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Two years ago I had some strange "episodes" I had some vision issues which I can best describe as kind of wavy vision with like a solid grey circle in my left eye. It was solid and I couldn't see through it and it was a mid grey colour. It happened a few times but never lasted long. I had pain in the very back of my eye with it. Naturally I ran straight to google and self diagnosed with ocular migraines and thought no more of it. Not that long after I woke up feeling odd. Just a bit out of sorts. The next thing I knew I woke up and I was on the bathroom floor and had vomited. I can't remember getting to the bathroom and was quite vague afterwards. Two weeks later it happened again. My company wanted to make sure I hadn't had a seizure so I had to have a brain MRI. The findings were as follows, (it's long so I've only included the final section.)


IMPRESSION:internal auditory canals and seventh and eighth nerve complexes are unremarkable.

The pituitary and pituitary sella and parasellar region and the orbits and contents and the adjacent

facial sinuses visualized are

This is a noncontrast study. There are a multiplicity of deep white matter and periventricular

white matter foci of abnormal high signal with a greater distribution in the left hemisphere than the

right, and some of these lesions are seen in the subcortical white matter as well. There is no

involvement of the brainstem or cerebellum or cerebellar peduncles or the genu of the corpus

callosum. These findings are suspicious for a demyelinating process such as multiple sclerosis.

I actually only got the report recently. The hospital just sent a negative for seizure notice to my employer. I never followed up on anything with my own doctor as my husband was going though cancer treatment so this was the least of my worries.

Since jan this year I've had random symptoms. The worst is pain in my legs. Predominately my right leg. It's an awful pain that's there 24x7. It's like my leg is chewing aluminum foil and the bottom of my foot tingles /tickles. The left leg isn't as bad at all. My legs do this weird thing, usually at night where the left will fly up when I'm laying down then straight after that the right one. I've actually kicked my husband doing it. The only respite I seem to get from my legs is sleeping with two TENS machines on the highest setting. I'm covered in bruises from hitting my leg to try and stop the pain. My legs feel really heavy and I'm having to make an increasing effort to walk and always feeling like I'm walking around a corner even when I'm walking in a straight line. I probably look like a drunk sailor as I have a habit of sticking my elbows out for balance! I frequently bat at my arms thinking I've got a spider or something on me. I've tried Gapupentin for my legs but it hasn't worked and made me put on weight so I stopped taking it. I get word blindness a lot and find myself making up words to fill in the gap. Some of them my husband and I now use like "under brush" for car wash, "under things" for drawers and "leaf cabana" for shrubs! I recently got horribly lost too when I was driving with him. It went from being funny to him saying "have you had some kind of stroke" and taking over the car. That one hasn't happened since then thankfully.

I had a spinal fusion three years ago so wondered if it was that though my back has been amazing since the op. I had a spine MRI last week and my back is perfect and it never hurts.

The final weird thing was I was sitting in the bath and my leg was like ice cold. I couldn't feel the hot water on a patch on the back of my thigh at all. I even got out of the bath thinking I must have something on my leg to stop it feeling the water. I felt like my GP would think I'm out of my mind if I ran to her with all this but my ortho surgeon was of the opinion that the leg pain could well be from nerves. I've been reticent to be too proactive following up on anything as I've been worried about the possibility of having to take time off work when we've just got ourselves straight after his cancer and I carry our insurance through work. The earliest I could get an appointment with a neuro is in October so I've got quite a while to wait.

I'm wondering what I can do in the meantime. I know it could well be any number of things and I think MS is a long shot but the leg pain is driving me crazy. It's hot here right now but my leg feels like it's in an ice bath and I just can't get any relief from it. My PCP did bloodwork at my annual physical in Jan and it all came back fine. She hasn't said anything about my MRI other than it "seems pretty normal" when she first got it two years ago so I'm not overly concerned or I feel she'd intervene in some way. My issues did actually stop in March for a couple of weeks. Totally stopped but then started up again in earnest.

I always think that with something like MS you'd kind of know you have it and I honestly don't feel that I have but I'm hoping some of you can give me insight on what I could do to alleviate my symptoms. Other than that I'm in great shape. I keep my weight down, eat healthy and work out to the best of my ability though that's taken a back seat while this has been going on.

Gimps wrote:The earliest I could get an appointment with a neuro is in October so I've got quite a while to wait.

I'm wondering what I can do in the meantime. I know it could well be any number of things and I think MS is a long shot but the leg pain is driving me crazy. It's hot here right now but my leg feels like it's in an ice bath and I just can't get any relief from it. My PCP did bloodwork at my annual physical in Jan and it all came back fine.

