This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi - I'm a 42 y/o mom of 3 and I'm having an MRI on Friday. I'm officially in panic mode thanks to Google. I'd probably be in panic mode anyway because of my symptoms, but Google is making them worse.

3-4 weeks ago I had brain fog. I had to ask my husband 3 different times because I absolutely had no memory of what he had said the first 2 times. I put the broccoli away in the dish cupboard only to discover it the next day. Odd words were popping into my sentences. I'd be saying something like, "It's time for school" and it would come out like, "It's time for refrigerator." I Googled and got lots of MS hits. Well, after a few days it passed and I thought maybe it was stress ~ busy mom with 3 young kids ~ it makes sense. I could even laugh about it a little.

Then symptoms appeared 2 weeks ago and I'm not laughing anymore. I started tremoring. I don't know how to describe them other than they are small and very fast. I feel like I'm plugged into a socket and am pulsing electricity. They are not visible to anyone unless if I hold a piece of paper. They never stop. It doesn't matter the position I'm in. Sometimes they get stronger and I feel them powerfully in my chest - like my heart is racing, but it's not my heart. They started on my upper half and a week later they moved into my hips and legs. That's when my dr ordered the MRI.

I've always had a problem with hand numbness and actually had carpal tunnel surgery in November. But my symptoms returned 6 weeks later albeit mildly. My surgeon was top notch and rated among the top 3 in town. He's baffled, but finally said I am fine and the symptoms will go away. They are not. A couple times I've woken up and had my entire hand totally numb and had to look to see if it was still there. Yesterday the pins and needles moved into my legs and feet. The soles of my feet took turns going numb.

And now I'm panicking. Whatever is going on is clearly neurological. I've been having massive sinus pressure at the same time, though. Antibiotics have gotten rid of the headaches, but the pressure in my cheek and eye are still there. I have 2 days left on the antibiotics. Is it possible for a sinus infection to cause this? I've had a sore neck, too. Could a pinched nerve cause non-stop body tremors? Or are they sinuses & sore neck symptoms likely part of something 'else'?

I don't know? My doctor did blood work and thyroid, glucose, and blood levels all came back normal. I started taking b-12 and yesterday I bought some magnesium/Vit-D supplements. I WANT another option. I want to stop vibrating. Could it be anything else??

If you've read this whole thing - thank you. I'm scared. I want to just skip the MRI and hope that everything just spontaneously goes away.
Christy

hey there, it's a scary time when you still have all the new symptoms and not enough information. we've all been there and can empathize.

it's hard to say exactly what the source of your specific neurological issues are, but it sounds like the docs are on top of testing for you.

addressing common societal nutrition issues is a great proactive start.

mag/vit D is an important choice, but you might need a separate mag supplement to take at a separate time from d3 too.

b12 also good - even better if you grab a high potency b-complex

you might want to ask your docs for d3 and zinc tests. if you get it it will likely come back 'normal' but normal includes sick people.

for vit d3 you can come back 'normal' down to 70nmol/L but ms patients aim for 125-150nmol/L.

'normal' range for zinc is about 10-20 umol/L. ms patients average around 13 to 14. healthy controls average up around 18 umol/L.

that's a start at least. lots of support here at TIMS, welcome, and if you have questions fire away

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Christy
I know what a scary time this is. But instead of being scared of the MRI try to turn it into a positive (I know-easier said than done!) But the main reason you are so scared is the fear of the unknown. The MRI will (hopefully) give you some answers and you will know what you are dealing with and can then make a plan. Take some deep breaths and try as best you can to be calm. Feeling as you do right now only makes your symptoms worse. The more you can calm down the better it will be for you. Your MRI is only a day and a half away. And although you may not get results immediately by having the MRI you are already being proactive. Once you get the results you will know how to proceed.

We are here for you. Sending you positive thoughts!

Lori

Thank you both so much for taking the time to reply. Yes, it absolutely is the fear of the unknown that is so scary. Terrifying actually. I was too scared to sleep last night because I was afraid of waking up and not being able to feel my feet or legs.

I had about 15 minutes tonight when my tremors got quiet. It was so peaceful and then I started to get hopeful that maybe just maybe this craziness would go away. They're back, but at least for the rest of today, that little bit of peace has done wonders for my fear factor.

I have some questions about the vitamins/minerals. Is there a recommended dosage of Vitamin D or Magnesium? Or would any one not in combination with another be good?
Also, in regards to the zinc & vitamin D testing, what will the zinc tell me? If the zinc in MS patients is around 13, is that number used for diagnostic reasons? Or does that mean if it's raised up to 18, symptoms would be helped? And the 125-150 for Vitamin D - is that a number to shoot for after taking supplements/diet?
Sorry for all the questions ~ I'm just trying to process all of this.

