98474 tn?1240105274

no brain leisons but 3 postive lumbar punctures

As time goes on and knowing that everything else was ruled out when I went thru all the tests, I continue to
progress with weakness, swollowing problems. My lumbar puntures where positive for ms with 12 bands in my csf but not in serum. I have been to ms clinic, had evoked pot done, Brain scans always come back normal.
My question is..should I be on ms meds to keep this from progressing? Since they will not give me a definative dx cause no one wants to go out on a limb, what should I do? One neuro told me I should maybe think about being on meds and another offered me the meds. It is just that others have said I don't have it cause of my brain scans and the Poser Criteria. Don't know what to think and hate to be on injectables but am loosing ground. Am 57 years old and would like to get as much as possible out of the next 10 years. Any help is appreciated.
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Avatar universal
Just a prefix to this: I'm not a doctor, just someone who likes reading - my interpretation of what I have read may or may not be correct.

What type of Scan was it? CT or MRI? Brain only or Spinal also? Lesions could present in either location.

If CT (unlikely) you should ask for an MRI - CT Scans have shown to be only 25% effective in detecting MS lesions.

If MRI what kind of machine? (1,2 or 3 Tesla etc)

Each type of machine has a different minimum lesion size at which the probability of detection goes down - The higher the number of 'Tesla' a machine has, the more reliably it is able to detect smaller lesions.

It's because of this that generally an MRI is not THE definitive thing for diagnosing MS, depending on which literature you look at between 5 and 20% of patients presenting with what turns out to be MS initially have a clear MRI (the lesions are too small) - that being said, as time progresses and symptoms increase you would expect any tiny lesions to grow to the point where they would be detectable - and because of this, in general, an MRI is an important factor in confirming MS - if it's MS you MUST show lesions on the MRI eventually... even if you don't initially.

It's also VERY important when you do not have a clinical history consistant with MS (2 MS Type events, in different areas, seperated by 6 months) - since when the MRI CAN detect lesions, it can then be used with contrast to help differentiate between old/new lesions that might not have produced definite symptoms and hence help a diagnosis.

What type of EP (evoked potential) was it? What did it show? Evoked potential tests can be useful in detecting Demylinating events that are too small to show on an MRI... and can also help detect symptoms you might not yet be aware of.

In the end, MS often becomes a disease of exclusion - I can understand how without more results that help in a differential that they may be nervous to put a definitive label on it - especially since, as you say, you dont currently fit the Poser Criteria.

The Poser criteria is listed here: http://www.mult-sclerosis.org/Posercriteria.html

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98474 tn?1240105274
Thank you for your comments on my case. The three lumbar punctures that I have had all show oligoclonal bands (12) in my spinal fluid not found in my blood serum. I am due to have another MRI number 5. The doctor also wants to repeat the lumbar puncture. I was waiting until my dad passed away to get in the middle of this again. Since my symptoms have gotten worse..especially leg weakness and swallowing problems, I can't wait too long to start taking meds if I am going to try to keep this disease from getting worse. I have had several MRI's of spinal and cervical to see if there are leisons there and they were neg. Evoked potentials were visual and they were neg too. My legs just keep getting weaker and walking/standing is getting harder and harder.
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Avatar universal
Make sure your doc has discounted all other explanations besides MS - especially since you don't match the usual established criteria for MS at the moment.

Look here at the bottom of this page: http://en.wikipedia.org/wiki/Oligoclonal_band

I'm sure there are many other differentials too.

I'm very sympathetic - getting worse and at the same time stuck waiting for some kind of diagnosis - I'm in a similar situation myself - but you need to make sure that you are not focussing on a single condition - waiting for that to be diagnosed, when your problem may be something else completely.

It may even be something much more treatable than MS.

Make sure you're exploring all other possibilities with your Doc.
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Avatar universal

Thanks for writing in.
MS is a very difficult disease to diagnose since its symptoms can be mimicked by so many other diseases. However in your case you have positive neurological symptoms along with positive CSF findings which are very suggestive of CSF. It is very difficult to tell without a clinical exam.
I would suggest you to weigh your options and then decide. Please remember early treatment has benefited patients with MS.
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147426 tn?1317265632
I have to say that you have gotten some very good advice here.  I also disagree of the need for a positive MRI in the diagnosis of MS - at least with the state of the current art of MRI technology.

j_s_w  - You have done your reading well.  It is rare to see a member of the forum here with such a clear insight into what is really known about MS.

The diagnosis of MS does not require that an MRI be positive for lesions.  The Criteria used for the diagnosis currently is the McDonald Criteria, revised in 2005.  The Poser Criteria were replaced in 2001 and revised in 2005 by the McDonald Criteria, which kept most of the Poser guidelines, but added ways in which the MRI data could be used to supplement information that is lacking in the history and physical.  It also supplied new guidelines for the diagnosis of Primary Progressive MS.  

If you read the McDonald Criteria you will see that there are 3 main requirements to diagnose MS.  If these three are fulfilled, no MRI is necessary, but it is essentially always done.  The requirements are these:

1)  2 separate attacks of symptoms that suggest demyelination.  These two attacks must be separate from each other.