Welcome to ThisIsMS, Gimps. I have no medical background, but this is my suggestion:

While waiting for your neuro appointment in October, call your PCP and request a vitamin D blood test (the "25-hydroxy D" test). The vitamin D test is not routinely done, it must be specifically requested. As a matter of fact, there are many studies linking Vit D deficiency to cancer, so it would be a good idea for your husband to have this test, too. This test is inexpensive (about $50-$70, and is usually covered by insurance).

Ask for your own copy of any test results – it is important to have the actual numbers. It is not adequate to hear "fine" from the doctor's office.

Over 1/2 of the world's population is deficient in vitamin D; the estimate is even higher for the US – over 70%. Vitamin D is necessary for every cell, every system and organ in the body. Your symptoms are common to many conditions – one possible cause for your symptoms is vitamin D deficiency.

If this test is not done before you see the neuro in October, ask him for the test.

You will find good information on vitamin D at the GrassrootsHealth website: http://www.GrassrootsHealth.net

Thanks so much. I'll ask them to do the test

Gimps wrote:Thanks so much. I'll ask them to do the test

Welcome to ThisIsMS Gimps. Make sure that they also test for a vitamin B12 deficiency as a deficiency can cause a plethora of neurological symptoms. These tests include B12, red blood cell (RBC) folate, methylmalonic acid (MMA) and homocysteine. For anyone experiencing neurological symptoms, you'll really want your B12 to be between 600-1000 pg/mL. Your symptoms may or may not be related to B12, but it's better to rule it out then to make an assumption that your levels are OK.

Hi,

The way you describe your legs at night sounds very much like restless legs syndrome. A neurologist may be able to help with that. Deficiencies in Iron, Magnesium or Folate are possible causes but I would check more broadly than that. Supplements may help.
Stress can be a factor and if your husband has been unwell then that can be an influence.
I would see if you can be checked for that.
Regards,

lyndacarol wrote:As a matter of fact, there are many studies linking Vit D deficiency to cancer, so it would be a good idea for your husband to have this test, too. This test is inexpensive (about $50-$70, and is usually covered by insurance).
…
You will find good information on vitamin D at the GrassrootsHealth website: http://www.GrassrootsHealth.net

Here is a good article from 2008, "The vitamin D miracle: Is it for real?" – lots of information here:
http://www.theglobeandmail.com/technolo ... /?page=all

"Vitamin D is a particularly effective agent in inhibiting abnormal growth or development of malignancies in epithelial tissues," says Cedric Garland, a professor of preventive medicine at the University of California, San Diego.

Although many researchers view cancer as a hopelessly complex disease with different causes for each tumour type, Dr. Garland, who has been studying vitamin D for more than three decades, believes the carcinomas have a common origin in low levels of the vitamin. By his estimate, up to 75 per cent of these cancers could be prevented if vitamin D levels were raised through supplements. "I'm convinced that cancer is largely a vitamin D deficiency disease," he says.

One important function of vitamin D at the gene level that may explain its anti-cancer properties is that it helps to regulate the production of E-Cadherin, a type of biological glue that holds cells together. When this glue is in short supply, it allows epithelial cells to lose adhesion to one another, permitting some to escape from the tissue they are supposed to be embedded in. Unconstrained, these cells start to multiply at a greater rate than they otherwise would and begin forming the lesions that ultimately turn into cancers.

In addition to being connected to the University of California, San Diego, Dr. Cedric Garland works with GrassrootsHealth.

Scott1 wrote:Hi,

The way you describe your legs at night sounds very much like restless legs syndrome. A neurologist may be able to help with that. Deficiencies in Iron, Magnesium or Folate are possible causes but I would check more broadly than that. Supplements may help.
Stress can be a factor and if your husband has been unwell then that can be an influence.
I would see if you can be checked for that.
Regards,

I'd wondered about restless legs and asked my ortho. He said it's usually not 24x7 and not one leg but it's sometimes linked to kidney problems. He ran bloodwork for my kidneys and it came back ok. You could well be right though as I've had, embarrassing as it is, continence issues.

The only supplement I take is melatonin.

Hi,

It's very hard to determine as usually the doctor has to rely on the patients description. I would get a fasting amino acid study, a broad range of vitamin deficiency tests and as many blood and bowel infection tests as your doctor can think of. Unless you have a very good reason, I would try to stay away from antidepressants as they won't target the neurotransmitter that is possibly involved and can be a bit like using a chainsaw to pick a rose.
I am presuming you don't feel fatigued .

Regards,

I'm not on any medication and have never taken anti depressants. Some days I'm just wiped out all of a sudden but that's most likely because I haven't been able to sleep.

