Question on Symptoms

[WhatIsWrongWithMe]

So glad I found this forum! Thank you so much!

I have an appointment with a second neurologist in April. I went to the first neurologist thinking I had ALS after 2yrs of symptoms but was told ALS would have progressed faster and ALS does not include pain, which I have. The first doctor told me there was nothing else he could do for me and if I still felt like something was wrong, to get a second opinion. Hence the second appointment.

My symptoms started out 2yrs ago with a choking sensation in my throat, difficulty in swallowing (solid food sits on the back of my tongue an takes multiple attempts or liquids to get it down), and the back of my tongue and under my tongue get very fatigued if I eat for more than a few minutes. My primary doctor sent me to a gastroenterologist who found I had a hard ring in my esophagus that he stretched out which stopped the choking sensation but I still have swallowing and fatigue issues for my tongue. I also went to a swallowing specialist and was x-rayed while swallowing but they only used liquids, not solids which is where I have my problem. That test showed nothing wrong.

The second symptom to manifest was generalized twitching. My feet will jerk, if my hand is at rest a finger will pop up, etc. I type for a living and sometimes when I press a key I end up hitting it like a sledge hammer or missing the key altogether as my hand shoots off in a different direction. The jerking/twitching sensation is all over my body, even internal. I can feel stomach muscles twitching. The worst is my head/jaw. I worried at the beginning that this was TMJ related to I taught myself to keep my mouth in a relaxed state. When my jaw twitches it cranks my lower jaw to the right in a pretty violent manner and sometimes also make me crunch my teeth together. It's a violent motion and is one of the few things that actually frightens me when it happens because it's so sudden and dramatic. I'm worried one of these days I'm going to crack a tooth or bite my tongue.

I have days where I am so fatigued I can hardly function. Thankfully I work from home so when an episode of fatigue hits me, I take a 1hr nap over lunch and that helps a lot. Everyone to include my primary doctor tell me I just need to be more active, but when I'm active it almost always results in overwhelming fatigue after. As an example, I'm 51yo now and since my 20s I've had a personal rule that when I enter a building and I have to go to a floor that is 5 stories or less, I always run the stairs. Over the 5th floor (6 on up) I take the elevator. I can barely WALK 5 floors anymore let alone run them. Even walking my dog 2 miles is causing trouble which I believe led to a back spasm I had yesterday which I'll talk about more in depth later.

I have cramps/spasms in my neck, hands, forearms, lower legs below the knees and feet. The cramps in my feet can be so bad they take my breath away and make me feel like I want to throw up. The cramps in my feet/toes are so bad sometimes that my foot/toes crank around like a ghost is pulling them in different directions. You can actually see it happening. I also get a sensation in the top of my feet like poison ivy. It really hurts and itches to the point of driving me mad. The cramps in my hands and forearms just started in the last month or so and are different from the feet cramps. They are painful but more in a crushing sensation like they get hit with a rubber mallet as opposed to a muscle cramp/pull that feels sharp (to me). Cramps in my neck are very sharp and always in the same place on either side of the neck to the left and right of the spine and with a vertical sensation like lines running parallel with my spine.

In the last 2 months I've started to experience generalized eye pain, like a headache on my eyes. The left eye is worse and I'll get sensations like someone is stabbing my eye with an ice pick.

Lastly, I've experienced sensations on my skin all over my body that are like prickling, or goosebumps, very light and tickling. It's like it starts at a center point and radiates outward like a rock dropped in a lake or fireworks. I've felt it all over my bod, there's no specific spot, and it travels in waves. So if I get a tingle on my upper thigh for example, I feel it rush all the way to my toys. For the longest time it was just below my waist but lately I've felt it in my arms also.

So, what finally got me looking for a forum to talk about my symptoms before my next neurology appointment was I had a lower back spasm yesterday. I've had them a lot and know what to do, how to treat myself, etc. But what took my breath away with this one was it wrapped all the way around my abdomen and met at my belly button and was excruciatingly painful. I was in complete spasm mode for a good 5m where I couldn't even move. I've read about the MS-Hug and wanted to know if this is what people experience? I'd like to know if the hug sensation is generalized and lasts for a period of time or if it's like a spasm I had yesterday.

