of Optic neuritis, 2 sets of SSEPs  4 years apart both abnormal and median abnormal above syrinx site which had shrunk and finally spinal tap which previously only showed elevated lymphs now had elevated Igg synthesis and index (apparently elevated 10X lab normal).  Moved to new town and had myoclonus badly which bothered new neurologist but has been resolved.  He had stated to me not enough evidence??? But I got a hold of detailed CSF which had hospital perform in 2007  which wasn't in his file (have new neurologist) and CSF no longer has elevated IGG synthesis but reads as follows:  "OLIGOCLONAL BANDS:  BANDS NOTED (reference range : no bands) "The patient's CSF contains >5 well defined gamma restriction bands that are not present in the patient's corresponding serum sample.  These bands indicate abnormal sythesis of gammablobulins in the central nervous system.  This finding is supportive evidence of multiple sclerosis , but should be interpreted in conjunction with all clinical and laboratory data pertaining to this patient."   I also had high CSF protein, Not Myelin Basic Protein.  My question to you is based on that statement, doesn't that mean I have Ooligolconal bands meeting the CSF MS criteria.  I got a little confused by the words synthesis and gammaglobulins in the paragraph but this was a comprehensive report and certainly this was the only section about Oligoclonal bands and the one noted out of range.  If you agree, wouldn't it have been prudent for the physician to have the detailed report?  Additionally, I am surprised that my body chemistry would change so much as to have such high Igg sythesis in 2000 not be elevated now and have no Oligoclonal bands in 2000 and > 5 now.  Any thoughts would be greatly appreciated.

[syringles]

I didn't think you were challenging me at all.  I have such a long history that I probably haven't even related everything.  While my family (especially my sister) who wanted me to move here to take care of me, truly wants me to take legal action as she and my own daughter went through that terrible month with me and listened to me tell them continually that my doctor would not call me back, then hear me say on the way to the hospital that they better hurry as this was not just my leg but something was happening in my heart and lung (apparently a Pulmonary Embolism happens when a clot breaks off somewhere else like my leg and goes through the heart to the lung) and I felt it all.  

His own prior letters (even as sarcastic and mean as they are) are what is going to hurt him as they state that I "station walk" and that I am ataxic, Contrary to the illegally dated EEG discharge summary saying I am "bedridden and wheelchair bound" and he's never been able to ***** my ataxia due to my inability to be tested.  The list really goes on and on but what I think it truly shows is a complete consciousness of guilt.

What I had hoped for was the new neurologist who was wonderful to give a more emphatic Yes but he wanted to see O bands and of course only I have the detailed records which of course is why I posed the question.  I will get these to him on my next appointment and finally explain to him what transpired as he actually has all these nasty, sarcastic letters but it was too much to lay on him during a first appointment when he was so kind to give me as I explained 3 hours total time of what a first neurologic appointment should be when testing for MS

So, I'm currently working with the hospital on amending the document and will give the new neurologist the detail with the O bands on my next appt which is only in May which will finalize his needs for an official diagnosis which I really already had before moving here and the first neurologist I had here.  

At that point I will approach an attorney and hopefully have all my documentation in order.  My primary will support me as she has already guessed the cause and is quite angry that the Keppra IV was not noted.  

Also, thank you for noting disciplinary actions as I had not even thought of that.  I have been thinking that a lawsuit would just make me look like I wanted money but I truly believe that he needs to be on record as having changed a medical file on purpose and if  screaming at me in the hospital about not having "O" bands makes me wonder is he that bad of a physician that he never looked at the detail or did he never request it as the cover page stated "Bands Noted".  Any good neurologist would see that and want the detail -- don't you agree?  Plus,my phone call for the records garnered the detail so wouldn't the doctor get the same?  

I think I'm starting to repeat myself which is the unhealthy place I go so I'll go for now but thanks for the idea the complaint to the Board of Medical Examiners.  

Leslie

[Quixotic1]

This doctor needs disciplinary actions for his illegal and unethical behavior.  This will only happen if a complaint is filed with the Board of Medical Examiners.  You can show damage due to the inapproprieate use of meds leading to the increased somnolence which made you sendentary and lead to your thrombosis.  this is the criterion on which they decide if a malpractice suit has merit.

Please know that I was not challenging anything you had said.  I just wanted more info.

I see your point about SSDI, but this doctor already has it in for you for some unclear reason.  I can't imagine he would be more vengeful if faced with a malpractice suit.  Actually, he would tend to be more benign toward you if he was faced with an accusation that he took extra steps to be outrageously harmful toward you such as screaming at you while you are in the ICU.