I sometimes have trouble swallowing my saliva but not food but I can get a bit chocky when I drink water so I've started using a sippy cup.

I had H-plypori (sp)? a few years back so maybe the swallowing issues are from that coming back.

I need to make a longer appointment with my doc I think. I have a tendancy to say "oh I'm fine. Just a bit of pain with my legs".

Hi,

Doctors aren't perfect but I think you have collated enough reasons to get a good check up.

Regards

Gimps wrote:I need to make a longer appointment with my doc I think. I have a tendancy to say "oh I'm fine. Just a bit of pain with my legs".

Please bear with me; I have more suggestions.

In the quiet of your home, compose a written list/timeline of your symptoms to take to your doctor's appointment – it will keep you on track in your discussion and make most efficient use of your (and his) time together. (My list of symptoms avoids forgetfulness.)

Add a reminder at the bottom of the page:
1) Ask for the "25-hydroxy D" blood test.
2) Ask for thorough, initial testing for a possible vitamin B12 deficiency. As NHE wrote, this should include a serum B12 test, red blood cell (RBC) folate test, a serum homocysteine test, and a methylmalonic acid (MMA) test.
3) With your history of leg pain, leg spasms, even swallowing difficulties (dysphasia), it might be a good idea to ask for a magnesium test, as well, since magnesium is important to muscle function and magnesium deficiency is widespread. At least, you might discuss it with your doctor.

Thanks Lyndacarol. I'll start a list and see if there's any triggers. I already food log and eat clean and typically eat the same thing every day (boring I know) so I can show them that too in case there's something that would trigger an allergy.

Is there any merit in starting a Vit D and B12 regime now or should I wait for tests? Also and I have no idea where I heard this or if it's true but I was under the impression that most vit supplements can't be absorbed by the body when you ingest them orally so they just go in one end and out the other. I did try one called Serrapetase which is supposed to be good for inflammation but it made me horribly sick. I've added tumeric to my diet. I don't eat meat but I've started on salmon which is supposed to be great for brain health as well as inflammatory conditions.

I work out a fair bit and do yoga or pilates every day. I took a 3 week break to see if that improved my symptoms but it didn't make a difference.

You have a good idea with the food log. (My diet is pretty much the same thing everyday, too.)

In general, it is best to be tested for nutrients before you start supplementing. For example, taking vitamin B12 supplements before testing will skew the results. Also in the case of B12, many people cannot absorb an oral pill from the digestive tract (if any one of the 14 or 15 proteins needed for absorption are not adequately produced in the body… or if the person has had gastric bypass surgery… or if there is an intestinal problem interfering with absorption. In other words, there are many places that the absorption pathway can be interrupted.).

IF your B12 level is insufficient/deficient, there are sublingual (under the tongue) tablets available – these are absorbed sublingually directly into the bloodstream. Another option is subcutaneous injections (small needle like diabetics use). But we are getting ahead of ourselves. Testing to establish your levels is the first step.

When considering supplements, the form of vitamin D or of vitamin B12 (or even magnesium) is important. But again, that is a bridge to be crossed later, if necessary.

You are wise to consider anti-inflammatory foods in your diet. Wild-caught salmon is a very good one (and is one of very few sources of vitamin B12 and vitamin D, too). By the way, B12 is only found in animal-sourced foods – if you don't eat meat, you may not have enough B12 in your diet. Other sources are poultry, fish, eggs, cheese – perhaps you eat these. Our member jimmylegs can give you good advice on nutrition/foods.

Hi,

Don't ever stop those forms of exercise if possible.

If you're looking at diet then I would think about making breakfast the main meal of the day. I have apple juice, a banana or pear, two boiled eggs and a whole avocado each morning. No gluten. no dairy and no pulses as are they are all sources of inflammation. If you redesign your diet around those rules it will help. I eat meat and sort of understand why some don't but it means you are missing a valuable source of co enzyme Q10 and you definitely need that. If you get it from supplements avoid cheap brands. Go for an oil based capsule preferably vitamin E or its derivatives based product.
I would also start drinking freshly squeezed carrot juice each day. Vitamin D receptors are part of a complex called "thyroid like receptors" which are controlled by another receptor called RXR. Imagine the lights in your ceiling are vitamin D receptors. They will only work if the power is switched on at the switchboard. RXR is the switchboard and needs retinoids which you can safely get from fresh carrot juice.
You can cook with tumeric but if you want the active ingredient as a supplement go for cucurmin.
For what it's worth, my thoughts are scattered across this post - http://www.thisisms.com/forum/regimens- ... 24019.html

Regards,