Been a while

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

Been a while

Postby greengirl35 » Tue Sep 04, 2018 10:28 am

Welp, every time I have myself convinced MS is not what’s going on with me, it seems to pop back up as a looming possibility. Couple questions if anyone can help. This is my 3rd bout of head pain, which results in vision issues. First was 2011, massive head pain right on eyebrow for a week, followed by a lazy eye and double vision that slowly got better over about 3 months. In 2016, happened again, basically the same scenario, but pain overlapped double vision, and vision straightened out in about 4 days. This weekend, head hurt only two days, vision is now only double when looking far away and is just making me quite dizzy. Other symptoms popped up since the 2016 incident like muscle spasms and trembling, both of which are made worse by heat and sweating. Skin has felt slight numbness on right side of body since 2016, and I do get frequent burning sensations on my legs and feet, not overbearing though. Have about 4 brain lesions but my brain MRI has never changed since 2011, never enhances. Never had spine MRI. Supposed to get an LP in the next month or so. Ugh, my neuro puts MS on and off the table it seems with every visit. Wondering if this seems like a relaps/remit pattern, where the attacks are a little more mild each time, but with additional symptoms? Also, all of these attacks happen in September or early October, or at least the ones with the head pain and double vision. Does that happen to anyone here? My sister has MS and I know that makes me a teensy bit more likely, but I am aware that there are many other mimics. Sorry so long. Just needed to vent, it’s frustrating not knowing. Thanks!
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Re: Been a while

Postby ElliotB » Tue Sep 04, 2018 12:45 pm

Is your neuro one that specializes in MS? If not, you may want to find one that does.

By the way, a spine MRI is a great idea and possibly should have already been done, along with the LP - this certainly would have been beneficial in understanding what is going on. Four brain lesions along with your other symptoms is possibly enough for a diagnosis which is why you need to see a qualified MS neurologist

What are you doing for yourself health wise with regard to diet, exercise, supplements, stress, sleep, etc?


Link to Guidelines for MS diagnosis: McDonald Criteria:

https://multiplesclerosisnewstoday.com/ ... -criteria/


A qualified MS neurologist would be in the best position to make the correct diagnosis for you...
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Re: Been a while

Postby greengirl35 » Tue Sep 04, 2018 3:36 pm

Thanks for your response. From what I have read about my neuro, he’s not an ms Specialist. I know there is one in a nearby hospital to me that I have looked up before so I am considering making an appointment with them. I figured I would go ahead with the LP since it’s already ordered, as I would like to get it done this year because my deductible is met, but regardless of the result, I may make appointment at the ms clinic at that other place following that. Especially if my neuro doesn’t order a spine MRI. As far as diet, I eat a good amount of fruit and veggies, chicken, usually a protein smoothie for breakfast packed with berries and banana and as much spinach as I can jam in there. I’m gluten free as I did an elimination diet back in April to try and tackle some of these symptoms that way. I found that a stomach pain I was experiencing since I had my twins has gone away since I ditched the gluten. I try to avoid dairy most of the time (I like some cheese sometimes). I am overweight but have been losing pretty steadily since going gluten free as I just naturally don’t eat many carbohydrates, and it really has changed the way I eat for the better. I don’t buy gluten free bread or anything very often, maybe a wrap once a week. I do yoga-like workouts 4 to 5 days a week and have a hard time with cardio this time of year as I get hot and sweaty and this makes me tremble and not feel well and lately, causes muscle spasms. Drink a good amount of water. I take 2000 iu’s of D3, 100 mg magnesium, 500 mcg b12 and 400 mg CoQ12 daily for supplements. My stress level is moderate, one of my 4 year olds has an autoimmune condition, so I know that provoked some anxiety. I do take the lowest dose of Zoloft, and have on and off for several years, it does help. I am a massage therapist, so my job is kind of the opposite of stressful. I used to smoke, and I only drink alcohol once in a while. In fact even a few drinks makes me feel awful last few months so I avoid it more now than ever. When I reviewed the diagnostic criteria before I noticed that I pretty much meet the standards of it by now, and I saw my neuro a week ago for an emg (negative except carpal tunnel) and was discussing my symptoms as well as the fact I could feel the head pain coming on, which is why he ordered the LP. I noticed when I emailed him through the portal today that it says MS in my diagnosis field, but he never said that to me. I’m thinking it’s possible MS, and he’s waiting for LP to confirm maybe? Sorry for these incredibly long posts lol.
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Re: Been a while

Postby greengirl35 » Tue Sep 04, 2018 3:41 pm

To clarify, he did say my symptoms sound like ms, but didn’t tell me that was my diagnosis.
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Re: Been a while

Postby ElliotB » Tue Sep 04, 2018 4:54 pm

Not sure if you are aware that there are about 400 illnesses that mimic the symptoms of MS.

