What next?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

What next?

Postby okachobii » Sun Jul 30, 2017 8:35 am

My story may be familiar to many. I started having some neurological symptoms; numbness in both hands, legs and feet. It extended up into the groin in mornings. When not numb, I had buzzing in my feet. I felt clumsy and spilled coffee a lot. I had muscle twitches and whole body electrical sensations. My mind felt foggy, with my short term memory suffering, and I had several occasions of my digestive system backing up and my abdomen swelling- like the nerves were asleep there. My vision was blurred at times and I had trouble where 1 eye would act up and lose vision momentarily as something grey blocked the vision for a second or 2. I started experience shooting pains in my shins and a burning sensations around the sides of my legs- like a sunburn. I have pulsatile tinnitus and and occasionally have some minor swallowing issues. And then I had a few dizzy spells that almost left me on the floor at work.

So I finally saw a GP who did a ton of blood tests to rule out other things and then recommended seeing a neurologist. My wife told me I was crazy...said it was anxiety related, but I felt I needed to try to get some answers.

An EMG turned up nothing so they ordered an MRI of my cervical spine w/o contrast. The radiologist reported that there was a hazy area, but could not rule out artifacts. He said that there should be a quick followup MRI done. I saw it, and it didn't look like an artifact to me since similar changes (dark on 1 scan, hazy on another) were visible in the other types of scans. So I went to a specialist neurologist at a teaching hospital to do more investigation. He didn't do a follow-up MRI of my cervical spine as the radiologist advised- instead he did a brain MRI, which came back negative for any lesions. He said the MRI I had done before was very bad quality. He then did a lumbar puncture, which showed protein and oligoclonal banding in the fluid and blood serum (multiple restriction bands) and seemed to conclude that MS wasn't the caused based on that result. So he then ran an MRA of the brain to look for issues with blood flow and found nothing. Then he did a Thoracic MRI and it turned up a ruptured disc, some protruding discs, and a fused vertebrae which he said were also not the cause of my symptoms. He then FINALLY redid the Cervical MRI- by this time around a year had passed. It showed no lesions on the cervical spine. He also ran some blood tests looking for indicators of cancer and encephalitis, and I came back VGKC positive (Voltage Gated Potassium Channel antigen) but he said the result was within the margin of error and some subsequent test suggested that some other antigen was missing which made the VGKC+ result unimportant. From the Thoracic MRI there was indication of a unidentified mass of some sort, so they ran an ultrasound. The ultrasound couldn't find it, so they did a CT Scan. The CT Scan revealed that I had a horseshoe kidney (1 big kidney connected at the bottom) and a colon interposition with my pancreas that explained the mass seen in the Thoracic MRI.

So after $12,000+ spent on diagnostics, the neurologist tells me I'm a medical mystery and sends me on my way. These symptoms still come and go in severity with no diagnosis or indication of what may be the cause. I just try to ignore them now, but some are hard to ignore like the digestive issues and the pain and tightness around my rib cage.

At this point- I don't really know what to do next. I'm tentatively planning to continue to ignore it all unless it worsens in severity. It's been relatively mild symptoms for the past 2 months compared to some of the numbness over the past year. I feel satisfied in the tests that were run, with the exception of the cervical MRI that was not run quickly enough after the first that indicated a hazy spot or imaging problem. That one bothers me because I've read that lesions can disappear from the MRI in a year. So I just don't understand why he didn't redo it if he thought the imaging was bad. The last thing he said to me was "I'm not sure why the hazy spot was there on the first MRI- it wasn't a good MRI though". But again- he didn't have it run again with contrast until much much later.

At this point, I'm not planning to seek any more doctors unless there is significant worsening, but I'd like to hear from others as to whether anyone had a similar experience and then went on later to find out MS was the cause of their issues. I have all the imaging and considered going to someone for a second opinion, but my wife is not supportive. We've spent a lot on this, and she still thinks its psychological and I'm getting to the point where I wonder if she isn't right. :-(
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Re: What next?

Postby jimmylegs » Sun Jul 30, 2017 11:25 am

hi and welcome :)

i don't see a referral to a dietitian among the 12K of inconclusive diagnostic efforts. do you have copies of results for all the tests that were run? specifically tests looking at nutrient status?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: What next?

Postby Snoopy » Sun Jul 30, 2017 11:34 am

He then did a lumbar puncture, which showed protein and oligoclonal banding in the fluid and blood serum (multiple restriction bands) and seemed to conclude that MS wasn't the caused based on that result.


o-bands in fluid can be possible in MS, but if it's in both fluid and blood it's not diagnostic of MS (per the McDonald Criteria).