I came here to ask about the hug thing and look at what I wrote! i just couldn't stop typing and it all poured out of me. I'd really like any input you all have and what to ask the doctor at my appointment. I really need to figure out what this is, it's ruining my life atm and been going on for 2yrs. I swear it's not all in my head!!

Thanks so much!

[jimmylegs]

hey there

of the ms nutrient problems that can be linked to experience of symptoms, i would say your issues look most consistent with magnesium deficit. i've had a bunch of ms nutrient probs, starting with b12, then i figured out the d3 issue, i think after that someone clued me into uric acid, then the magnesium issue, then zinc (and its uric acid connection) etc etc etc.

when i got diagnosed, i already knew about my chronic b12 issues, and i took b12 like mad to try and stop what was happening throughout my diagnostic attack. the b12 did NOTHING. there was a lot more to it than that :S

the first supplement work that i did that i felt, pronouncedly, involved a whole bunch of different things - a multivit/mineral, lots of b complex, tons of vit E, lots more dietary protein, and i also ate lecithin. i used to want to know which thing helped, but it makes more sense in hindsight to think of all the ingredients needing to work together.

when my mag was low i had the worst issues with my throat and had to go to the swallowing specialist. the tests were not designed to pick up on the specific issues i was having, so they told me my throat issues were not physical, and they gave me a behaviour modification protocol. fortunately by then i had already met the pharmacist who let me know i was actually having a magnesium problem, so that was a relief. i never bothered with the swallowing expert guy again, but i paid a LOT of attention to my magnesium status.

b12 never felt like anything more than numbness and weakness. re low d3, i couldn't say if that felt like anything at all. when i was at my worst re zinc (which was also when i had the lowest uric acid, and by association you could also expect me to have had excessive levels of ammonia in my system) i felt it as severe cognitive impairment, and also problems with pain in/behind my eye, left eye especially. i had difficulty processing spatial information, especially how things moved over time, which made driving a challenge. after i figured out my zinc deficiency and worked to correct, they confusion and eye/brain pain cleared up. for a while i would still be able to feel a twinge when driving on the highway, because of how fast things were moving, but then it got all the way better and i never have that issue now.

so all that said, my questions for you would be:

-what is your diet like?
-what are your major dietary carbs?
-what about major daily source of fluids?
-do you know your daily dietary intake of magnesium, in milligrams? zinc?
-any long term prescription or over the counter meds?
-any nutritional supplements?
-any herbal supplements?
-any history of infections or other health concerns?
-what is your typical stress level like? eg emotional, mental, physical (exercise, trauma, surgery, pregnancy, lactation etc) (i noticed you mentioned others had suggested more exercise, but still wonder about the rest of it)
-weekly servings of alcohol, if applicable?
-daily cigarettes, if any?

all these things can work separately or together to affect your nutrient status. it's a good idea to make sure you're topped up, whether or not you have an ms dx. on the one hand, to stay as healthy as possible with the dx, and on the other, to make sure you have as little in common with an ms patient or other chronic disease patient as possible. a reasonable first step is to assess whether your day to day is likely to be building up your stores of nutrients, or depleting them over time when all potential factors are considered.

[WhatIsWrongWithMe]

Thanks for the fast reply! Here's some answers for your questions...

-what is your diet like?

I've had tons of problems with my stomach (GERD) and intestinal tract for years. I don't have Chrohn's, I'm not sensitive to gluten or anything else like that. I've been told I probably have IBS and to just keep track of foods that set me off and avoid them. I changed to an almost raw diet in the last year. I have two Ninja blenders (one big and one small single size) that I make almost everything in. I use Muscle Milk powdered protein, soy milk, almond milk, kale, carrots, pit fruits like peaches, strawberries, blueberries, ground chia seeds, coconut oil, spinach, limes, avocado, etc. Sometimes I slip up and eat something I know will set me off but sometimes a girl likes a cheeseburger! LOL!

*A side note on the Ninja blenders. I had my gall bladder taken out about 5yrs ago and really had trouble processing leafy greens after. They would just go straight through me. If I power blend the greens in my Ninja to tiny, tiny pieces, I can digest them just fine. It was a life-changing discovery for me.

-what are your major dietary carbs?

