This Is MS Multiple Sclerosis Knowledge & Support Community

Hey, so new to all of this but curious of a few things about MS.

The basic gist of my story is as follows:

I have been experiencing fatigue for a while, maybe 2-3 years. If I'm sitting and not actively engaged (say in a college class or a boring work meeting), I almost literally cannot stay awake. I used caffeine to cope.

This didn't set off major signals because a) I've never been on a good sleep regimen. b) I also have RLS/PLMD (legs kicking in sleep, though it's largely treated now. c) I've always been a tired person, despite being actually somewhat active (walking/running long distances sporadically).

Then last month I had a bout of optic neuritis, all of the classic symptoms. I saw an optometrist (nothing found), then a retinologist (confirmed central serous retinopathy), and finally a neuroopthalmologist who ordered a brain MRI.

The brain MRI came back with nine lesions throughout the brain and was "suspicious for demyelination" (more or less confirming optic neuritis), though the neuro said a) they could be idiopathic and fade, b) they were micrometer and not pronounced, c) they did not show enhancement, d) there were only nine, which is the cutoff for being significant. The doc said I was "suspicious for MS", but that he couldn't make a diagnosis. Fortunately, I have no tumors, hydrocephalus, or signs of hemorrhaging.

I am scheduled to follow up with an MS specialist for more testing (spinal tap probably and other things). I'm pretty sure I'm going to be diagnosed with MS soon.

The real concern for me at this time is fatigue. While I can do day to day tasks and stay physically active, I really despise being tired all of the time. I still work full time in a very cognitively demanding environment, but if someone were to ask me to wake up early (to meditate, yoga, walk to work et al) that sounds like an impossible task. Also weekends are spent mostly in bed at this point, which really sucks. Obviously I can do regular tasks but it takes effort. A full day of any activities drains me. Strangely, the fatigue is worst in the morning and tends to get better throughout the day, and I am VERY awake near evening and nighttime.

Does this eventually go away? Even if it comes back (stronger, presumably), does it wax and wane like other MS symptoms? Or am I stuck with this now, and it only gets worse over time? I can't seem to find any good information from perfunctory browsing on the net.

Thanks in advance.

hi can you share any info about diet and lifestyle? food habits, fluids, meds, supplements? sometimes habits can result in gaps or imbalances and associated symptoms. it won't do to have that kind of thing in the mix while working through a differential dx process.
how have you been treating the RLS, and are there any other odd seemingly unconnected signs or symptoms in the mix?
just for one obvious go-to where fatigue is concerned, do you have a recent serum iron panel on file, w ferritin levels etc? what are your main dietary sources of iron and can you estimate your daily intake in mgs? do you have high intakes of anything that could have a negative impact on your iron retention and utilization? things to consider perhaps

Hey Jimmy,

As for random symptoms, I did ingest a massive amount of heroin about 2 years ago and woke up in the morning with no feeling in my legs and feet. I had a spinal MRI to look at transverse myelitis or spinal strokes, and everything was negative. I recovered fully within two days. I chalked that up to the heroin, as it is rare but known side effect of being clean for a while and then ingesting heroin, (I've been drug free since that day).

I'm treating the RLS (successfully as my recent polysomnogram confirmed) with moderate dose Mirapex every night. I had a standard blood panel with ferritin about two years ago and nothing remarkable. I am going to get another blood test done, but it is only for the standard Lyme/Syphillis/etc testing to rule out other conditions.

My diet right now is okay but not spectacular - I eat a banana, apple, fresh blueberries, and eggs for breakfast every day. I eat whatever my work caters for lunch, but try to stay heavy on the vegetables (salad) and low to zero on the fats, some carbs like rice or noodles, occasionally shrimp, peas, etc. I don't eat much for dinner, usually takeout of some kind or just nothing. I also eat large amounts of junk food occasionally (trying to cut that out!!).

I plan on having a much healthier diet very soon as I realize what's going on - many more fruits and veggies and no junk food (just got a masticating slow juicer ten minutes ago )

My exercise on a slow day is walking about 2 miles of brisk walking, around 5-8 thousand steps (when I was wearing a fitbit), but I splurge sometimes and walk 5-10 miles or run 5-7 miles some days also. My job is very sedentary. No resistance training as I had a joint injury that won't heal, which is surprising since I am so young.

I take Magnesium Citrate supplements every night for RLS (probably doesn't do much), and will add Thiamine soon. Probably should add some iron in the mix since I don't eat very much meat at all and I think it would be hard to get iron from the occasional load of peas and kale.