Thoracic MRI and it turned up a ruptured disc, some protruding discs, and a fused vertebrae which he said were also not the cause of my symptoms


You should take the Thoracic MRIs/report to a Neurosurgeon to evaluate. Ruptured/protruding discs can cause Neurological symptoms and might account for some of your symptoms. Vision problems should be evaluated an Ophthalmologist.

Having all over body wide symptoms isn't indicative of MS.

If you deal with anxiety it would be a good idea to see your Primary Care Physician or a Psychiatrist for medication. Left untreated mental health problems can cause body wide physical symptoms.

The diagnosis of MS relies heavily on MRI evidence (McDonald Criteria), all of your MRIs are clear (no lesions). Even if your new Neurologist didn't redo a MRI in a more timely manner it would not make a difference, not all lesions will disappear when having MS. Those of us with MS will always have some lesions.
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Re: What next?

Postby jimmylegs » Sun Jul 30, 2017 1:06 pm

my lifelong chronic and untreated anxiety evaporated as a side benefit of correcting magnesium deficit for other reasons (specifically my difficulties with swallowing/breathing). the anti-anxiety effect was a very welcome surprise.

the degree to which the academic literature supports the use of magnesium as an anti-anxiety and antidepressant agent continues to accrue, eg:

Double-blind, randomized crossover study of intravenous infusion of magnesium sulfate versus 5% dextrose on depressive symptoms in adults with treatment-resistant depression (Dec 2016)
http://onlinelibrary.wiley.com/doi/10.1 ... 12480/full
"The association between changes in serum magnesium and the Patient Health Questionnaire-9 supports the idea that magnesium sulfate may be used to address treatment-resistant depression, an ongoing medical challenge."

The Effects of Magnesium Supplementation on Subjective Anxiety and Stress—A Systematic Review (Apr 2017)
http://www.mdpi.com/2072-6643/9/5/429/htm
"Conclusions: Existing evidence is suggestive of a beneficial effect of Mg on subjective anxiety in anxiety vulnerable samples. However, the quality of the existing evidence is poor. Well-designed randomised controlled trials are required to further confirm the efficacy of Mg supplementation."

Role of magnesium supplementation in the treatment of depression: A randomized clinical trial (June 2017)
http://journals.plos.org/plosone/articl ... ne.0180067
"Consumption of magnesium chloride for 6 weeks resulted in a clinically significant net improvement in PHQ-9 scores of -6.0 points (CI -7.9, -4.2; P<0.001) and net improvement in Generalized Anxiety Disorders-7 scores of -4.5 points (CI -6.6, -2.4; P<0.001). Average adherence was 83% by pill count. The supplements were well tolerated and 61% of participants reported they would use magnesium in the future. Similar effects were observed regardless of age, gender, baseline severity of depression, baseline magnesium level, or use of antidepressant treatments. Effects were observed within two weeks. Magnesium is effective for mild-to-moderate depression in adults. It works quickly and is well tolerated without the need for close monitoring for toxicity."
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: What next?

Postby okachobii » Sun Jul 30, 2017 1:18 pm

I did not see a dietician. They tested B vitamins and D vitamins in the blood panels. They also did lupus and lyme tests as well as Glucose an A1C....liver tests, kidney function..etc. I had at least 5 separate visits to draw blood before all was said and done.

One set of tests at the beginning that were not normal, but dismissed as possibly caused by an unidentified infection were a moderately elevated (over normal) hemoglobin and hematocrit. What I read recently as I reviewed my own labs was that this could be indicative of polycythemia vera and one of the symptoms of that is numbness (and an enlarged spleen). But again, no indication from any doctor that this was a problem and I understand it is quite rare anyway. It was dismissed as being elevated from a mysterious infection that I had not complained about. Presumably inflammation tests that were run would have caught an infection and there would be elevated WBC too...but I'm not a doctor and had to depend on them. If they tested hemoglobin and hematocrit in later tests, I never saw the results.

Those of us with MS will always have some lesions.


I've read the opposite here on lesions- that there were all severities of RRMS, with some people have 1 attack in their lifetime, and many people had symptoms for years before catching their lesions on MRI. I've also read in various FAQs that the lesions can and do heal during remittance in RRMS and may not appear in subsequent MRIs. The first MRI was not clear and showed what the radiologist suspect as a lesion, but indicated needed a fast follow on image to confirm, which simply did not happen. His comments indicated that he could not guarantee it was not an imaging artifact without another scan.