Thanks again for your replies. I really appreciate the support.
Christy

hi christy glad you got a little reprieve last night.

as to the supplements - research suggests adults use about 4000 IU per day. many of us here are taking daily doses in line with that recommendation.

yes 125-150 is what you want to aim for after diet/supplements. research has investigated ms risk by dividing a large group of people up, measuring their d3 levels, and seeing who got ms. the group who had the least risk, ie the group with levels 100 nmol/L and higher, had the lowest risk of ms. most doctors will say you're fine if you're above 70 nmol/L but that is about keeping levels of parathyroid hormone in line so that you don't develop osteoporosis. you have to get well up over 100 to see the benefits for the immune system. you don't want to go over 250 nmol/L due to risk of hypercalcemia. that's where the warnings about vit d3 toxicity come into it. anyway there is 30+ years of research looking at vit d3 and the immune system.

vitamin d3 uses magnesium for absorption. i used to take 4000 IU per day liquid vitamin d3, and i took it with a calcium magnesium zinc liquid supplement at the same time. i developed some new symptoms and did not realize until a pharmacist clued me in that i had trouble because of suboptimal magnesium. he said to take some extra magnesium at a different time from the d3, which i did, and my new symptoms resolved. it took a long time for me to build up stores, but now at last i can manage days off from magnesium supplements without my worst deficiency issues coming right back. i had tested in the .8 mmol/L range when i felt bad and i have tested in the .9 mmol/L range when i felt good. so the ranges in the research work for me

a zinc test will tell you whether your levels match those seen in an ms patient, or those seen in a healthy control. zinc is not used by doctors as a diagnostic test. if you tested 13 umol/L serum zinc, the docs would say 'that's normal'. which is true, but ms patients are all clustered in the low end of the normal range and healthy controls are all clustered in the top end of the normal range. zinc affects your liver's ability to absorb vitamin d3, among many, many other things.

i used to be way worse than 13 for zinc, more like 8.6 umol/L. when i got back up into the high teens, my d3 absorption tripled. ie taking the same amount made my levels jump up three times higher than expected. also once my zinc was up close to optimal, my uric acid level shot up for the first time in years.

for uric acid the normal range is 140-360. over 360 there's risk for gout. ms patients average 194 umol/L serum uric acid. less (~160) in relapse, more (~230) in remission. i learned about uric acid before zinc. first i got tested and came back 'normal' at 194. then i learned that 194 was the ms average. then i learned what the levels in healthy controls were (290-300) and started trying to eat gout-inducing foods to get my uric acid levels up. it didn't work. in the meantime i was investigating zinc and figured out i was deficient and worked to correct. then i started testing zinc and uric acid together. when my zinc was 8.6 my uric acid was static, stuck around 188-194 for years. when i supplemented zinc i got up to 16.1 umol/L at last test, and my uric acid had shot up almost 100 units, to 278 umol/L.

so for sure my body systems are functioning better, but i can't say i can feel that difference specifically. one thing that changed that i could feel, was how my brain and eyes were working. i was so messed up at one point that i could barely drive and almost lost my license. i never have those spatial problems any more.

it's my hypothesis (aligns pretty well with a health approach called 'orthomolecular') that making sure you have the right nutrition to ensure that your tests match the status of a healthy control, that you have the best chance of *being* that healthy control. there are other factors to consider but with nutrition, supplements, and testing you can get a pretty good picture of what's going on.

hope that helps and i'm here if you have any more questions

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Wow - thank you for taking the time to type that all out. It really makes A LOT of sense and is really helpful. I appreciate you sharing your wisdom and I'm sure there are others that will benefit from it as well. I'm glad you've found that you've been able to proactively create your own improvement. The possibility of not being able to drive scares me if it comes out that I have this thing. How awesome for you that you've been able to circumvent that!

The respite was nice while it lasted. I'm hoping for another break sometime today Currently I'm enjoying a smorgasboard of random symptoms that I'm busily trying to ignore. Last night introduced deep aches in my arms, hands and feet - an especially bad one in the middle of the night that kept me awake until morning. Each new symptom that pops up makes me wonder why I was complaining about the one before it. I've been dreading this MRI and still am, but now I just want some answers.

Thanks again for sharing your wisdom -
Christy

hey christy you are welcome and i'm glad it made sense. and yes i'm pretty glad i can still drive, my life would reaallly suck if i couldn't.

i hope you feel better soon. the pain and tremors make me think you're on the right track with the magnesium and d3 but you might have to get higher dosages and separate supplements instead of a blend. and some zinc

yea i hear you re new symptoms. i remember thinking over and over again, well at least i can still feel such and such, and then it would go, and then i'd say well at least i can still do this other thing, and then that would go... yuck!

i remember after my mris and getting the final dx that i was in shock i guess, i felt like my frame of reference in the world was gone, that all these invisible lines that held me in place got snapped. i had no idea what it meant and had to start the learning curve pretty much from scratch.

you've got the jump on being proactive so good for you

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

i realized i forgot to respond re a magnesium dosage. you can find suggestions in my signature links. i take a product which is 833 mg magnesium glycinate, delivering 150 mg elemental magnesium. i take one of these per day *before a meal*.

other magnesium products are difficult to absorb but can be useful if you need to clear up any constipation LOL

mag glycinate is way better for absorption but in my case i seemed to develop side effects (chronic reflux cough) from taking it on an empty stomach, often before bed... that took me a long time to figure out. when i take it before meals it's all good.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hey Mamaduck!

