Conversion of Clinically Isolated Syndrome to CDMS

[ebrownkirkland]

Well, my husband had a second MRI last Thursday, apparently because the neurologist wanted to rule out a tumor (she was most concerned about the high protein level found in his CSF, which is indicative of inflammation in the brain and can be indicative of a tumor). Thankfully we didn't find out that was why she wanted the follow-up MRI until we showed up to his follow-up on Friday. Anyway, during his follow-up on Friday, the doctor said that his MRI is not indicative of a tumor but that it looks exactly like MS (she said he had what is called "Dawson's Fingers"--with three lesions). However, she diagnosed him with "clinically isolated syndrome" because his igG index was normal and he only had one o-band. Even so, she told him to make an appointment with an MS specialist as soon as possible to see what the specialist would say (she wants the specialist to decide whether to treat or not, and whether or not to label it CDMS or CIS). So, he is going to see a specialist at GW University Hospital on Wednesday (I can'be believe he was able to get an appointment that soon). She wanted him to see the specialist as soon as possible--she did not want him to wait six months to have another MRI done.

Anyone had any experience with CIS and conversion to CDMS (clinically definite MS)?

[Snoopy]

Anyone had any experience with CIS and conversion to CDMS (clinically definite MS)?

I don't have experience with conversion from CIS to CDMS as my diagnosis was fairly quick. I do know that MS is the only thing that causes Dawson's Fingers. It was a good call for your Neurologist to refer your husband over to a MS Specialist. Hang on, this ride might go very quickly....take care.

[jimmylegs]

if it's CIS that is good news. i don't think clinically isolated precludes dawson fingers.

Periventricular Lesions Help Differentiate Neuromyelitis Optica Spectrum Disorders from Multiple Sclerosis
https://www.hindawi.com/journals/msi/2014/986923/
Objective. To compare periventricular lesions in multiple sclerosis (MS) and neuromyelitis optica spectrum disorders (NMOsd). Materials and Methods. Sagittal and axial fluid attenuated inversion recovery (FLAIR) sequences of 20 NMOsd and 40 group frequency-matched MS patients were evaluated by two neuroradiologists. On axial FLAIR, periventricular area was characterized as free of lesions/smooth-bordered (“type A”) or jagged-bordered (“type B”) pattern. On sagittal FLAIR, the images were evaluated for presence of “Dawson’s fingers.” Results. Type A pattern was observed in 80% of NMOsd patients by Reader 1 and 85% by Reader 2 but only in 5% MS patients by either Reader. Type B was seen in 15% NMOsd patients by Reader 1 and 20% by Reader 2 and in 95% MS patients by either Reader. Dawson’s fingers were observed in no NMOsd patients by Reader 1 and 5% by Reader 2. In MS, Dawson’s fingers were seen in 92.5% patients by Reader 1 and 77.5% by Reader 2. The differences in periventricular patterns and Dawson’s finger detection between NMOsd and MS were highly significant (). Conclusions. Dawson’s fingers and “jagged-bordered” periventricular hyperintensities are typical of MS and almost never seen in NMOsd, which suggests a practical method for differentiating the two diseases.

Modification of MRI criteria for multiple sclerosis in patients with clinically isolated syndromes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117493/
Background
The McDonald criteria include MRI evidence for dissemination in space and dissemination in time for the diagnosis of multiple sclerosis in young adult patients who present with clinically isolated syndromes (CIS) typical of the disease. Although a major advance, the criteria have limited sensitivity for making an early diagnosis.
Objective
To compare the performance of McDonald criteria and modified McDonald criteria for dissemination in space and time for assessing the development of clinically definite multiple sclerosis.
Methods
McDonald criteria were modified using the combination of a less stringent definition for dissemination in space and allowing a new T2 lesion per se after three months as evidence for dissemination in time. Modified and McDonald criteria were applied in 90 CIS patients at baseline and at three month follow up scans.
Results
Both criteria were highly specific (>90%) but the modified criteria were more sensitive (77% v 46%) and more accurate (86% v 73%).
Conclusions
These modified criteria should be evaluated in other CIS cohorts.

i must say that last abstract creeps me out. i'm much more interested in figuring out how to get away from the status that resulted in a CIS situation, than changing the rules so that ms can be diagnosed more efficiently.