If records are truly inaccurate they can be forcibly amended to include the truth - if you have documentation.  You might need an attorney to guide you through this.

This guy really went berserk on you!

Quix

[syringles]

Like I said I have to stay positive to say healthy as you all must know but there are considerations for other people, future doctors who may read these records (just like my new one only getting a statement that bands were present but really not significant pathology). I do have something to show him now but I really shouldn't have to do that.  But the other thing to consider is I'm on LTD and it had that clause in it about having to get SSDI first.  Can you imagine if they did a review right now???  I know I have all the correct backing I need but it only takes one tough cookie who wants to be all important and get somebody off the roles and I might have a fight on my hands so I have a lot to think about.  In the meantime, I am grateful for the AFOs and the ability to actually walk with my walker and go out for Easter without my wheelchair, And for now hopefull not jerk while sitting down at Mass.  

Blessing to all.
Leslie

[Lulu54]

Wow! What a nightmare.  my head is spinning from all the twists and turns you have had on this journey for the past three months of so.  I'm so sorry you have had this experience.  

Thanks for sharing this - the other important lesson beside keep all of your medical records, is as the patient you are inc harge of your care - if you don't feel you are getting the treatment you need, find another doctor.

hang in there,
Lulu

[syringles]

How in the world he could go back and write that is so incredible unlawful.  I called the hospital as I know you can have your medical files amended (not changed).  I was told first that he only had 30 days to write that report then I said you better get a supervisor as this was done long pas 30 days and past the time he was my doctor.  I talked to a supervisor and told them he was using their hospital to cover himself as Keppra was given and made me sick.  He even went so far to put that there has been no substantial pathology for the diagnosis of MS.  Then on the bottom in his Discharge Instructions he says (as if it was that day) he is going to stop my Topomax. He discussed with me going to the University Movement Disorders Clinic (which he didn't he said Mayo's and a nurse left that message 2 weeks later) and then he states he will see me p.r.n.  He must have forgotten that there is a videotape of this!!

I happened to have saved my discharge instructions which clearly state not p.r..n. but 2 weeks  and above all it is very clear that stating I was bedridden will clear him in his mind as he must have forgotten about his other letters, but this is his way of clearing him of my statement that the Keppra made me sleep all day and they wouldn't help me.  

I am trying to stay positive and don't know what to do about legal action.  I would hate for any young person in their first attack to have to deal with this man.  I did have my other appoinment and it was like night and day.  He spent 45 minutes reviewing every slide of every MRI.  I tried to present him with the more complete file but he felt he had everything he needed.  I knew that woulnd't be enough.  However; he performed (unlike my 15 minute exam with the other neurologist) a 1 and 1/2 exam at the minimum and I know clearly he found deficits.  He then told me that my Dr. in PA was not wrong to diagnose me with MS.  He said he really wanted to see Oligloconol bands and I had not looked at this detail enough to be able to say "wait" it's here but he was sure I had MS but would evenutally like to see O bands even if it meant another tap which he didn't want to do to me right now.  He is giving me my Imuran and Topomax but asked me to take Baclofen which I use to say no to as I thought it upset my stomach but this guy is terrific and I will be able to go into my next appointment now that I hear what you guys say and I am assuming Dr. Kantor will agree that I indeed have O bands.  

I really wasn't going to tell my entire story but if it helps anyone, and you think your doc isn't really behnid you, these days they do send everything to the primary.  She was hinting there might be an issue, saying things like are you happy with him?? Is he doing enough for you?  In my wildest dreams I never thought I would see letters like that or find a doctor who actually lied.  Thanks to all for your comments
  

[syringles]

You see, he had gotten angry during the previous fall when I couldn't remember all my medicines so I made a list not only of the meds but of all my conditions with those being on top.  For instance, "Patella Femoral Syndrome" which I listed so he would know why I take Celebrex.  Then I listed "Facor V Leiden Positive Clotting Factor" found after DVT in 2005, kept on Coumadin for only 6 months by then Pulmonologist and verified needed only 6 months by University Hematologist in University Hospital in this city.

I always let any doctor know I am Factor V Positive.  I continued to try and get steroids for the rest of the month and received not one phone call.  The only phone call I got was one on my answering machine stating I was being referred to a Movement Specialist at the local University Hospital but they probably wouldn't see me until June.  

