j3apps44 wrote:Hello all,
A couple months ago I was diagnosed with MS based on MRIs and spinal tap and a few symptoms. MRIs did show lesions in lumbar area of spinal cord and a few in brain. Neurologist said he wasn't worried about brain ones. Thing is, the symptoms I originally had I still have and it's been 7 months. So here's the rub:
Started about 11 months ago when I noticed my butt cheeks getting sore after just 30minutes sitting. [I had a desk job.] This soreness continued but wasn't unbearable, just noticeable. Then about five months later I had difficulty going pee. Went to doc, he prescribed drugs to relax bladder. Then about a week later I noticed pins and needles in right foot and over several days it got worse and worse and started to go up leg and rt foot swelled up. Went to ER, had MRIs and spinal tap and many blood tests, along with steroids. This is when I was told I had lesions. [Peeing problem went away, and wasn't on bladder relax drug while in hospital] After 3 days at hospital went home. Foot swelling went away but instead foot got red during showering or too much walking on it. Pins and needles sensation continued and is continuing. Also have a bit of Lhermitte sign. This is it for me: I haven't had any double vision, balance problems, coordination problems, strength loss, pins and needles in other places. Just pins and needles in right foot, redness of right foot if too much activity, and Lhermitte sign. Ohh, I really can't do much physical activity because that worsens right foot pins and needles sensation.
I had B12 checked--it's okay. My diet is, and has been for over 30years, a Mediterranean diet, so lots of fresh fruits and veggies and whole grains. I'm slim and active, I mean I was active.
Some other tidbits: I cannot sleep/lie on my right side--it causes right foot distress. I've had two discectomies in lower back. All MRIs and docs say there's nothing wrong down there.
So as I said, main Neurologist said I have MS. I went to another Neurologist and he said I have atypical symptoms for MS. What do you all think and say?
thanks for your input
CaliReader wrote:You asked, so here's my two cents.
Bladder issues are typical for ms. Pins and needles are also typical. L'hermittes is common. None of them are uniquely ms, but all three together is the sort of combination that could be ms, since the mark of the disease is the damage in many parts of the nervous system at once causing multiple lesions and multiple symptoms.
You could get a third opinion, from an ms specialist neurologist. If you have ms, the good news in your case is that your issues are so few right now. You might be one of the lucky ones who would never have been diagnosed without an mri machine to confirm the damage. I can't advise you re whether to take meds. That's your choice. If you do decide to take Tecfidera, I would read carefully the advice here on reducing side effects.
jimmylegs wrote:ah, low meat.. that explains the b12. try to keep it at least 500.
now, low meat + whole grains prompt me to ask for a three day food/fluid/meds/supplements diary.
I could look for combinations that might be contributing to depletion in combination with your activity level.
jimmylegs wrote:hi yep granted I was assuming your 309 was in pg/mL and that would be the units for the 500 target too.
the number is lower pmol/L (what my local lab uses) - for that target I just multiply by 0.738. I use 500 pmol/L anyway, to be on the safe side.
I would just ensure your intakes of b12 and its various cofactors are well above the recommended daily amounts. RDAs are for healthy normal maintenance - not high enough for athletes. esp symptomatic athletes. and certainly not for patients who often need therapeutic 'building' ,once you get a look at their bloodwork.
so with b12, if you can get a daily 1000mcg sublingual methylcobalamin dose in you, you should be all right BUT you do not want to ignore or disregard the interactions that would typically occur in whole foods. that's where the attention to cofactors comes in. so you don't end up having to take 2000mcg or 5000mcg trying to keep a b12 level up, while disregarding all the interrelated systems stuff that is supposed to be going on with it.
if you can manage blood tests once a year it's better than nothing. you could choose the end of winter if you wanted to get the worst case scenario for vit d3 status.
now as for nutritional yeast, I have never yet seen an experiment evaluating dose response for that. can't hurt to use it - I just couldn't say how effective it would be at keeping the b12 levels high enough for good cognitive function. it might be enough to keep the more in your face physical b12 deficit symptoms at bay though - the numbness and weakness etc. personally, I never took those symptoms seriously enough back when they were still reversible. too late now :S
anyway yes re the diary, I should be able to spot any glaring issues pretty quickly, if you provide it. you can post it here or send it via private message or email (see my user profile details). the more detailed and specific you can be re food items, serving sizes, combinations, and timing, the better. for supplements the dosage, forms, combinations and timings are key too.
Users browsing this forum: saja