2) There must be two or more "physical lesions" on the neurological exam.  This is evidence that damage has occurred in the central nervous system in at least two places.  Examples of this kind of damage would be pallor of the optic nerve suggesting optic neuritis, or hyperactive tendon reflexes indicating a lesion in the spinal cord. There are others.  

If these two criteria are met, then a smart and confident neurologist can diagnose MS IF AND ONLY IF all other more reasonable causes of the patient's problems is excluded.  MS is, indeed, a diagnosis of exclusion.  But it is NOT primarily an MRI diagnosis.

Now, I would venture to say in the developed world, no one is diagnosed with MS without an MRI.  A negative MRI should not negate the clinical diagnosis if the three requirements have been met, but it usually does.  This is unfortunate, but many docs do not have the skill and confidence to make this decision.

I have read many dozens of studies looking at the outcome of people presenting with the suggestion of a first demylinating attack and looking back at people with definite diagnoses of MS.  A certain number of people who are shown to have MS, do present in the first years of their disease with a negative MRI.  That number averages out to be between 1 in 10 and  1 in 20.  This is very consistent.  I maintain that 1 in 20 does not indicate that it is rare.  This is sufficient, in my mind, to dictate that neurologists should keep their minds open when the patient's clinical picture suggests MS and the mimics have been excluded.

Review articles and newer articles bear this out.  This number of 5% is also quoted on the National MS Society website.

How can the MRI be negative?  Because an MRI only shows what it can show - given its strength and resolution.  Many lesions are obvious on exam, but no corresponding lesion is seen.  In a patient with pathologically hyperactive reflexes, does no visible spinal cord MRI lesion mean there is NO damage in the cord?  Of course not.  It may just not be visible.

The 3T machines are leagues better than the earlier .25T, 1.0T, or 1.5T machines, but they are still being bested by the newer, more powerful 7T machines.  The increased lesion-yield of the 7T is not huge, but it is definitely there.

Other lesions than the T2 Hyperintensities are pertinent also.  Has the radiology report missed subtle atrophy of the brain or cord?  Are there T1 "black holes" present?  Is the technique good enough to visualize the often-extensive (but difficult to see) gray matter lesions seen as hypointense on the T2 images?  

I was pleased to see that Dr. Noorpur did not state that MS is impossible in Flowerfloosey's casy.  He would want to see whether her neuro exam showed any findings characteristic of MS and, I suspect, he would take a very thorough history of her symptoms.  MS still is a Clinical Diagnosis, even though there are ongoing efforts to supplant clinical assessment with the MRI.

Dr. Noopur's advice that early treatment has been shown to be more beneficial than later treatment is well placed.  There is a difference between making the "definite" diagnosis and making the appropriate decision to treat with a disease modifying drug.  In people who have a high likelihood of having MS or of being likely to develop full-blown disease in the future, most experts in the field would recommend beginning an MS med.

What spurred my interest in this topic?  I am a physician with MS whose diagnosis was delayed years by a neurologist who would not look beyond my relatively normal (1 T2 lesion) brain MRI and whose spine full of lesions was missed by the inadequate imaging power of 1.5T MRIs  They finally showed when a second neurologist ordered a 3T exam.  My diagnosis was clear from my history and physical, but the MRI-fixation of the doctor kept me from treatment.  So, my stance here was initiated by my personal experience, but my information is from a long, hard look at the medical literature.

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674737 tn?1226539884
Are your symptoms constant with no relief? I know from speaking to others on an ms forum and from researching in my search for answers that the progressive form of MS does not normally present with white spots. In people with this form there MRI is usually normal and it is in the lumbar puncture that it sometimes shows the elevated proteins. This type is the most rare form of MS and the most difficult to diagnose, many people wait years for a diagnosis which is frustrating to say the least. Not as many doctors come across this type as it is not as common so are not knowledgeable and don't recognize this form. Ask to see an neuro who specializes In MS. From what I have read and been told myself from doctors is that MS is still for the most part not that treatable and is treating the symptoms. There are drugs they say may slightly slow but eventually it will take its course. You are talking to a person who is very skeptical of the pharmaceuticals as there is so much money to be made...more money than in finding a cure. There is a PhD chemist that lives in a city very close to me who reversed his sons MS through strict diet and vitamin supplements. All of the info is on the site www.direct-ms.org. It is amazing if you read all of the people that have reduced symptoms and many cured. This man has nothing to gain he does not sell anything, he just did a tonne of research and his son has been now MS free for around ten years but still is very strict about the diet. It is very interesting. He was raising money to do clinical trials and I'm not sure if this has been done yet. Anyways check it out. All the best M
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Avatar universal
I'm the sort of person who, when I research something, I go quite in-depth.

And since I'm having quite a lot of problems/symptoms right now... and not having any luck getting a diagnosis... possible causes of my symptoms is a current research topic... at least so that I can ask the right questions...

I don't want to even attempt to self-diagnose (it never works - you either think too negative, too positive or constantly question yourself if you are thinking one of the above) - I do want to know enough though so that I can ask intelligent questions, and make sure that I have the right tests to discount as many possible causes as possible.