So is your neurologist a MS Specialist?
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Re: Been a while

Postby greengirl35 » Tue Sep 04, 2018 5:16 pm

No, my current neuro is not an ms Specialist. I am definitely aware there are a lot of things that mimic ms. When I first saw this neuro in 2016, we talked about that a lot, and he is pretty thorough. Ran ridiculous amounts of labs, sleep studies, VEP. Still want to get more thyroid testing done though if this LP comes back clean. Thanks for your help.
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Re: Been a while

Postby ElliotB » Tue Sep 04, 2018 5:43 pm

From personal experience I can tell you that you should only see a neurologist that specializes in MS at this time. My first neuro assured me I did not have MS. I was too sick to accept his diagnosis so I sought out a MS specialist. This one read the same MRI disc and made the correct diagnosis. And ultimately I assume you want the correct diagnosis, good or bad, sooner rather than later. Good luck!
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Re: Been a while

Postby NHE » Tue Sep 04, 2018 11:14 pm

Hi GreenGirl,
As you know, an MS diagnosis is a diagnosis of exclusion. Many tests, even when positive, provide evidence that's 'consistent with MS' and not 'definitive of MS.' The spinal tap is one such test. A positive result indicates that there's inflammation in the central nervous system. It does not define the cause of the inflammation. The results of your spinal tap will need to be evaluated along with all of your other test results.
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Re: Been a while

Postby jimmylegs » Wed Sep 05, 2018 6:07 am

hi :) when i had intense head pain and eye symptoms (once, starting in feb of this year) it was absolutely active lesions and i was unconvinced that they were a direct result of ms, even with my 12 yr old dx in the mix.

do you have any long medical words for what went on with your eyes and eyesight? any meds or pt?

re muscle spasms, trembling, numbness, burning, has anyone referred you to a preventive health pro? dietitian? what's your diet and lifestyle like overall? what meds? any supplements in the mix? devil can be in the details!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Been a while

Postby greengirl35 » Wed Sep 05, 2018 7:05 am

Hi Jimmylegs, when this happened it 2011, it was the worst case for double vision as my eye was lazy and it took months to go back to normal. I didn’t have health insurance at the time so I had just gone to emergency room where they gave me an MRI of my brain without contrast. They assured me I wasn’t having a stroke, and told me to follow up with a neurologist. I found one that was willing to see me for 50 bucks, and he just called it an idiopathic something or other. He told me to get health insurance lol. In 2016, when I saw the neuro I see now, he thought it was migraine related, which I suppose it very well could be, but it’s not typical migraine behavior as the head pain is very localized and lasts for days to over a week, and between these episodes I’ve only ever really experienced sinus related headaches or the occasional mild headache. He did diagnose me with sleep apnea, which I now have a cpap and I question the validity of that diagnosis as I didn’t really sleep during the actual study, either way, I use it, maybe it helps. I have never been to a dietician before. My primary care doctor does functional medicine now and she had suggested an elimination diet back in February when some of my burning sensations came about. I had gotten sick with some sort of virus and it hit me really hard, started having the burning, muscle spasms, and a lightning type pain that starts in my hip and radiates down the side of my thigh. I gave some details about my diet and supplement routine above, let me know if you want more specific. Thanks for your response.
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Re: Been a while

Postby jimmylegs » Wed Sep 05, 2018 7:58 am

ok so you have records re idiopathic _________? was it 'ophthalmoplegia'? (this is one of the only words i know for eye stuff secondary to headache stuff sry)
re migraine, lots of potential action items for that. i will have to read up on sleep apnea and cpap stuff - i know the basics not the possible associations that could be informative.

elimination diets bug me. prior to dx, i eliminated myself into a deep pit of multinutrient deficit. took years to dig myself out and i am stuck with permanent damage so yay me. sry i'd missed your great info above. feedback:

I eat a good amount of fruit and veggies, chicken, usually a protein smoothie for breakfast packed with berries and banana and as much spinach as I can jam in there.
what is the fruit to veg ratio? what percent combined produce in relation to total daily intake?
any diversity in the animal protein sources? any seafood or red meat servings in a given week? what about diversity of alternatives? beans? eggs? nuts/seeds etc in the mix? and how about whole grains? i'm a fan of the harvard healthy eating plate. i don't obsess over every single meal, but work to achieve the proportions in over the course of each day. it's not perfect but it's better than say the canadian version. marginally haha.
I’m gluten free as I did an elimination diet back in April to try and tackle some of these symptoms that way. I found that a stomach pain I was experiencing since I had my twins has gone away since I ditched the gluten.
as i mentioned elimination diets bug me. i know they have their place but if you have never been referred to a dietitian there's a problem. interesting that you mention symptoms after building two humans at once. ;) that can take a lot out of you, in terms of your on board resource pool. elimination protocols in the context of a likely depletion scenario just makes me mad.

