LP and OLIGOCLONAL BANDS

[Natalie58]

Hi-

Is there anything else the doctor looks for in the LP serum besides OLIGOCLONAL BANDS that could help with a MS diagnosis?

Thanks!

[Natalie58]

Thank you, Lisa. You are absolutely right and I shouldn't let myself be intimidated by doctors. Both my husband, my kids and I have experienced me living with all of these many different symptoms on and off  for so very long. Just as each persons symptoms of MS vary, we now believe the same is true for all of these tests. I only have lesions in one area, but have many other pointers toward MS. A friend of mine who is a neurologist (not mine, though) reminded  me the dx of MS is made from clinical symptoms and making sure one doesn't have a disease that mimics it. If I do have a mimic, they haven't found it so I don't think that is the case.
Thank you again for your support.

Nat

[LisaJF]

Natalie,

Young or old MS Specialists, does not matter.  If he has no answers then it is time to go get another opinion no matter how kind or compassionate he is.  Those lovely attributes are not getting to the matter at hand, right?

You're not rambling. It's your health, its your life.  It is understandable why you are feeling the way you are.  No question.

I always say, if it was a DOCTOR who had these symptoms and it affected his/her life in the manner of what you describe, trust me, they would push and push and push until they got answers.

You want to know what it is and want to do something about it so your quality of life is better for you and your family.

(I remembered my password again. Yippie!) A milestone!

Let us know what's going on.

Lisa

[Natalie58]

PS in regard to my neurologist. He is an MS specialist but he is very, very young. I'm not sure if that matters but he definitely sticks to the MCDonald criteria. However, he is kind and compassionate, just has no answers.

[Natalie58]

Thank you so much to all of you. I wish I was more pro active earlier on when I was younger, but once the symptoms go away, I just go on as though all was well. I did see a variety of docs over the years but none were ever concerned and, as I said,  once the symptoms subsided I just lived life as though nothing was wrong. There is no doubt in my mind and my husbands that I have been getting sick with these episodes more frequently the past few years and was no longer having "years"  in between episodes. It is mind boggling that when I do go into remission, I can completely forget about how sick I was. Until now, that is. This past episode was definitely the longest and the worst with the addition of new symptoms one being cognitive overload and sound sensitivity. Anyway, I guess I should be content that I do go into "remission". When I had the L'Hermittes  sensation a few years ago, I was scared to death but again, once I felt better, I just moved on. I also get the MS hug and once was rushed to the hospital by ambulance because my kids thought I was having a heart attack. My heart was fine, they explored my gallbladder etc. and I was released the next day. I have just started to read others stories on here and do see I am one of many frustrated people.
Anyway, again I'm dabbling but thanks guys for supporting me. I really began to doubt myself but thanks to my husband  kids and you guys, I feel much better.

Nat

[essdipity]

I agree with all that Lisa says, and, I urge you to see another neuro, perhaps several other neuros, till you get to the bottom of what this is. Not sure how many it took for me, but at least 6. That's not uncommon, believe it or not.

I was just over 60 when I joined this forum. I received so much information and support, and it helped me tremendously, so I try to pass it along. I have no medical credentials per se, so am just a patient, but now I'm a knowledgeable patient when it comes to MS. Don't know for sure if that's what you have, but I do know you deserve answers. Don't let any doctor foist you off using the age card--you know your own body and what's right and not right with it.

Keep us posted.

ess

[HVAC]

To be diagnosed I went to four Neurologist. The first moved out of the area after my first visit so I had no choice but to change Doctors. The second said she was sure I did not have MS. The third was a Neuro Opthalmaologist and she said I did have MS and needed to see a Neurologist. The fourth was a MS Specialist he followed me for a year and a half before he would diagnose me with MS.

I had 5 MRIs that showed MS, Evoked Potential that showed MS, went to a Neuro Opyhalmologist, had blood work that ruled everything else out and finally had 12 o-bands in CSF and not my blood serum. If I had not had the positive LP the MS Specialist would not have diagnosed me with MS. I have found MS Specialists like to follow you for awhile before they diagnose MS. Rarely someone will get a quick diagnosis. For most of us it takes a couple of years to be diagnosed with MS even with the evidence pointing to MS.

You can find a MS Specialist. Understand it might take months to get an initial appointment. In our area it is six months to get into a MS Specialist because there are so few of them and so many MS patients. Also when you get to the MS Specialist you may have to be followed for a few months or years for a MS diagnosis.None of my Neurologists took the other Neurologist's word for it.