[lyndacarol]

Well, my husband had a second MRI last Thursday, apparently because the neurologist wanted to rule out a tumor (she was most concerned about the high protein level found in his CSF, which is indicative of inflammation in the brain and can be indicative of a tumor). Thankfully we didn't find out that was why she wanted the follow-up MRI until we showed up to his follow-up on Friday. Anyway, during his follow-up on Friday, the doctor said that his MRI is not indicative of a tumor but that it looks exactly like MS (she said he had what is called "Dawson's Fingers"--with three lesions). However, she diagnosed him with "clinically isolated syndrome" because his igG index was normal and he only had one o-band. Even so, she told him to make an appointment with an MS specialist as soon as possible to see what the specialist would say (she wants the specialist to decide whether to treat or not, and whether or not to label it CDMS or CIS). So, he is going to see a specialist at GW University Hospital on Wednesday (I can'be believe he was able to get an appointment that soon). She wanted him to see the specialist as soon as possible--she did not want him to wait six months to have another MRI done.

Anyone had any experience with CIS and conversion to CDMS (clinically definite MS)?

Vitamin D in clinically isolated syndrome: evidence for possible neural protection. (2016)
EM Mowry, D Pelletier, Z Gao, MD Howell, SS Zamvil, E Waubant
http://www.ncbi.nlm.nih.gov/pubmed/26518224

CONCLUSIONS: Vitamin D status may impact neurodegeneration after CIS, although these results should be replicated in a second study. If confirmed in clinical trials, vitamin D supplementation may reduce long-term disability.


If your husband has not had the vitamin D blood test called "25-hydroxy D", please have him see his doctor and ask for this test.

[ebrownkirkland]

Thanks, Snoopy, Lynda, and Jimmy. Greatly appreciate it. We see the MS specialist tomorrow morning so hopefully we will have more answers then. As for Vitamin D, he has upped his intake and is taking a daily multivitamin so hopefully that will help.

Snoopy, I have read the same thing about Dawson's Fingers. We are just hoping to get some sort of a definitive diagnosis.

Jimmy, now we just need to be sure, if this is CIS and not CDMS, that it doesn't develop into CDMS.

Anyone know of anyone with CIS who is receiving disease-modifying drugs for CDMS, even though they haven't been diagnosed with CDMS? Just want to be sure this doesn't become CDMS if the doctor determines it is CIS.

[Snoopy]

Anyone know of anyone with CIS who is receiving disease-modifying drugs for CDMS, even though they haven't been diagnosed with CDMS? Just want to be sure this doesn't become CDMS if the doctor determines it is CIS.

The treatments for MS (Disease Modifying Drugs/Disease Modifying Therapy) can be prescribed for CIS. However, not all Neurologists will prescribe unless MS is a definite diagnosis. If the MS specialist determines your husband has CIS of MS he may recommend the use of a DMD/DMT, if he doesn't your husband has the right to voice is desire to use one of them.

[ebrownkirkland]

Thanks for the insight, Snoopy. We will definitely voice our opinion tomorrow. From what I understand, and according to the neurologist who suggested he seek an opinion from a specialist, every neurologist will have a different POV on whether to treat for CIS. I guess we just wait and see what happens.

[lyndacarol]

As for Vitamin D, he has upped his intake and is taking a daily multivitamin so hopefully that will help.

The amount of vitamin D absorbed into the blood from the same intake varies greatly from person to person. It is not the dose of vitamin D taken in that matters; it is only the serum level that can be achieved that matters. It is important to know your husband's serum level.


If your husband has not had the vitamin D blood test called "25-hydroxy D", please have him ask his doctor for this test.

[lyndacarol]

Also,

Multiple sclerosis patients have a diminished serologic response to vitamin D supplementation compared to healthy controls. (May 2016)
P Bhargava, et al.
https://www.ncbi.nlm.nih.gov/pubmed/26286698

Background: Vitamin D insufficiency is a risk factor for multiple sclerosis (MS), and patients do not always show the expected response to vitamin D supplementation.

Conclusions: Patients with MS had a lower increase in 25(OH)D levels with supplementation, even after accounting for putative confounders.