when i was first diagnosed i went to a local naturopath also with ms and she gave me all this status quo elimination info associated with avoiding 'potential' allergens. i had been an increasingly strict vegan for 15 yrs prior so the concept the naturopath recommended, which included eliminating things i *never* ate, made no sense at all. unfortunately the dietitian i later visited was a campus dietitian not an ms pro so i didn't get much help there either.
i try to avoid dairy most of the time (I like some cheese sometimes). I am overweight but have been losing pretty steadily since going gluten free as I just naturally don’t eat many carbohydrates, and it really has changed the way I eat for the better. I don’t buy gluten free bread or anything very often, maybe a wrap once a week.
as far as i am concerned gluten avoidance is one of those things i consider a crutch to weak and broken system in preference to a boot camp recovery regimen. yes, avoiding gluten may allow you to retain a few more nutrients. yes, the wheat may have been raised in zinc-depleted soils, promoting a more allergenic ratio of glutenin to gliadin. i used to react badly to gluten. but the loss of whole grain, in preference to increasing total dietary nutrient density, kind of feels like throwing out the baby with the bath water - esp given the mountain of science evidencing benefits of regular whole grains consumption (which does not necessarily include gluten grains specifically, of course).
as for dairy i have reintroduced it but keep it to a reasonable amount. milk in tea. milk/cream in coffee. butter and cheese are not daily things and when consumed, amount is small. little personal oddities: pizza restricted to one every other month, not a baker or routine consumer of baked goods, etc.
I do yoga-like workouts 4 to 5 days a week and have a hard time with cardio this time of year as I get hot and sweaty and this makes me tremble and not feel well and lately, causes muscle spasms.
sounds actionable. as in adding an active women's multi. don't exercise your post-twin-building system out of a chance at good health ;)
Drink a good amount of water. I take 2000 iu’s of D3, 100 mg magnesium, 500 mcg b12 and 400 mg CoQ12 daily for supplements.
good start. magnesium details pls. timing in relation to d3, format (tab vs cap vs powder cap vs liquid), chemical form, number of pills per serving, yadda yadda)
My stress level is moderate, one of my 4 year olds has an autoimmune condition, so I know that provoked some anxiety.
action items evident here, and i have questions about the 4 yo's condition iima?
I do take the lowest dose of Zoloft, and have on and off for several years, it does help. I am a massage therapist, so my job is kind of the opposite of stressful.
nice :) i need to read up on zoloft i know less about pharma stuff than about nutrition.
I used to smoke, and I only drink alcohol once in a while. In fact even a few drinks makes me feel awful last few months so I avoid it more now than ever.
smart move to have given these up or close to it. smoking in the back story is another undesirable nutrient drain for several reasons.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Been a while

Postby greengirl35 » Wed Sep 05, 2018 11:05 am

Wow, thanks for the reply! So I really don’t remember if they used the term opthalmolpolgia or not. I have read about INO before and remember thinking it seemed an awful lot like what I had. I don’t really have much on file from back then unfortunately, but my current neuro never talked about that. Sorry I don’t have better info on that. Pretty sure my sister had INO when she was first diagnosed with MS, she always said she thinks that was what was going on with me in 2011.

So my smoothie is usually a staple in my diet at least 4-5 days a week. 1 cup mixes frozen berries, half banana, I do a half scoop of plant based protein, yields about 10 grams, full scoop is too sweet for me, and probably about 2 cups organic baby spinach. I do unsweetened almond milk or water for the liquid. Some mornings I switch it up with scrambled eggs and some watermelon. In the fall/winter I do like oatmeal with cinnamon, applesauce and walnuts or pecans. Lunch varies, but more often than not it’s chicken over salad with oil based dressing and avocado. Sometimes I will plop that into a gf wrap, but not often, they are kind of gross. Tomatoes, because my garden is nuts this year. Aside from chicken, veggies and brown rice, other dinner items usually consist of ground beef either with beans in a chili or sometimes ill make tacos and build it on a corn tortilla or lettuce wrap, sometimes a spaghetti sauce, but I usually only do gluten free pasta once a month, if that. I have an obsession with zucchini noodles or carrot noodles instead. For seafood I do grill shrimp probably every other week, or maybe salmon once or twice a month. I stick to one cup of brown or wild rice when I have it, and veggies on my plate are usually closer to two cups. I do splurge on gluten free pizza probably once a month (twice last month, birthday pizza lol). I try to avoid snacking lately unless I feel I need it, and try to stick with grapes and nuts, maybe some hummus with either veggies or gf crackers. For splurge snacks I definitely will hit up some popcorn, gf cracker with hummus and turkey pepperoni, or Tostitos with salsa, but try not to have it in the house often. Butter is sometimes used in cooking but not very often, I do drink about two cups of coffee per day, one teaspoon raw sugar and almond milk.