Your response strikes me as odd, because I've read numerous accounts of people spending years trying to get a diagnosis for their problems and some said they never got the lesions on the first sets of MRIs only catching them much later. It would seem to be related to the severity of the disease as to whether people have persistent lesions or 1 or 2 attacks and never again. I got that indication from the MS Society literature as well as personal accounts on various forums.

You should take the Thoracic MRIs/report to a Neurosurgeon to evaluate.


They offered a surgical consult, but the neurologist said in his opinion the rupture was not large enough and in the wrong area to be causing the problems and that statistics show that in most cases they heal with or without surgery with surgery making little difference. He recommended against surgery. Since I had spent a significant amount already and my insurance deductible was reset, I decided to wait to see if it become more of a problem or if it heals on its own. But the neurologist indicated he was fairly certain it was not the cause of my other problems and said most thoracic ruptures have no symptoms at all.

I also did see an opthamologist and she referred me back to my neurologist who would then recommend a neuro-opthamologist. I spoke with him about it. He was concerned, but I have a long history of ocular migraines and he felt that it could be related to those. I have had ocular migraines and double vision since, but not the grey out.

If you deal with anxiety it would be a good idea to see your Primary Care Physician or a Psychiatrist for medication


All of us deal with some level of anxiety, but I don't have panic attacks and have given presentations and performances to 100's on stage without problem. I tend to deal with it ok, but it's definitely made me wonder if the burning and numbness, muscle twitches, and waking with numbness could be caused by stress that I don't perceive. My personal belief is that it has nothing to do with anxiety or stress...the periods of numbness have occurred during long holidays where I'm fully relaxed and have no cause for either. And during some of the most stressful times, the severity has been low. When there is an episode, I know it's going on and it last for a 2-3 weeks and usually gets better. I can't associated it with stressful events. So I hesitate to get medication for something that otherwise doesn't seem to be a problem. Also, I don't know how stress creates elevated levels of protein and oligoclonal bands in your CSF (even if they are in the serum). Not saying that's MS, just that apparently having the bands in both is neither diagnostic nor exclusionary of MS.
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Re: What next?

Postby Zyklon » Sun Jul 30, 2017 2:31 pm

Can you please share your B12 result?
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Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
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Re: What next?

Postby okachobii » Sun Jul 30, 2017 3:04 pm

Zyklon wrote:Can you please share your B12 result?


622 pg/mL(normal range indicated is 200-1100)
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Re: What next?

Postby jimmylegs » Sun Jul 30, 2017 3:09 pm

that's a decent number. 'normal' is deceptive. i personally aim for at least 500 pmol/l where serum b12 is concerned (works out to 677 pg/ml)
others aim for at least 600 pg/mL.

and the serum 25(OH)vitaminD iima?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: What next?

Postby Zyklon » Sun Jul 30, 2017 3:58 pm

No B12 deficiency, no blood sugar nerve damage, multiple systems involved and MRI results without lesions? With such symptoms, if it is MS you must have multiple lesions in your brain(vision), spine(numbness in legs), neck(swallowing) and any decent 1.5 Tesla MR machine can easily detect it. My advice is get all MRIs with a 3 Tesla machine and with contrast. I believe something is wrong with your MRI results. No chance for complete disappearance of lesions in your case.

BTW how old are you?
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: What next?

Postby Snoopy » Sun Jul 30, 2017 5:05 pm

What you are reading may be older information about diagnosing MS. MS has been around since at least the 1400s. There was a time when testing for MS was the "bath test" where the patient would be put in a warm/hot tub of water and if the patient was unable to stand or walk they were diagnosed with MS. Thank goodness for new technology. Since MS was being diagnosed before the MRI was around lesions were not a consideration. As more is learned about the disease and technology has improved the criteria for the diagnosis of this disease has evolved.

It might be a good idea to learn about the diagnostic criteria of a disease you believe you have --
http://onlinelibrary.wiley.com/doi/10.1 ... 22366/full

Your response strikes me as odd, because I've read numerous accounts of people spending years trying to get a diagnosis for their problems and some said they never got the lesions on the first sets of MRIs only catching them much later. It would seem to be related to the severity of the disease as to whether people have persistent lesions or 1 or 2 attacks and never again. I got that indication from the MS Society literature as well as personal accounts on various forums.