[jimmylegs]

[broken record] d3 dose response is linked to cofactors eg if you have low magnesium you'll have low d3 as well. you can cause issues with other nutrients if d3 is increased without *matching* cofactor increase [/broken record]

[ebrownkirkland]

Well, we just saw the MS specialist. The specialist called what he had "radiologically isolated syndrome." He said his symptom, which began about two months or so ago-- a splotch appearing in his visual field that comes and goes every couple of hours or so over the course of a couple of days -- is not necessarily indicative of optic neuritis. Therefore, he is being sent for a visual evoked potential test. If the results of that test come back abnormal, he will be diagnosed with MS and will have to schedule treatment for it. If the results of that test are normal then he will be monitored for changes and, in six months, will have to have another MRI. He did say that his MRI shows Dawson's Fingers, which can be a sign of MS, and that his MRI is "concerning." He added that the lesions seen on the MRI are not typical for migraine. If there is a new symptom that shows up between now and July (when the second MRI would be scheduled if his VEP test is normal) or if he has confirmed optic neuritis between now and July (dilated pupil, color desaturation, pain on eye movement, light sensitivity, loss of vision) that he would also be diagnosed with MS and would have to seek treatment.

I thought it was interesting that he does not have to have four o-bands to be diagnosed with MS. I had heard that a lot of doctors will not treat if the o-bands are not present, even though from what I've read 20% of individuals who have MS are negative for o-bands altogether (my husband has one o-band). He also noted that the high protein found in his CSF is nonspecific.

In addition to the VEP test, my husband is also being sent for more bloodword to rule out anything that would mimic MS.

Thanks, all, for listening. I greatly appreciate it.

[jimmylegs]

sounds good! if you are interested in being as preventative as possible, you can ask for a referral to a dietitian, and also for a requisition for a handful of other less common tests, to look at serum nutrient levels that are often low normal in ms patients vs mid or high normal in healthy controls. if the doc says no, there are a number of potential workaround options, depending where you are located.

[ebrownkirkland]

So, interesting result from some labs he had run a couple of weeks ago... The metabolic panel (liver, kidney, sugar, vitamin D, etc.) was normal. However, the test for connective tissue disorders that could cause changes in the white matter, was borderline + for lupus. But, as the doctor pointed out, lupus is usually associated with systemic symptoms which he didn't recall my husband mentioning. Even so, the doctor thinks it would be worthwhile to perform some alternative checks like a double-stranded ANA and some other systemic tests to confirm the original result. He added that the result of the VEP test "would be most helpful if (it's positive) because MS has a predilection for optic nerves."

My husband will have his VEP test tomorrow morning.

[jimmylegs]

interesting what was the 'normal' serum 25(OH)vitD3 result?
do you have any numbers on file for serum cobalamin (b12), serum magnesium, serum zinc, serum uric acid, any other ms 'usual suspects'?

related SLE study (women though)
Vitamin D levels in women with systemic lupus erythematosus and fibromyalgia.
http://www.jrheum.org/content/28/11/2535.short
RESULTS: In SLE patients mean 25(OH)-vitamin D was 46.5 nmol/l and mean 1,25(OH)2-vitamin D was 74.4 pmol/l. In FM patients these means were 51.5 nmol/l and 90.1 pmol/l, respectively.

i personally aim for at *least* 100 nmol/L serum vit d3. would never just dump plain old d3 onto a low d3 situation however - afaic, always must be done with proper attention to cofactors.

http://bit.ly/2kJmrM9
serum vit d3 recommended target: 50 ng/ml (125 nmol/L)
reference ranges:
Deficient: 0-40 ng/ml (0-100 nmol/l)
Sufficient: 40-80 ng/ml (100-200 nmol/l)
High Normal: 80-100 ng/ml (200-250 nmol/l)
Undesirable: > 100 ng/ml (> 250 nmol/l)
Toxic: > 150 ng/ml (> 375 nmol/l)

[ebrownkirkland]

Thanks for the information. We weren't given the actual lab results (I asked him to retrieve them from the hospital tomorrow)... All we were told was that all of his labs came back in the normal range except for the ANA test, which, as I mentioned, was borderline +. I do know that vitamin deficiencies can cause all kinds of crazy symptoms, though... My neurologist thought I had MS a few years ago until my B12 came back. Turns out I am SUPER anemic. I now get B12 shots regularly to avoid numbness and tingling in my hands and other neurological symptoms. I still have occasional bell's palsy, though, and nystagmus. I also have white matter abnormalities.