New and tired

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

New and tired

Postby Vesuvi » Mon Jan 01, 2018 5:38 pm

Hi :)

I have been struggling with things for a while, it seems I'm always looking for the answer to all of my issues.

I will write the list of things that goes on for me and then an explanation of tests and where I'm at.




(((((Often or regular))))) maybe 1-5 times a week consistently.
Fatigue- proper fatigue, can't get my body off the bed sometimes. This ranges from 2-7 days of intense fatigue or I will have a longer less intense period of a few weeks.
Shakes in hands - some days, when I'm trying to do something usually, hold a fork, my phone, cut something. Not necessarily when I'm holding my hands out.
Weakness in hands arms. Just a general feeling of weakness

Headache migraine) this last few months I have had a persistent headache, left temple. Goes in waves, of 3 to 4 days on - 3 to 4 off. Have to have panadol and codeine and it hurts to touch after the main pain has gone, light sensitive ***used to get these 10 years ago now have come back last few months

Spasms * legs - these are consistent, and small to large ones.

Spasms *arms/hands* this is new within the last 4ish months. Smaller. And less often.

Spasms *nerve spasms* not sure if actually neverss. But I will get an 'itch' that if I don't scratch or rub the itch it gets burning hot and will make me spasm. Usually in legs or in the folds of joints. Hips knees elbows.

Kick outs* I get an overwhelming sense that I need to fold over in my stomach, fetal position. Then if I don't do that and just ignore it the feeling will build up until my legs are buzzing and one of my legs will noticeably jump or kick out

Twitches / numbness in face and mouthlips . Usually last a few days

Cramps in large leg muscles.•

Cramps in foreArm muscle.•

Cramps in biceps.•.
•not sure if these are cramps or some other TGIF, but it's like my muscle is stuck hard on. And it's painful to move them until I massage vigorously or go to sleep

Feeling of a knot in leg or arm muscles.

Pain in back

Pain in hips.

Pain In legs hips and lower back. like I have an elephant sitting on them. Stretching helps release pain for a few minutes tops and not fully.

Constipation/runs. I used to have the runs/constipation for years like it would cycle to one to the other. Then I went vegan and it eased up and was good for nearly a year. Now I am just mainly constipated with bouts of normalcy in between


((((Less often))))) 0-2 times a week
Numbness in feet and hands (maybe twice a week if that)

Chest pain - I will get a pain in the back and front of my chest, like my rib need to be popped.

Speech - best describes what happens, took this from google
* Impaired volume control: voice becomes too quiet or loud (to quiet)
* Impaired emphasis: speech becomes slowed or broken up with inappropriate pauses, difficulty applying appropriate stress on words or varying pitches and loudness for emphasis



(((((Situationally)))))
Heat, i am heat intolerant at best. I can handle the heat vary small doses and then need to retreat to cool down. I will get dizzy and angry. Like I need to rip my skin off to get cooler.
When I have been exposed to heat (weather:shower:heater) i get pain in the back, legs, headache, angry, burning hands and feet. Like for an hour or more afterwards. I can lay on my bed after a hot shower and I'm a hot twitchy mess. (Not boiling to the point of idiocy hot, but a decent hot shower)


********hand muscle will twitch when tired/stressed

Lose strength in my hands, so much so that I have been to the dr for it

Urine- sometimes I'm so full I will leak a tiny bit

Sex - from google again, spot on.
* decreased sex drive
* reduced genital sensation
* fewer and less intense orgasms

Prgenaxy - the spasms legs was the ONLY thing that I had in the 9 months I was pregnant. If I could spend my life being pregnant I would. I floated through my pregnancy it was that good


((((Past things prolonged)))) irregular things ))))))
Consistently hand a muscle twitch in my hand for around 3 months. Used magnesium to no effect, only thing that I can pinpoint was reduced stress that stopped it.********
Chest pain-persistent chest pain for around 4 months, all tests negative for heart stuff.
Ultrasound showed nothing, was told it was costochodritis*

Neck pain - bouts jolts or spasms, maybe 5-7 times a year when I move my neck this last for a few days at a time

(((Past things)))) one offs so far

Kidney infection in July this year (first time)

Vision, about 10 years ago my eye sight got considerably worse, I jumped up two prescription in a year. Second test I was having such bad double vision I was told to come back in a Few days to retest. Double vision lasted for around 3/4days.




--------

Bowels - as from above they haven't been the easiest to deal with.
Urine- this has been getting worse as well. Feeling full and nothing there or not noticing I'm very full until it's painful.

-depression-2017 was a horribly negative year for me.