I actually had my first Neurological hospitalization in 1965. I saw Neurologists my whole childhood until I was 16 and I was not diagnosed until 2009 after two years of tests.

Alex

[LisaJF]

Natalie,

There are many who can empathize the position you are in.  There are many who have been through numerous Neurologists (not to mention any other doctor you were referred to),  numerous diagnostic and laboratory tests, even repeat lumbar punctures (x2 for me). There are people who are diagnosed quickly with MS and there are those who have taken years and for some, decades.

You know when there is something amiss with your own body, therefore, as Kyle says, be your own advocate.

The 0-bands are not a make or break deal that determines a diagnosis of MS.  Nor is a marginal elevation of IgG synthesis rate or myelin basic protein elevation.  Sometimes none of these values are affected.  Everyone is different.

Don't give up hope and keep on trucking. You have the entire support of the MS forum here to help you go through this and listen attentively (and of course, your family and friends).

I would put more stock in what your symptoms are, when they happen and how they affect the quality of your life (as a mother of 4 to boot!) rather than LP results.

90% of the population has EBV in their blood stream.  It is either activated or not -- however, it is common that the doctor would reorder the IgG level of the EBV titer if the levels are high.


I feel you when you state that you're sick and tired of being sick.  I'd pretty much say that all of us here feel that way at some point or another. Some more than others, some less.  Either way, its your life that it is affecting.  

I know the sense of helplessness that you feel if you're not diagnosed with anything yet you have symptoms that scream "MS" or some demyelinating disorder or any other neurological disorder.  

It is not a common thing to have cervical and/or thoracic lesions.  It's rather the exception I believe than the rule.  Even with your age of 50, no hypertension, no thyroid disease, no history of migraines, or high cholesterol, etc. if there's lesions in your periventricular region, there's a little red flag flashing about. You know?

Now there are some who have tiny dots (pinpoints within the periventricular region and sometimes that is caused by vascular changes. However, if another MRI displays a new lesion, then that raises an eyebrow.

I can't tell you whether or not to go to another doctor. I myself had 5 Neuros.  Some had up to 7.  Some only had 1. That is up to you and your faith that you have in your Neuro or MS Specialist. If you are remotely feeling that you're not being listened to, being acknowledged by what you claim that is going on with your health and how it is affecting your life as well as those around you, then it is time to move forward.

Sticking with a doctor that you're not happy with is like sticking with a husband you're not happy with.  You can let months/years pass and allow the proverbial circle of getting no where since you first saw the doctor and still be posting in this forum repeating yourself and questioning  yourself or you can make the change (however hard because we don't want to be accused by being a doctor shopper). LOL.

How is your relationship with your MS Specialist/Neurologist?

Lisa

[Natalie58]

Thank you so much for taking the time to respond to me. This is the beginning of my MS work up because I was given 3 very vague and different dx for different symptoms over the years. I only had my first MRI a few months back that showed the lesions as a cluster. The dr said it was hard to ascertain exactly how many were in this cluster. My very first symptom way, way back in my 20's was frequency and urgency as if I had a UTI but I didn't. He said maybe I had interstitial cystitis but I researched it and dismissed it. Over the years, these weird symptoms would come and go and each time I thought and got tested for an UTI which was always negative. As mysteriously as the symptoms came, they would go. Then in late 20's I developed debilitating fatigue and couldn't do anything including work. I am/was very athletic and did triathlons etc. I had endless testing and everything was negative. Finally, I was sent to a different doctor and he ordered an Epstein Barr Titer test and my levels were incredibly high. I was then diagnosed with Chronic Fatigue Syndrome though I didn't have swollen glands or fevers. Eventually, this passed as well and when the symptoms returned we thought it was that. I could go for a few years w/o any symptoms at all and all was well. I have 4 kids and pregnancy were uneventful but I did get sick again with a few months of delivery with ALL four kids! We all accumulated to  my weird spells that came and went over the years. I developed other odd symptoms such as numbness in fingers and face, muscle related issues, the what I now know as the MS hug and the horrible L'hermmittes sensation that really, really scared me. Anyway, the eposides seem to be happening more frequently and now I have very severe pain in my neck which I never had before. I saw a neuro surgeon who said the DDD could be caused by MS but my MS doctor disagreed. Something is clearly wrong with me, I feel awful and I'm sick and tired of being sick and tired as well as having endless tests that lead me to nothing but worry.
I'm assuming you aren't a doctor but what do you think I should do? Wait unit I have another bad episode, look for another MS doctor? I'm so confused. I did find something that said elevated protein in csf in addition to elevated lymphocytes in CSF may be indicators of MS. This is why I posted my initial question about LP results. Thank you to all who have read this long rant and for any help you can offer.

