This Is MS Multiple Sclerosis Knowledge & Support Community

Hello. I just want to start by saying i appreciate everyone's time.

I am really confused and could really use any input. I have had several things going on with me, for the last several years, like vertigo, tingling, numbness. I always attributed these things to different possible causes and mainly went about my life. About 6 months ago i began complaining to my husband that my vision seemed to be getting much worse, suddenly. I also started worrying because i started to feel as if my mind was getting quite fuzzy and was having real trouble keeping a train of thought or finding words. We started joking that the kids were bringing on early dementia but mainly chalked it up to general flakiness from stress or exhaustion( Quietly, i became more worried because i could tell that this feeling was somehow different)

At some point, a couple of months ago, it seemed like all of the "symptoms" jumped on my at once and the vertigo began to cause imbalance and i stated falling. The slight ache i usually felt in my fingers now felt so painful that it hurt to carry a grocery bag. I could no longer see to thread a needle and my vision seemed to be "jerking" The final straw was when the backs of my thighs went into what felt like a contraction and it did not stop for a full day and a half. Suddenly, it became clear that all of these, seemingly separate things, must be related somehow. I scheduled an appt. In the mean time i googled and MS seemed to come up frequently.

My GP ran my vit d levels and a series of blood tests. Everything but the vit d came back normal. Vit d was low, as it usually is with me. (as an aside, my creatinine has run low for several years)
The dr put me on 50,000 IUs/ once a week for four weeks and referred me to a neuro.


I went to the soonest neuro appt i could find and it was a vry bad experience. Long story short, she did an exam and tried to suggest that some of the symptoms were anxiety, some were common causes and some were not even worthy of mention. My husband asked that she do an MRI. She ran one and i received a message from her nurse a few days later, saying she needed to speak with me in person. The message she related from the Neuro was something to the effect of...There are a few spots on my white matter. That this is not diagnostic of anything but can be seen in migraine disorders or MS. There are no acute spots and no spots to account for the troubling vertigo. (she had been unable to induce vertigo during her exam) Her nurse asked that i get a copy of a 7 year old MRI for her to use for comparison.

So, because of the difficulties with the visit, we have decided to schedule with a different neuro and plant to take the MRI report to him. Today, i got a call from my GP. My vitamin D levels have not budged a single point after the four weeks of 50,000 IUs and they are now placing me on the 50,000IUs twice a week.

Here is my question... what does it mean that there were no acute lesions? It the spots were caused by MS wouldn't they be ?active? (please forgive my terminology) Could non acute lesions cause the symptoms i've been dealing with? I appreciate any input. I am very confused and more than a little frustrated. Thank you.

Momof5, you can retrieve the private message I have sent you by clicking on "new messages" in the upper left-hand corner of this page.

hi mom, when your vit d3 won't move, it can be a very good idea to look at cofactors. in fact it sounds like it could be an urgent priority since the d3 will be scouring your system for cofactors that appear, on this very superficial internet surface, to be absent, and now the dose is doubled.
has the doc instructed you to take anything else with the d3? if not consider this as a short term therapeutic measure:
http://kirkmanlabs.com/ProductKirkman/1 ... llergenic/
always take some at the same time as your d3, and then take it again at another time of day.
in the longer term, try to ensure at least 300mg of magnesium from diet, and continue taking a mag pill whenever you take d3. may i ask what your levels have been so far? and do you happen to know how many mgs of magnesium you currently get from diet? if not here is a potentially useful resource:
http://www.whfoods.com/genpage.php?tnam ... #foodchart

Thank you lyndacarol and jimmylegs. When i finally get to spend any substantial time with a dr i will ask them about the things you've both suggested.