New this year
Bladder and kidney issues
Speech
Arms and hand spasms
Chest pain (prolonged type)
Depression (never been depressed before)





Tests - this year so far have had tests for arthritis, inflammatory activity, certain cancer markers, full liver and blood work. (Only thing that comes up is I have Gilbert's syndrome)


Only time bloods were off was the kidney infection.



I am currently waiting on a call back from genetic testing people in my area. We have Charcoot Marie tooth CMT in our family and my mum has never been tested. This could fit number of these symptoms but not all.


onkt other relevant things are I'm vegan (I take b12 supplements) all my blood work is good. I use magnesium spray a few times a week and I do little excercose.

I'm thinking that I could POTENTIALLY have MS. Nothing is sure, but with this list would it be wise to push the issue for ms testing Aswell as the CMT testing. I don't think a lot of this fits CMT.



Any advice would be appreciated.

Vesuvi
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Re: New and tired

Postby Scott1 » Mon Jan 01, 2018 7:13 pm

Hi,

You have been very clear and have done a very good job at explaining your situation. Well done.

What have your doctors said? Is a neurologist one of them? I'd certainly include an MRI in the hunt for an answer.

Some here are pretty good at interpreting blood tests and they may be able to make suggestions if you posted the results you have.

Regards,
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Re: New and tired

Postby Vesuvi » Mon Jan 01, 2018 8:46 pm

Go scott1, thank you for the reply.
I don't have copies of all of the blood tests. Maybe I should get copies and have a look. I guess I could be on the low(but within range) end of the range and not ok?

No neurologist, just the genetic counselling people and a Gp.

my bowel and urine stuff this week has prompted this MS rethink. Not to mention the headache, but my stomach is very off.

I have been tested for celiacs in the past as well (also I have no dairy)

I've just booked an app for the 17th, and I'm getting all my records from the other dr I used to see 5years ago sent to the new one.

Im not sure what else I can do other than that for the mean time?
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Re: New and tired

Postby Scott1 » Mon Jan 01, 2018 10:55 pm

Hi,

Without belittling your GP, I do feel an appointment with a neurologist is warranted. There are some things that don't sound like MS,(more like an infection) but there's enough to warrant a trip to a specialist. I'm unsure what you mean by genetic counseling as it could mean many things. A good neurologist can cover some of those things as well.

GP's can be well meaning and have a lovely manner but the ultimate question is "are these people helping me?".

I'd also be testing for infections like mycoplasma and other bacteria that can be difficult to detect in both the blood and the urine.

Regards,
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Re: New and tired

Postby Vesuvi » Tue Jan 02, 2018 4:06 am

Hi, I'm getting tested for CMT, it's a peripheral neuropathy, strong family history. Maternal grandma, maternal aunts, etc my mum has never been tested so i could have it (if she doesn't have it I don't)

Yes I have booked with a new gp in my normal clinic. He seen my son last month and he was beyond thorough. I'm a bit hopeful he will get something rolling. I also booked a double appointment so I can get for that than standard time before he has to boot me out.

I have never really thought of infection as a possibility ? Can you have an infection for so long and it not be apparent?
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Re: New and tired

Postby jimmylegs » Tue Jan 02, 2018 7:27 am

hi vesuvi and welcome to the forum :)
as a vegan, are you under the care of a professional dietitian specializing in vegan nutrition? i wasn't, and can relate to so many of the experiences you describe. personally, the bloodwork i had done regularly was not designed to red flag issues specific to vegans - just b12 (and even that testing had issues, with blame to be laid on both the medical and personal sides) and nothing else.
are you able to share which nutrient specific tests (b12 and any others) you have on file, and the results?
if you don't have many nutrient specific test results and have not yet seen a dietitian, you can start keeping a diet diary. this record can be taken to a dietitian for analysis, where hopefully you can also ask for testing for some nutrients of potential concern.
there is a significant overlap between suspect nutrients for ms and for vegans. it's definitely worth investigating and ruling out deficits!! if you are able to act before any permanent damage is done, that will be the best case scenario. i didn't act quickly enough myself, but am quite happy to help others do whatever they can to avoid the same fate.
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: New and tired

Postby Scott1 » Tue Jan 02, 2018 3:06 pm

Hi,

Infections can be chronic and be both difficult to identify and treat. The rise of antibiotic resistant bacteria is one example of how they can be involved. Some are very slow to multiply and take a long time to affect you. There are travelers bugs that suddenly pop up years after the travel is completed. Some lie dormant and just take their time to create a problem whilst others appear as co-infections with another bacteria. Maybe your new GP can explore that option.