Steel Cut Oatmeal, quinnoa, occasionally oatmeal bread for toast. I try to stay away from any kind of sugar or fructose because that sets me off, too. Speaking of which, I did 3 breath tests awhile back and I have sensitivities to Fructose, Lactose and I had a stomach bacteria that I took antibiotics for.

-what about major daily source of fluids?

Water. Love water. 2-3 cups of coffee in the AM. Almond milk or soy milk in smoothies throughout the day. More water. A can of Coke Zero 3-4x a week.

-do you know your daily dietary intake of magnesium, in milligrams? zinc?

No clue. I really need to start keeping track of all that. I do know I was diagnosed as Vit-D deficient years ago and have been taking 2000 units of whatever it's called daily since then. When I started taking the Vit-D there was a big improvement in my mental well-being.

-any long term prescription or over the counter meds?

levothyroxin, toprol, cetalopram, omeperazole, Zyrtec... those are the big ones.

-any nutritional supplements?

Vit-D and probiotics. I buy the generic version of Align. Made a HUGE difference for me. Melatonin for sleep.

-any history of infections or other health concerns?

No.

-what is your typical stress level like? eg emotional, mental, physical (exercise, trauma, surgery, pregnancy, lactation etc) (i noticed you mentioned others had suggested more exercise, but still wonder about the rest of it)

I feel like I have a low stress life. I'm in a great financial place, have a husband who adores me, I work from home which is my comfort zone. I'm at the happiest in my life actually. That's part of what frustrates me. My primary doctor keeps telling me it's all anxiety and I'm like... but I'm happy!

-weekly servings of alcohol, if applicable?

Used to drink heavy for the past 2yrs after not drinking for nearly 30yrs. Been clean for over 2months now and have no intention of starting up again.

-daily cigarettes, if any?

No. Never smoked.

[jimmylegs]

hi again! fantastic info. diet sounds pretty great, given the limitations

clarificaton re the stress piece, can you comment on the physical component? (is history of exercise, trauma, surgery, pregnancy, lactation etc)

re the rest of your info, at first glance i'm picking up on the unknown about your dietary mag intake, and the history of isolated d3 supplementation.

there hasn't been enough research done on what exactly happens to mag status when taking just d3 alone. but there is pretty good research demonstrating that mag and d3 status are positively correlated, meaning when your d3 tested low, your mag likely was as well.

anecdotally, i have personally experienced post d3 magnesium depletion. my first issue with low mag happened after i took vit d3 by itself for too long. (well i was taking a mag liquid too, but it wasn't enough to balance my daily d3 intake and i also took everything at the same time, which turned out to be bad as well).

so then i met the pharmacist, learned that i wasn't taking enough mag to match my d3 intake, and that i wasn't timing my intake correctly, either.

d3 is a bit of a magnesium hog. so you take it, and it scours your system for the mag it needs, which means the rest of your systems which need it, suffer. and we're talking about hundreds of pathways and processes that depend on magnesium.

so think of it as needing 300mg at least per day of magnesium just for you, and then more to go with your d3. if you're only getting 200mg of mag in diet, then you can take 100mg with your d3, and 100mg at a separate time. for supplemental mag, avoid ones like mag oxide, and choose a high quality form like magnesium glycinate.

glad to hear you broke the alcohol habit. it strips magnesium from your system as well (among other things)

i will have to look into the meds stuff later, but i am thinking i see at least one PPi in there, for the GERD i'm assuming - PPIs are renowned depleters of magnesium as well. although i couldn't say how much more than the normal recommended daily mag would be needed, to compensate for losses due the PPI meds being in the picture.

sorry to hear about your GI issues. i'm afraid i don't have any pithy advice where absent gall bladders are concerned :S have you tried cooked dark leafy greens in the ninja?

also, regarding the whole GI/IBS/Crohns/sugar dynamic, you might do well to have a look at your daily zinc intake, once you've had a look at dietary mag.
on a related note, can i inquire re your main dietary protein sources?

[jimmylegs]

fyi - omeprazole mag depletion research titles:
https://scholar.google.ca/scholar?q=ome ... 5&as_vis=1

and one in particular:
Systematic review: hypomagnesaemia induced by proton pump inhibition
http://onlinelibrary.wiley.com/doi/10.1 ... 201.x/full