When it came time for my appointment on January 20th, I found I could not even tie my shoes and called the office to tell them that and had to reschedule to the following week until a family member could drive me.  I told the nurse that this is how bad it had gotten and if they didn't prescribe something to get my strength up or take me off Keppra, I was scared of what might happen.  Again, no phone call back.  But before I could see him, I noticed on Sunday the 25th a large swelling in my leg and by the time we were on the way to the hospital, I had heart and chest pain.  They admitted me originally to Medicine and my sister was so upset she called the neurologist to tell him where he would find me as I wouldn't be at the appointment.  I had by the way called my old doctors and it turns out they had never received a phone call and told me they never would have accepted it without my written consent.  I was so angry at him on so many levels that for the first time, I had courage to speak.  He appeared at my room and told me (instead of waiting for my other doctor) that I had a Pulmonary Embolism on top of the DVT.  I told him I have been trying to get your help for a month.  The Keppra was making me sick and I couldn't even walk.  You decided from day one because of my myoclonus that this must not be MS but never would listen to my about it.  Then you lied to me (his face was turning very red and 23 year old daughter walked into the room) you lied to me about calling my old doctors as I've talked to them and you never called.  He had the audacity to say the one that counted from Philly (the famous neuro-opthomoloigst) is the one he wanted to hear from and he is a busy man and had not yet touched base.  I said you're ignoring everything I am saying.  

Her'es the important part and why I posed the question.  I said what do you really think is wrong. He said, I think it is psychological.  I looked at my daughter and said do you hear this he thinks I'm a nut.  I asked him so how would my mind have changed my body chemistry and have my spinal tap have elvated igg and how would my mind tell my urethra and rectum to not move during a urodynamic study when tested for a neurogenic bladder (which I know you can have without MS but I was trying to prove a point) and I asked how I could have how my mind could create lesions etc. Then he screamed and I mean screamed at me in the hospital with a Pulmonary Embolism and said "YOU DON'T HAVE OLIGOCLONAL BANDS".  

So you see, he either is so incompetent as to have never acquired the detail or truly lied to me.  There is a reason I am willing to believe he lied to me.  Since I have acquired his letters to my primary, they are in no way medical in nature but proceed to make fun of me and even as early as my third appointment in 2007, he states that I refuse to talk about a psychologist but if he had even brought that up, I would have gone to a different neurologist back then.  He does note that I am able to station walk with is very very important.  But he calls my myoclonus flailing.  I have seen 3 neurologists before and after the neurologist of 9 years and they had no problem with it and I just don't know why he did.  I only needed five minutes of his time to explain it was a resting myoclonus and only happened sitting down.  

I was lucky however; that after releasing him I happened to be in hospital that had true in-hospital rehab and my Hospital Dr. was so kind and had me bring in my records and had the rehab department come and look at me.  I was admitted for 3 weeks in-hospital rehab.  And to your point of PT not being able to cure Myoclonus I am quite aware of that and know that it can come back.  I think the real point was that we all got a lesson on Myolconus.  I have had physical therapy as an outpatient but these guys are truly the greatest.  I remember when she layed me down and would try and get me to move a leg and everything would jerk.  They she would tell me not to move anything and she would lift my legs and nothing would jerk.  So this was the start of a learning process.  My muscles were in such bad shape that the simple startle reaction of myoclonus in my case was greatly exaggerated.

Since I told them it happened mostly sitting in my wheelchair and learned of course that it takes muscles to sit up, we concentrated on that area, but worked on all.  Unfortunately, the not being able to walk right that I kept calling the doctor about during January ended up being Drop Foot and I now have to wear AFO's.  I'm still pretty ataxic so I also use a walker.

Here's the worst offense from said Doctor about what he did with my records.  I had met with my primary who unfortunately said she could only send to the new neurologist, who would only accept a referral, paperwork generated since she was my doctor (meaning the first neurologist who quit after a year of me living here then this neurologist of question whose letters are full of mean statements and hardly any medical statements at all and as I came to learn no CSF analysis only his statement that bands were noted but no significant pathology!!!!!

That's really not the worst.  I let him go obviously on 1/26/09.  My very bad experience with the EEG was 12/17/08.  When meeting with my primary and telling her everything that had happened as she knew I was going for the EEG but had not met with me since as I didn't go to a hospital she covered, she pulled up the EEG report and saw that it didn't mention giving me any medicine.  I insisted that I had Keppra and that was my problem for a month.  She said she's rarely ever heard of anyone being given anit-seizure medicine during an EEG.  She was shocked not to see it documented and she was reading from a scanned document in a laptop.  She had me relate what happened and said that obviously by his ignoring me after the Keppra made me sick, I got the DVT and PE.  I told her I was trying to concentrate on the positive right now but I did agree.