Natalie

[essdipity]

Hi again, Natalie.

What the McDonald criteria boil down to is dissemination in space and dissemination in time. From the neuro's viewpoint, the best evidence of this is the MRI. If it can be shown that you have 2 or more clearly separate lesions in your central nervous system (can be 2 right next to each other in your brain up to multi in brain, c-spine and t-spine) you have fulfilled dissemination in space.

As to time, once again the neuro focuses on the MRI. If a lesion shows up today that was not there during the last MRI, that settles that criterion.

It can be maddening when things don't quite add up. Some neuros are very kind of anal, and won't believe the evidence they find during the all-important neurological exam, and follow-ups after that. Brisk reflexes, weak muscle groups, poor eye-tracking, obvious balance and walking issues, and so forth. And I'm talking here strictly about the evidence they see for themselves. As to what the patient tells them about sensory or cognitive problems, and on and on, many doctors discount these entirely.

The older you are, the more they tend to attribute abnornalities to the aging process, regardless of everything else. I know, because I'm just enough older than you to have been through all this, but ultimately I came out the other side, and I do have MS.

Just want to conclude by reiterating that you don't need lesions in any specific place in the CNS for a diagnosis. You don't need O-bands in the spinal fluid, though most MSers are positive for this. You don't need positive results on evoked potential tests and you don't need optic neuritis. Once again, on and on. Some of these are likely to be true for most MSers, but no one thing clinches a diagnosis. A good doctor evaluates the entire clinical picture before drawing any conclusions.

Remember that MS was diagnosed long before MRIs, and long before other sophisticated testing too. Lesions in the CNS can be inferred by other significant clinical evidence.

So, as someone who has been through your exact situation, I urge you to hang in there. And feel free to consult another neuro, or several others, as lots of us have done, including me. (If you do, be sure to compile al your test results, MRIs and so on to take to the next person.) Also remember that a neuro calling himself an MS specialist can be just that---self-designated. You need to see someone who has loads of MS patients going back years. Neurology is a big specialty, and few 'general neurologists' are truly knowledgeable about MS.

Best of luck to you.

ess

[Natalie58]

But what else can I possibly do? I do think my doctor is very good as well as kind but he is a MS specialist and said this McDonald criteria is what physicians go by. Does it seem common for one not to have lesions in other areas and no bands as well? Maybe I don't have MS but there is nothing else that can explain the myriad of symptoms I have had off and on all these years. When I'm in remission, I feel absolutely fantastic. Are there any doctors who don't go by this criteria.

Thanks for your time, Kyke!

[kwarendorf]

Unfortunately it is too typical. MS is a very tricky diagnosis to come by. The road is often long and frustrating. The only thing I can advise is Persistence. You are the only,best dadvocate for your health. It is uo to you to make sure that you are getting the answers you need, if not a final diagnosis. Don't be afraid to be a pain in the a*s patient :-)

Kyle

[Natalie58]

Thanks- I just walked out of my appointment and I am more confused than ever and scared as well. I am in my late 50's and I have had the clinical symptoms of RRMS for over 20plus years which my doctor confirmed. My brain MRI showed that I have lesions in the peri ventricular area of my brain but my cervical and thoracic MRI's were negative. My spinal results were also negative,  I do not have bands or elevated IgG but he said I do have elevated protein and csf lymphocytes which is consistent with MS. However, because I haven't met the McDonald criteria he can't give me a diagnosis of MS. So what am I supposed to do now. This has greatly impacted not only my life but my friends and family as well. I asked if not MS what could it be? I am so frustrated and confused. Does this sound typical? Thanks to all of you for your help!

[essdipity]

Yes, higher than the max listed means elevated. If it's only a bit out of range, though, some doctors discount it, as they do with lots of blood tests with ranges listed. Guess it depends on the doctor. Good luck.

ess

[Natalie58]

Does elevated mean above 0.85? Thanks, I just trying to understand all of this.

Natalie

[kwarendorf]

One other thing they look at is the IgG index. IgG is another indicator of inflammation in the CNS. The Reference range is CSF index: 0.00-0.85.

About 80% of people with MS have elevated IgG Index values.

Kyle

[Natalie58]

Hi Sarah-

Thanks for responding. Have you received a diagnosis of MS even though you had negative o bands?

[SarahL2491]

they only look for bands there, mine showed no bands, so not all of us have bands for some reason.

[Natalie58]

I meant to say in the CSF not serum!