It is a pretty good argument to make probiotics part of your daily routine in any case.

Regards,
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Re: New and tired

Postby jimmylegs » Tue Jan 02, 2018 3:24 pm

i personally would suggest infection susceptibility would most likely be secondary to any nutrient insufficiencies affecting optimal immune sys function.

certain nutrients known to be low in ms patients and which can be challenging to optimize via vegan diet, also affect immune system function and vulnerability to bacterial and viral infection.

case studies suck, but still. undernourished, low zinc, infection.

A CASE OF MONONUCLEOSIS IN AN ANOREXIC PATIENT WITH ZINC DEFICIENCY
http://mattioli1885journals.com/index.p ... /view/3586
We report the case of a 24 years old women with anorexia nervosa (BMI= 14.3 Kg/m2 ) and recent infection by virus of mononucleosis. The patient had remittent fever, sore throat, hepatosplenomegaly, laterocervical lymphoadenopathy. Biochemical and serological work-out showed absolute lymphocytosis and antibodies against capsidic and nuclear Epstein-Barr virus antigens. Morover, we have found reduced serum zinc levels. This feature, in the context of anorexia nervosa, contributed to worsen the clinical picture of the concomitant viral infection.

can't get into the full text on this one. i'm curious just how low those zinc levels were!
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: New and tired

Postby Vesuvi » Fri Jan 05, 2018 6:02 am

Hello all :)
thank you for the responses!

I have been vegan since August last 2016, so a bit over a year. So symptoms have been for years and years.
Like the hand weakness, spasms etc.


I'm truly not sure what type of blood tests they were for the dietary stuff, but as it was at a gp clinic it could very well be not specific for vegans.



I think I will book with a dietitian this week and get the blood work done, I can't et my bowels moving very well and I'm drinking heaps of water, avoiding processed foods like bread and pasta, maybe twice a week, So lots of fruit and veg and my bowels are just SLOW. i was taking probiotics for a while and ran out. I will get more of them too.


I guess I want to get as much info for the GP as possible, if I can get all of the nutrient.vitamins checked and. Othing is amiss (I will get copy of the results) then if everything is clear there I'm going to slam home that we get the MRI. I have had quite a few tests looking for other things and nothing else has popped up.


Hi jimmlegs, is the nutrients you talk about, is it zinc? I'm not sure I have been tested for that?
This is all very good to me, shedding new light on it and making me rehash the previous tests and their. Relevancy to me as an individual. (Even though all of my Drs have known I'm vegan)


Will also add I have a wide variety of food, had oats and fruit for breakfast today, big salad bowl with chickpeas avacdo and hummus. And dinner was fake chicken strips with roast veggies. Similar most days.
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Re: New and tired

Postby jimmylegs » Fri Jan 05, 2018 7:16 am

if your long term symptoms are based in nutrition issues, veganism may make some aspects worse.
i'm not sure what exactly is driving your current GI problems but there are certainly many things worth investigating.
note that with nutritional bloodwork for ms everything tends to come back 'normal' but with your own copy of results you can see if you're in the 'healthy' part of normal or the 'normal for chronic illness' part of the range.
for ms and othe commom chronic illnesses it is wise to look for common insufficiencies, and cofactors that should be considered before you start messing with therapeutic supplements.
for ms patients it's wise to test and have results for serum b12, serum 25(OH)vitD3, serum magnesium, serum zinc and serum copper to start. also, serum ferritin if it's not already on file. and lastly, nice to have but not need to have, serum uric acid.
a variety of foods is great. be sure to select for nutrient density. my mistakes started early. family dinners were short on essential nutrients due to one person's dislikes. that person is no longer with us. in hindsight i was deficient in a few essentials before i ever left home. as a vegetarian then vegan my later mistakes included failure to give sufficient attention to protein, even though i know how to complete protein from veg sources. also, failure to understand and adhere to daily essential nutrient requirements for my age and gender. failure to incorporate, for example, high volume cooked dark leafy greens and daily trail mix composed of a mix of nuts and seeds known to deliver specific nutrients in higher amounts. things like pumpkin seeds need to be going in at 1/4c servings at a time, on a daily basis. when considering zinc in particular, it's far better absorbed from animal sources (eg one serving a week of oysters). vegetarians/vegans need to eat i believe it's 1.3 x more (update: 1.5 x more) of any veg source zinc food, in order to absorb and utilize a sufficient amount.
of possible interest, zinc is critical for GI health and i don't see much of it in your daily menu!
that's enough rambling for now :) gotta get to work!
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: New and tired

Postby ElliotB » Fri Jan 05, 2018 8:45 am

I suggest you do some research on lectins, which are known to cause symptoms similar to the ones you list.