Then I got a copy of the EEG Summary and it was noted as Summary Discharge 1B and dated 2/3/09.  He was not even my doctor at that time.  I called the hospital as I noted he just might be using them to help cover up what he had done.  The history doesn't note that he took me off all my meds for the myoclonus and that I showed up in worse shape.  It never notes that an IV push of Keppra was given and contrary to his own letters which he must know exists,,, he states the patient is generally always wheelchair and bedridden.  

[syringles]

I don't know if he intentionally lied or never requested the "detailed" report like I did because when I reusted his office files after releasing him, I noted that there was a page from the CSF results stating O Bands Noted but it was a fax and the two next pages were missing so I called his office and asked where the two pages after the summary CSF were and they said they didn't have them which made no sense since the following pages were about me (they were pages about MRI's done the same day).  She insisted that the hospital frequently sends other patient records in between.  I proceeded to obtain the detail of the CSF studies myself which is 10 pages long as most of it as you may know is repeats only 3 pages are actually detail (seemingly they rerun or one or two tests take longer).  

The reason I posted as I was pretty sure I was right is that this doctor is known as a "great MS doctor".  I believe from day one it was they Myoclonus that turned him off yet he never gave me five minutes to explain it.  His letter to my primary are incredibly hurtful.  To your questions though......The neuro-opthomologist who saw me in 1993 with a scan or quite enlarged nerve sheaths diagnosed Optic Neuritis.  I didn't have lesions then but he was worried about MS so tested for every mimic there is, even syphillis, lyme, Sjojerns, and on and on and proceeded to almost be my primary as my primary just wanted to give me pills.  

I also asked the question ask I am surprised that the Igg synthesis can go away and after 19 years, I suddenly have O bands??  I have been told I am a complicated case.  But this neurologist had no right to treat me with no dignity and lie to me time after time.  He asked permission to call all my prior doctors which I gave.  He continued to state to me "well I've called all your past doctors" and I never thought to ask "what did they say" as it would have helped him.  He was focusing on a somatic disorder or possibly a movement disorder but kept writing that I had no biological proof of anything even though I presented him with 300 pages of records including MRIs , CSF studies, SSEPs from 93 and 97 both abnormal, plus all the mimic exlucsions.  

He asked me finally to have a video EEG and I agreed just to satisfy him but he took me off my Topomax which I had been on for 6 years (that is completely contraindicated) and he took me off Imuran which had been working very well. So I show up at the EEG instead of only jerking when sitting in a chair which I tried to tell him but jerking constantly even while lying down and it was very very embarrassing.  This was 12/17/08 and at 2:00, he had a nurse come in and IV push "Keppra" which unlike medicines such as Tompomax and Neurontin is only for partial onset seizures.  I proceeded to have a terrible reaction with entire body jerks so bad that I called for the nurses and had lost memory.  He comes in the next morning and jokes about my "event" and said nothing showed on the EEG and I told him I knew this was not seizures but the medicine certainly didn't agree with me and taking me off my others was why I was in such a state.  He told me "Maybe we'll send you to one of the Mayos and left.  To my absolute shock and dismay, I was given a discharge sheet to see him in two weeks and a prescription for Keppra the very medicine the gave me during the EEG.  

I had no choice but to take this medicine but noticed almost immediately that it made me sicker.  I barely made it through the holidays as I was in charge of a gift giving program for the poor and it took every piece of me to make it through.  The last time I left my house was to the grocery store of 12/31/08.  I proceeded to lie on my sofa or bed for the rest of January.  I called his office numerous times as I was experiencing some type of sleepiness as If I felt like I would likely just rather die.  I woke up around 3 to 4 pm. and would go to bed at 9 or 10.  I knew I could be in for another health crisis as I am prone to blood clots.  I wore my thrombolitic stockings and most importantly, this doctor knew that and when calling his office for help, I specifically told them that I was no longer able to walk at all, was sleeping all day and the the doctor knew that wasn't good for me.  

[Quixotic1]

Hi, I'll try weighing in here.  It sounds like you got the diagnosis of MS in 1993, but had it removed sometime therreafter because they discovered the syrinx and it was a better?? answer.  But, then you had more symptoms and the syrinx was found to have shrunk.