Thanks

hi you know, i don't believe i have ever looked at the nutrient depletion possibilities associated with hard drugs, although you see connections between nutrient depletion and alcohol abuse all the time in the literature.

good for you re staying drug free since that episode. i know one big intake is not the same as chronic abuse, but i did find this related oldie:

A vitamin profile of heroin addiction.
http://ajph.aphapublications.org/doi/ab ... 69.10.1058
"45 per cent and 37 per cent had vitamin B6 and folate deficit respectively, whereas deficits of thiamine, vitamin B12, riboflavin, and nicotinate were recorded for 13-19 per cent of the addict population"

not that you want to look only at vitamins of course. but re your specific plan, you might do well to consider a b50 complex rather than thiamine alone.

this file is FASCINATING!! i haven't had much time to dig into the nutritional components of addictive behaviours but there are some very interesting studies cited: http://mhof.net/sites/default/files/Add ... Report.pdf

Most recovering addicts have developed serious nutritional deficiencies of key proteins, fats, vitamins, and minerals and disrupted their ability to digest carbohydrates effectively (DesMaisons, 1998; Finnegan and Gray, 1990; Larson, 1997; Stitt, 2004; and others). ... Barbara Reed Stitt Ph.D., a former probation officer ... reviewed the diets of thousands of probationers and noticed the following common food patterns:
1. No breakfast.
2. High consumption of sugar and refined carbohydrates.
3. High consumption of processed foods.
4. Low consumption of protein.
5. Low consumption of fresh fruits and vegetables.
6. High milk consumption.
Dietary habits, such as those above, provide too much sugar and too few vital nutrients—nutrients that are especially important for recovering addicts who are battling chemically depleted brains and bodies, digestive problems, and other health issues that prevent them from absorbing and utilizing nutrients effectively....
The late biochemist Roger Williams, for example, found that rats that were deficient in certain vitamins (e.g., Vitamin A, thiamine, riboflavin, pantothenic acid, and vitamin B6) consumed more alcohol than those that were not vitamin deficient. But once those vitamins were returned to the diet, alcohol consumption decreased (Beasley and Knightly, 1994; Williams, 1956)

i have a friend who was in AA and i did ask about the nutrition aspect because you know nutrients will have been depleted, but she said they didn't get into it much, in part because it goes against the addiction-as-illness (vs behaviour) mindset. maybe time to get a little more hippocratic on that one i am glad this pdf exists.

re RLS. do you have that blood panel w ferritin info on file and can you share? i'm interested in whether your levels are in the 80-100 mcg/L range, or not. i'm not sure magnesium would do the trick with it. in my case, purely anecdotally, it has had to do with making sure iron and zinc are in proper balance (and taking either one supplementally will depress the other). 'jimmylegs' have ceased to be an issue since i began keeping track of all that carefully

re diet, consider balancing pro- and anti-inflammatory foods so that on balance, you are eating more anti-inflammatory foods each day. you can track and score a few trial days here: http://inflammationfactor.com/look-up-if-ratings/
it's a little confusing because anti-inflammatory foods get positive scores, because they are 'better' i suppose. but it's more about balance. the pro-inflammatory foods have important qualities too. if memory serves you want a +50 daily score to maintain health, and a +100 daily score if dealing with illness.

based on your breakfast info:
apple = -9
banana = -38
blueberries = -15
egg = -62

salad veg are less likely to be pro-inflammatory

back to breakfast: if you compare mine, in the fruit department i would have cherries and strawberries, which both have positive scores, instead of apple and banana.

on the weekend when i have eggs i tend to add onion, mushroom and spinach
egg = -62
onion = +240
mushroom = +6
spinach = +75
and in season, red pepper (the vit C helps absorb the iron from the spinach)
red pepper = +42

healthy fats are important - check out ratings for avocado, cashew, almond they're all anti-inflammatory options. even pro-inflammatory options can be valuable sources of important nutrients. pumpkin seeds for example. they are good sources of magnesium, zinc and iron among others: http://www.whfoods.com/genpage.php?tnam ... nalprofile

re rice: white, brown, or wild?

takeout/nothing = sadface, juicer sounds good (i am too lazy for them however)

re healing, that red flags zinc to me. consistent with low meat diet. it means you should be careful about adding iron if you are considering a supplemental form. iron and zinc don't cause problems for each other in a balanced diet. i am not a shellfish fan (although i can handle shrimp) and have been trying for years to work my way up to eating a serving of this weekly: http://www.whfoods.com/genpage.php?tname=recipe&dbid=32 (check out the nutrient BLAST in that sucker! no wonder you only need it once a week)
the good news, i finally tried and enoyed (!?!?!) homemade clam chowder the other day (yay, iron!). somebody said 'it's like potato leek soup' and that made it ok no matter what it had smelled like while being made LOL
today's challenge will be downing an oyster (yay, zinc!). i have some bacon at the ready, for masking purposes. one day, hopefully i'll be prepared to consume clams and oysters together :S we shall see. update: I ATE THE OYSTER! basically ended up being a slightly offputting bite of bacon haha.

on the animal products theme, i just had a weird thing happen over the last few days. a shocker, actually. bit of a wake-up call. i had some muscles give out on stairs in a way i have not experienced since the vegan era, pre-dx, so we're talking 2005. after a decade of replenishing depleted nutrient stores, i have been on a low animal food rotation lately and it was on a veg day that this weakness problem manifested itself. then it was chicken day, and the issue cleared up. i'll be interested to see whether it comes back next veg day. if so i think i will need to switch to veggie once every three days instead, to keep things on track. i am SO DONE with playing with fire, where my spinal cord and nervous system in general is concerned

back to you, re wound healing, fatigue and restless legs all together, i think maybe some high density, high bioavailability (animal source ) iron and zinc combo foods may be in order.

ok that is me for now. back to work i should NOT be writing such long posts. procrastinating is my downfall :S lol