I was diagnosed under a different criteria many years ago. At that time my MRIs were clear as well as all other testing except the LP. My LP was positive for o-bands and my Neurological exam/evaluation was abnormal. I was in the middle of a severe exacerbation during the entire diagnostic process. At the time of my diagnosis the MRI was relatively new and we only had 2 MRI machines in the entire state.

The diagnostic criteria is quite clear about what it takes to receive a diagnosis of MS.

Ruptured/bulging discs aren't within the specialty of a Neurologist, that's why I suggested seeing a Neurosurgeon who's specialty bulging/ruptured discs is within their specialty. Mechanical back problems can cause numbness, weakness, abnormal sensations and even paralysis.

I don't know how stress creates elevated levels of protein and oligoclonal bands in your CSF (even if they are in the serum). Not saying that's MS, just that apparently having the bands in both is neither diagnostic nor exclusionary of MS.


Stress would not cause LP results to show something or not. Did your Neurologist explain what the LP results might mean?

If there are bands in both fluid and serum it does exclude MS, per the McDonald Criteria:
What is Positive CSF?
Oligoclonal IgG bands in CSF(and not serum) or elevated IgG index
https://www.va.gov/MS/articles/2010_McD ... evised.pdf



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Re: What next?

Postby okachobii » Tue Aug 01, 2017 3:02 pm

Zyklon wrote:If there are bands in both fluid and serum it does exclude MS, per the McDonald Criteria


I think you misunderstand what "not positive" means in the context of diagnostic criteria. It's only inclusive, not exclusive.

A) Oligoclonal bands can be in your CSF fluid if you have an immune reaction in your spine.
B) Oligoclonal bands can be in your CSF blood if you have an immune reaction in your body.
C) Oligoclonal bands can be in both because of either A or B or BOTH. It does not exclude A if you have B, but it cannot confirm diagnosis of MS.
(oligoclonal bands can also be in both through contamination- "dirty tap" or bleeding into the CSF)

Basically, if its in both, you can't determine which is the source so you cannot use it to diagnose the condition.

I'm familiar with the McDonald Criteria, but again it's to diagnose a positive diagnosis, not to produce a differential diagnosis or to exclude diagnosis. If you go have an MRI and have a lesion, and then go back and it's gone, McDonald criteria indicates that as non-positive, but that does exclude MS. You may return and another lesion is seen in a year or 2, then the criteria would be positive. Likewise, having immune reactions in your blood and spinal fluid does not exclude the possibility that MS was the source of oligoclonal banding in your CSF.

I appreciate the advice, I just worry if you're advising people in the forum that McDonald criteria definitively excludes MS. Your negative until you're not. That's how it works.

That said, I'm primarily looking for advice from personal experiences. I followed the doctor's advice, spent a lot of money following it, and still don't have a good explanation. I presume if its an immune disease of some sort, it will continue to get worse or flare up and I'll end up back at the doctor. But I've read plenty of recent accounts of people who spent several years or had to see other doctors before they got some kind of explanation of their problems. I don't think that's uncommon.

My D2 was 37 pg/mL
My D3 was also 37 pg/mL

And I'm 45.
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Re: What next?

Postby jimmylegs » Tue Aug 01, 2017 5:52 pm

d3 level could definitely stand to be above 45. if you decide to supplement with d3, consider including a high quality magnesium product such as magnesium glycinate. a high quality multivit/min wouldn't go amiss either. and fish oil for its antiinflammatory effects. :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: What next?

Postby Zyklon » Tue Aug 01, 2017 6:10 pm

Please consider there may be test errors. Blood tests, MRI, everything. Mistakes do happen. A human error and you may have someone elses results. A bad batch of test kit and your B12 result can be wrong.

A 3 tesla MRI machine will give more detailed results. Your symptoms are very very common for MS. When I read your first message, I feel like something is wrong with MRI tests. If you have any doubts, please get tested again.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: What next?

Postby Snoopy » Wed Aug 02, 2017 6:24 am

The Lumbar Puncture, if positive, can help support a diagnosis of MS. A positive Lumbar Puncture in MS means o-bands in fluid and not in serum. If o-bands are in both fluid and serum the results do not support a diagnosis of MS.

You have symptoms but you do not have signs of MS.

Symptoms are subjective (those things you feel/experience), signs are objective (testing, Neurological exam/evaluation).

There is no single test, by it's self, that can give a definitive diagnosis of MS and there is no symptom(s) exclusive to MS.
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