The D3 softgels (1,000 IU per, I take 2)I take in the evening with my magnesium which is magnesium lysinate glycinate chelate. I started with 2, then moved to 1 caplet, they are 100mg per cap. I also take Zoloft at night. In the morning I take the B12 gummies, 500mcg (methylcobalamin), and 400mg of the CoQ10. The only thing I was told I was on the low end of normal was my D, back in 2016, so I started taking 3,000 IU’s through winter, dropped it down to 2 in the spring/summer. When tested in March it was at 44? My neuro said that was great for March.

Yes building two humans was definitely a drain lol. They were large babies too, for twins they were huge. 8.9 and 7.3! I was lucky I had a good pregnancy, no complications or anything. My daughter was diagnosed with Juvenile Dermatomyositis when she was 2.5 years old. You probably have never heard of it, hell, her pediatrician never had lol. Very rare autoimmune disease that affects blood vessels and muscle tissue. She started with a malar rash then rash was over every one of her joints, I knew it had to be rheumatic of some sort. She had a hard time walking up stairs. They did very intense treatments with steroids, methotrexate, IVIG, now she is down to one med, just Cellcept. It’s been a long road but she is doing amazing, and hoping her Rheumatologist tells me she’s in full remission when we see her at the end of the month. I know I forgot stuff that you asked about, so I will re-read. Thanks for all that information, I kind of agree about the elimination diet because my doctor suggested it without first asking me about what I was even eating?! She always asks me about my sugar intake because diabetes runs in my family, but my A1C is always on point, which makes me happy.
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Re: Been a while

Postby jimmylegs » Wed Sep 05, 2018 2:18 pm

heya :) i imagine your docs have a copy of your info somewhere, no? might not hurt to do some digging?

i'm not sure i am getting a clear sense of daily percent produce in diet, from all the great detailed info you are sending.
within one full day's produce compartment, would you way you have roughly equal shares of fruit and veg, or more veg overall?
glad to see the protein diversity making an appearance, as well as oats and brown/wild rice.

fwiw i have found recently that trying to eat something small every 2 hours is really helping keep my metabolism moving and slimming me down quite nicely :)

re the change in your magnesium routine, what prompted that?

glad to hear your little one has been doing well. i will have to do a little light reading to brush up on jdm ;) lol

will be back on again later ttfn!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Been a while

Postby greengirl35 » Thu Sep 06, 2018 6:54 am

Yes, I will have to see what I can dig up from 2011, all I have is the mri from the ER on disc, but maybe my current neuro got notes or reports from that time. I would say most days the fruit to veg ratio is about equal. Some days the fruit may be more, but on average they probably balance out. With the magnesium, I started with one caplet, then bumped up to two, but found it was making me feel tired, so I went back down to one. I’m sure it would have passed if I stuck it out. You think I should bump it back up? I really should be having snacks in between meals because I have had more luck doing that in the past with weight loss. I actually weighed myself this morning and have lost 6 pounds in the last 7 days, probably just since I haven’t been feeling well with the head pain and all. Thankful that has passed but my vision has unfortunately doubled up fully at this point. Guess it’s better than pain, silver lining you know.
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Re: Been a while

Postby jimmylegs » Thu Sep 06, 2018 7:25 am

hi again :)

maybe see if you can push total daily veg to 75% and fruit to 25% or thereabouts. if you check it out, hhp is clear that veg should get the larger share.

re mag and d3. i wonder if it would not make more sense biologically to take d3 at 'high noon'. i don't have any specific evidence for that more common sense assuming you are not living in the far north (or far south for that matter).

definitely smart to take mag with d3, and ensure some well away from it too. aside from the mag/d3 combo, whether you need more mag via pills on any given day will obvi depend to a large extent on how much mag you are achieving from diet as your base.
it's a very good idea to suss out the food contribution. could help you decide whether you would benefit from more if not every single day, maybe on alternating days or every few days or whatever.
maybe a mag pill on an as-needed basis in the morning, followed by mag and d3 midday could work without making you tired.

congrats on your recent achievement! it's kind of astounding how much you can need to eat to lose weight right?? i had oats and berries and flaxseed and milk for breakfast, 1/4c custom trail mix for snack, already looking forward to hearty homemade soup at lunch :D

question about your vision. is it clear for each separate eye when you cover the other? do you have nystagmus in one or both eyes? how are your eyes behaving with hard left and right gaze? do muscles feel tight around your eyes? when my vision doubled up earlier this year, my doc said go to emergency they will have an ophthalmologist on duty. i don't know if that's an idea you would care to pursue. yours sounds like it clears up way faster than my did. i had to figure out physio for it on my own and it took me a solid month to get the all clear to drive again. was super rewarding to fix it that's for sure!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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