You have had multiple attacks, unclear what deficits you have on exam but you have evidence of at least three areas of demyelination with the SSEPs (above the site of the syrinx) and the optic neuritis (was it documented by exam, visual fields or VEP?).  

Also we don't know what other work up you have had for mimics.

But, it does sound like you have made criteria for MS, depending on some of the things listed above.

The CSF is pretty clear.  The earlier LP showed an elevated IgG Index.  This is taken by the majority of the neurologic field as a "positive result" pointing toward MS.  It is less specific that the O-Bands for MS, and we have heard of neuros that onlu accept O-Bands.  The subsequent LP showed that you DO indeed have  5 unique O-Bands.

Does this prove you have MS?  No, but it is also a piece of strong evidence.

Any neurologist that treats you as this one has should be left in the dust and reposrt to his state licensing board for unprofessional behavior.  Other than reporting him I say do not give his opinion another thought!  Yes, he decided early that he didn't like you and was not going to consider anything that countered his "decision" that you don't have organic disease.  You can't get far enough away from him, in my opinion.

Yes, if you do have more than two distinct attacks, and some abnormality on exam, lesions on the MRI other than the syrinx, and the mimics have been ruled out, then MS would seem to have been ruled IN.

When you see the next doc, I would be careful about how you speak of the attack which involved myoclonic jerks.  In MS you would not be able to overcome them them in PT.  PT does nothing that helps MS damage to heal.  It just helps up cope with whatever damage we have better.  I suspect what happened is that the lesion causing the jerking gradually improved/healed during the same time you were doing the PT.

All that said - Yes, You have Oligoclonal Bands - 5 of them.  Most neuros consider 2  more as positive and some, like from the Mayo, consider 4 or more as positive.

Quix

[PastorDan]

Well, as everyone's aware, I'm not a doctor, nor do I play one on TV, but you have me convinced.  It sounds like you have MS, based on SSEPs being repeatedly abnormal, MRI lesions, episode(s) of ON, and a lab report that certainly sounds as though you have several more O-bands in your CSF than in your blood serum.  The question on which I wasn't clear is whether or not you need a new neuro.  Is the present one denying that you have MS, and therefore not prescribing appropriate treatment?  If it's a neuro from your past, my personal advice would be to just make sure the present one has all the old information, and stand up for yourself; refuse to give them the leeway to gloss over all your evidence.

[syringles]

I am a terrible editor....I stated in sentence 2 that my SSEPs came out normal, I meant to say abnormal which was the basis for the first diagnosis.  

[syringles]

First as far as the criteria, I meet all of that as far as attacks/space time dissemination so that's the clinical part, have had Brain MRI's with lesions, plus Optic Neuritis confirmed by a Neuro Opthomologist, and 2 other paraclinical tests, the SSEPs I mentioned which over 4 years both came out normal.  My problem was a recent neurologist who didn't care about the highly elevated igg syntesis on the 2000 tap and only Oligoclonal bands.  I got his files and he only had page one which said "Bands noted"  I proceeded to obtain the detail which was ten pages as I believe some tests take longer and right there I see the Oligoclonal band statement which I posted as he had told me I had none.  This is why I wrote. I left his services as he also wrote that I had no clear pathology for MS and he had all the records I just wrote about.  I believe his problem was my Myoclons and he couldn't stand me from day one which is reflected in his letters which are not in any way medical in nature but proceed to make fund of me and call me somatic, histrionic all because of the myoclonus which I have stated went away with some terrific physical therapy.  It is never completely gone as it is a symptom and I have been told it is likely to come back.  That is the reason I posted to the Dr. as I wanted a plain simple answer.... Do I have Oligoclonal bands or not....

[PastorDan]

I believe that the reverse is also true: O-bands alone do not a diagnosis make.  I'd count Quix the expert among us, but read the McDonald Criteria health page and recent discussion forum thread for more info until you hear from Quix.

[sllowe]

Hi there,

Welcome!

Well, I don't understand either.  What was the Dr. referencing when he said "not enough evidence?"  You stated that you were dx'd with MS in 1993.

It appears your CSF was positive for O-bands which were not found in your blood serum, which makes it positive.  If you have a chance go to our health pages and look at the table and write up on O-bands - it will shed some light for you.

Its very possible to not have O-bands and still have MS. Many here had negative O-bands a the time of tap. So, what I'm saying is that it may or may not always be the same. Also, they may not have done the synthesis on the 1st tap - just not sure unless you write us what it said.

Hoping some others will chime in too soon...

Hope to see you around!