I'm also a 42 y/o mom of 3, and going thru a smorgasboard of MS related symptoms. I can totally sympathize with you. I, finally, have my first neuro appt next week, and my spine MRI can't be done till Nov 2011! waiting lists here are really bad. I'm hoping my Neuro Dr will be able to speed things up.

Take care, hang in there as best you can. Hope you get some answers soon!

Amanda (HunnyBunny)

Welcome to Limbo Land!!!

Population: ????

As a proud citizen of Limbo Land, I can completely understand what you are going through. I first started having problems in the Spring of 2006. I had tingling in my legs which started in my right calf and foot and progressed to both legs. Then one day my whole left arm went completely numb, so I went to the ER (big waste of time and money, I don't recommend it). The Dr at the ER told me the only thing they knew of that would cause something like that is MS. She then referred me to a neurologist, which was even more of a waste of time. I became a human pin cushion and had every test known to man done to me, MRI of my brain and spine, Spinal tap, blood work, you name it. Nothing showed up. My diagnosis? Nothing.

Fast forward 5 years to today. I have experienced the leg tingling with increasing severity. Today my legs cramp up on me all the time, and my balance problems have become worse. The vision in my left eye is blurry, and I wouldn't be able to read a single word on this page if I were to use only my left eye. I have seen several other Neuros and each one has said they don't know what I have even though the symptoms seem to be classic MS symptoms. Based on my limited knowlege, it seems that whatever I have seems to be pretty progressive, I don't have relapses, my symptoms stay with me though they do ease up every now and again. I think if I do have MS it's probably PPMS, which would explain why no lesions have showed up on any MRI's.

In any case, I'm also trying to deal with my status in Limbo Land, and the best advice I can give you is not to get frustrated. Instead, take it day by day. Document your symptoms. Be your own advocate, and do not let doctors push you around. Doctors only can work with the information you give them, and the more insight you can give them about your condition, the more they will help. I'm attempting to mount my one last offensive in trying to get a diagnosis, but this time I will be exceedingly prepared with detailed accounts into the progression of my condition so that I will not be ignored when I go in to see the neuro. Remember, MS is a clinical diagnosis, and while most doctors will rely solely on tests such as MRI's, sometimes those tools will not demonstrate everything going on in the central nervous system.

Good luck!

Joel

Hi all and thank you so much for your replies! This is such a scary time and it really helps to talk with others that understand the fear, the worry, the symptoms, etc... I'm sorry that I even had to look, but am thankful that I have found this little oasis on the net.
I am typing fast because on a scale of 1-10, today has been in the negatives. My toddler had to go to the ER this morning and has been admitted to the hospital with RSV. I am home from my MRI, grabbing stuff and heading back to the hospital to spend the next night or two.
I wanted to say that the I survived the MRI and am now in waiting mode to hear from my doctor on Monday or Tues. While in the machine, my buttocks and my legs started to go numb. I'm hoping for some kind of definitive answer. My conversation with the tech afterward went something like, "You did really well. Your doctor may have you schedule a follow-up appointment to discuss how these tests went." I'm sure that she says something like that to all the patients, but somehow I would have felt better if she'd have said something more to the effect of, "Your doctor will be in touch with you." The "follow-up appt" immediately made me think that she knows but can't say. Anyway, it's over. The symptoms are still here and getting stronger, so onward and forward I go. As do we all.
Have a great weekend everyone and thanks again for your words of encouragement.
Christy

chin up christy we're here for you.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

[Effects of selenium supplement on acute lower respiratory tract infection caused by respiratory syncytial virus].
Liu X, Yin S, Li G.
Abstract
An intervention study was conducted in 75 young children under one year hospitalized with pneumonia or bronchiolitis caused by respiratory syncytial virus (RSV) to evaluate therapeutic effectiveness of selenium (Se) supplement on acute respiratory lower tract infection caused by RSV with randomly controlled and double-masked method. Trial subjects were divided into two groups, one with 37 children in routine treatment and the other with 38 children in routine treatment plus Se supplement. The control group derived from 35 normal children during their physical check-up in the out-patient department. Sodium selenite was supplemented orally with 1 mg on the second day of hospitalization. Results showed that days needed for their relief of symptoms and signs were fewer in Se supplement group than that in controls and recovery in indicators of cell immune was better in the former than that in the latter. Levels of Se and glutathione peroxidase in plasma and white cells could be increased by Se supplement. It suggests that Se supplement can promote recovery from RSV infection

a daily maintenance dose of selenium would be 200mcg. usually you can get that in one pill. so it looks like they gave these kids was a one time dose of 5 pills or equivalent.

selenium kicks butt - selenium status predicts hiv-aids survival!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

While everything is new, i would visit a upper cervical care Dr. to see if you can benefit from ucc

Hi there -- I said I would stop posting since I am so tired but I wanted to send you encouragement. I am also a mom of three (but I;m 48!) and I am so, so sympathetic. It sounds like you're getting the right attention and your family is with you. But you have a lot of family stuff to do!

I just wrote a reply to jml that I hope you will read. I can't rewrite it.

All the best to you.