I can sympathize in the problems finding the right Doctor - I'm currently in that predicament - all my current neurologist has given me is effectively that he's stumped - it's not one of the things he specialises in, but that he thinks I need to see someone with "more of a specialty in the central nervous system" - apparently although he's a neurologist he has a specialty in nerve + muscle type problems... and has tested for all the things he normally treats for, with no luck... while it's good to discount a lot of things, it can't help but feel like a waste of time, during which I'm just getting worse...

So now I have to try to find the right Doctor - "more of a CNS neurologist" - which is not helpful really - because every neurologist claims to be a CNS specialist until you find out what their subspecialty is... those that do list it, list in terms of conditions treated...

Right now I'm in the process of drawing up all the possible causes of my symptoms, crossing out the ones that have already been discounted, and then trying to find a doc that specialises in as many of the remaining list as possible, or at least that lists procedures performed that are on the list used to diagnose the list - at least if it turns up nothing the list of possibilities get shorter... just hope it doesnt take too long....
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98474 tn?1240105274
Thank you all for your imput. It so helps to have company in this mess. When I first starting having the symptoms, I kept telling my PC and she kept telling me it was the fibromyalgia.I went to a new PC and he told me he was concerned about MS and did a brain scan. That was neg. Finally, I broke out in tears when I was in church and asked another PC doc that goes to my church.She sent me to this neuro that I like the best of any of the others. She told me that I had a lot of clinical sx  and a positive test for MS and wanted me to go to a big teaching MS center in San Francisco. She was so easy to talk to and so helpful with sx.  When I went there, I took along a paper with all of my sx.
He was so full of himself and didn't want me to talk..he wanted to ask the questions so  I never was able to address the sx that brought me there in the first place. I had already had the lumbar puncture that was positive with 8 oligoclonal bands in csf only. He told me that he thought the lab had made an error (I already had in hand a neg MRI) He told me it was most unlikely that I had ms and sent me to have another lp. When that was completed, I had 12 bands in csf only. I again had another brain scan that was neg. He did more blood tests including a acth test.In the meantime, he sent me home with a large dose of methotrexate along with xanax to take along with it if it made me crazy. That day after filling the rx, while I was still in the area, he called me on my cell phone and told me he didn't want me to take it. He had taken my case to their lunch meeting and so changed him mind.

I had had a spinal block due to back pain around the time that the blood was drawn for the acth test. It showed an abnormality. They did two 24 hour urine tests and another stim test twice and put me on Cortif. I was told I would feel much better and that I would be on it for the rest of my life. I didn't feel better and so the doc kept upping the dose with no results. Soon after that I began to have chronic sinus infections. After several doses of antibiotics, seeing a sinus specialist, They cultured it and I had a pseudomonas aeroginosa  infection. They told me it might never go away. Finally I went in for Total hip replacement and two days before the surgery, I got another sinus infection and together with being on cortef, the doctors decided I was not a good candidate for the surgery at that time. I decided to get a second opinion in another town, and the Endocrinolgist told me almost immediately after reading my history that she thought that my abnormal test results were most certainly from the steroid injection. She weaned me off the cortef.

After all of this I went back to the MS center as UCSF. I saw the same doc again, and he made this big point that he wanted another spinal tap and he wanted the sample sent to HIS lab because it was better. So..I had another one and when the lab at my local hospital called to get instructions on where to send it, it turned out to be the same lab that my local hospital used for this test. I was so ticked! It showed 12 bands in the csf only.

Six months later I asked for a different doctor , and was given a ms doc that specialised in Optical prob in ms. I had already had all the eye tests that were neg. They told me each of the doctors there saw patients in spite of their speciality. Very Frustrating! He looked in my eyes and told me he didn't see ms. So on my way I went.

In the meantime, I continued to have tremors when I get tired. Numbness and tingeling in extremities, urinary urgency, extreme heat intolerance, body core temp problems, sinus infections, fatique, weakness in legs and arms that is fatiquable, trouble standing for any length. Swallowing problems related to poor muscle coordination.

I also had a heart workup and the ct angiogophy showed blockage. They did an angiogram and found it to me very minimal. Thank God. I am still in denial about this prob as I have too much on my plate!

Fast forward...I hated the drive to the neuro (I live in a small foothill town near the high sierra) so made an appt with one closer to my home.

He told me that I maybe should be on meds but he wanted me to be tested again. He has ordered yet ANOTHER spinal tap an brain scan. I have put it off due to having my hip replaced finally and then my dad who was sick and passed away. Now it is the holidays and I am too weary after all that has gone on..surgery three months ago and pops passing away.I am going to wait until after Christmas. I have to drive one and a half hour to this neuro which is closer than the one I really like. I know that my original neuro would be flabbergasted at them wanting to do another lp. She was livid that UCSF made me have two more!

I also have had evoked potentials visual done and they were normal. I do show fatiquable weakness in one leg. I suspect it would be worse now as it is worse.

Thank you for reading my complete history. I thought I would write this out in case you have any advice after reading the whole thing. Sorry it is so long!

Hugs to all and hoping you are having a good day!

Thank you all for responding!
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