Also, consider going gluten free. Gluten could also be responsible for some of your symptoms.

Also, be sure you are addressing the issue of Essential Fatty Acids (these are available through vegetable sources).

B vitamins can also improve energy level. Also consider taking high dose Biotin (also a B vitamin).

Do you get adequate sleep? Are you able to take a nap during the day?
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Re: New and tired

Postby jimmylegs » Fri Jan 05, 2018 9:29 am

luckily gluten can also be managed, without losing the multiple other benefits of foods which contain gluten.
when the soil in which wheat is grown contains enough zinc, the glutenin:gliadin ratio in the grain is less likely to trigger inflammatory immune system response.
more within our control: gluten grains can be processed in a number of known ways, to lessen gluten's impact. sourdough, sprouted flour, consuming bread with animal protein, these are some of the available strategies.
further, since gluten is a zinc anti-nutrient in particular, extra zinc can be added to the diet to help balance gluten intake.
in the past, veggie friends who've complained of gi troubles simply needed to be put on a bread ration (eg 1 slice max per day) to resolve issues. the person i'm thinking of in particular was amazed to realize how bread dependent they were and had a whole learning curve to do in order to fill up with healthy nutrient dense alternatives.
luckily, on the surface this does not appear to be the situation in your case, v!
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: New and tired

Postby Vesuvi » Fri Jan 05, 2018 11:09 pm

Hi hi jimmylegs, very well could be an issue still, I was thinking that the blood tests I got with a gp would be sufficient (until I came to this site) I really hope it's all good but kind of a bit excited as well to potentially have something that could be 'fixed' if you know what I mean?
Example if it's zinc (I do eat lots of dark chocolate, mushrooms beans, almonds etc (had a quick google to double check I was getting it lol) I can address that, and move on. I don't 'want' ms. But I have really come to the conclusion that I might have to do a lot of ground work (that Drs can't be left to their own devices)

For your second post JimmylegsX yes I could stand to reduce my intake more. I did the maths and while I 'think' I'm having it once or twice a week. I have had two prices of toast 3 times this week :/




Elliot - I will look into the for sure. sleep is horrible, I still breastfeed my son at night (he is a toddler so I can stop this if I have too ). My sleep is screwed. I wake up on the couch most mornings because I hiding from the kid. I also dream constantly (it feels like)

I'd love to take a day nap :D
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Re: New and tired

Postby jimmylegs » Sat Jan 06, 2018 7:07 am

yes the main thing i've learned about health care since my dx is that public health info is horribly misaligned with lab testing in the clinical setting. until medicine is in the habit of testing diverse nutrients on a regular basis, the only other option is diet analysis by a highly specialized nutritionist - and the research shows that doctors are slow to refer to to the appropriate professionals. especially in urban settings, where most ppl live.

breastfeeding increases nutrient demand still further, as i am sure you're aware. you don't want to mess around with the nutrient content of your child's food. there are too many sad academic publications re sick kids of parents with restrictive diets or other approaches, all done with the best intentions but insufficient essential nutrient information to make safe choices.

i am really glad you are motivated to take action! zinc will be one piece of a larger picture, but it's an excellent place to get started. by emphasizing whole food dense sources, you automatically get other good things too :D
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: New and tired

Postby jimmylegs » Sat Jan 06, 2018 7:17 am

Dietary Reference Intakes
Reference Values for Elements
http://bit.ly/2ha1MjW

daily zinc needs during lactation 12-40 mg/d

"The requirement for zinc may be as much as 50 percent greater for vegetarians, particularly for strict vegetarians whose major food staples are grains and legumes, due to the lower bioavailability of zinc from a vegetarian diet."

so you're looking for 12 x 1.5 = 18 mg at a bare minimum, probably safer to go for somewhere closer to the middle - say 30 mg/d. as much as you can from diet, top up with a high quality supplement balanced appropriately with copper. and only use a supplement if your iron status is in good shape. that will be another important one to look at. luckily many foods rich in zinc are also rich in iron.

you mentioned b12 supplements. may i ask how much and how often? i'm curious re results from any serum vit b12 bloodwork you may have on file? that's not one to mess around with, and the normal range could be far better defined than it is... definitely have learned my lesson in that dept, with irreversible nerve damage to show for it. it ticks me off to know that at one time all of this *was* reversible, but i didn't understand the seriousness of what was going on!!
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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