I wanted to show my MRI report comments to see if anyone can help me make any sense of it all. The first neuro, who was an awfully unpleasant woman, did a neuro exam and told me that the tingling was due to hyperventilation and that the vertigo (even though she could not induce it herself) was positional. She said that she believed the numbness in my hand was nerve damage and she said that the painful thigh contractions/spasm (it lasted around 36 hours) were just the pain that sometimes happens from exertion. The other symptoms, trouble with vision, some stabbing pain in my foot, frequent twitching and DEEP brain fog...she completely disregarded. My husband asked for an MRI and the dr said that she could order one but that she did not understand why we were "getting mad at" her. She said that my symptoms could not be explained by something like MS. We told her we were not getting mad at her because we don't know her but that we were confused by her suggestions, and that we felt unheard. She ordered the MRI.

The second neuro i saw said the lesions are age related. I am 42. He did an extremely brief, maybe 5 minutes, exam and did not ask me about any symptoms. I asked him why other people my age are not experiencing the types of symptoms that i am and he said that it was a good question. He said he wanted me to come back in a year to further determine if it is MS. I said wouldn't that ensure more possible damage, if it were ms, and he agreed that it could. I asked about LP and he said he doesn't like them, and rarely orders them, because of false pos negs and said he would do a 48 hr eeg and that he would order a LP.

I had the EEG results come back. They were normal. I have only had the CSF albium come back and it also was normal but as i understand it, that is to show a breech of the blood brain barrier, which my MRI contrast did not show. The other aspects of the LP are not back yet.


Here is the comment from the MRI report.

"There is no abnormal intraparenchymal or Leptomeningeal enhancement. There is no restricted diffucion to suggest and acute infarct. Susceptibility sensitive sequences demonstrate no evidence for intercranial blood byproducts. The ventricular system is of normal size and configuration. There are multiple round and ovoid hyperintense foci on T2-weighted and Flair images within the subcortical and periventricular white matter primarily in the bilateral frontal lobes. There is no mass effect. The sella amd suprasellar cisterns are normal. The craniovertebral junction is normal. The brainstem and cerebellum are unremarkable. Normal flow voids are noted in the major intracranial vessels and deral venous sinuses suggesting patency of these vessles. Mucous retention cyst or polyp is noted within right maxillary sinus.

Impression: Multiple hyperintense foci involving the subcortical and periventricular white matter on T2 weighted and Flair images are non-specific but can be seen with clinically questioned demyelinating disease. "

Basically what that MRI report says is that it could be MS or other demyelinating diseases but it doesn't have to be.

There is not enough damage or lesions for them to diagnose MS. The lesions could just be normal and because of age.

Thank you Youarethecure

What would typically come next? I know that i need to see what the LP results are but even if they come back positive, it doesn't necessarily mean it is MS right? Are spinal MRI's always necessary for a diagnosis?

I am having so much trouble with cognitive issues that i am quite concerned about leaving it to possible become worse. The rest of the symptoms, that i am dealing with, i can cope with but the thinking stuff is really becoming scary.

I am not 100 percent sure on your spinal tap question. I guess there can be false positives, or false negatives.

Spinal MRI's are not necessary for diagnosis. One can only have lesions and damage to the brain (or only the spine) and still be diagnosed with MS.

Nutrition and vitamins can help a lot with your symptoms. Jimmylegs and lyndacarol can help you in that respect if you want to look into nutrition.

Your doctor will probably want another MRI sometime down the road to see if anything new has occurred. If in fact new lesions show up then I am pretty sure it would be enough to diagnose.

Best wishes,

Chris

objection, false equivalency ;)

jimmylegs wrote:objection, false equivalency ;)

Sorry, not following.

doesn't matter did you ever get a chance to chat with your doc about possible interactions between magnesium and vit d3? (not that i would expect him or her to have much info on that - if they know their stuff where nutrition is concerned, and all about the problems associated with standard test interpretation, they'll be a very unusual doc!)

as an fyi, magnesium would probably be the tip of the iceberg. assuming you are truly a mom of 5, you could expect to have a pretty broad array of nutrient deficit issues to consider. here is link to a couple quick pages of potentially interesting reading: http://www.thisisms.com/forum/general-d ... 19575.html