Losing the will and hope - 3 MONTHS ON GOING

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

Losing the will and hope - 3 MONTHS ON GOING

Postby justsomegirlindk » Tue Jan 10, 2017 9:18 am

Hi folks so let me say how glad i am to find this space.

Im Nel 25 , from the uk but living in Denmark. and for the past 3 months i've had "ms" like symptoms.Before this i've always been active (5:30am gym routine everyday , aerial artist , dancer and social butterfly)

Let me tell you my story.(apologies for any crappy grammar as such im extremely tired).


So 4/11/16 i started to experience a strange "sleepy" hand sensation , as if i had sat on it for a long period of time and it was tingly and numb.I briefly put it down to being on my laptop and off to bed i went, the next morning still strange but needless i went to school, i was 20 mins early so i thought perfect ill grab a coffee from 7/11 and head to class.I made a latte , checked my watch , and proceeded to remove said coffee with the tingly numb hand... it slipped through my hand- straight .. clean out my hand more like. I knew something was wrong.I apologied and paid for the coffee lying on the floor and left.I headed to school in a bit of a panic and called my doctor to arrange a visit.My doctor just told me to call the local health hotline and see what they said.I did .. and within a hour they recommended i saw a doctor at one of the hospitals by where my apartment is.I gathered my books and headed over there. The doctor couldn't find anything wrong , he said it wasn't a muscular pain and that i needed to see a neuro and arranged for me to visit one the next day...

the next day being a friday i got to the neuro unit and saw a doc who said she was unsure what it was but top of her list is "MS" i proceeded to say there is history of "MS" in my family (my auntie has RRMS past 30+ years). Anyhow she draws a lumbar puncture and away the fluid goes. She arranges for a MRI scan too. usual precaution of the lumbar , i went home and rested drank alot and did not much.Saturday had a quite day at home no head pain , no issues great i thought... until early hours sunday morning it started this intense head pain that hasn't really left me (ill explain more as i go on).Ok i thought this is the lumbar puncture and so i spent the day in bed.Then the real crap happened around 9pm in the evening i couldn't move anything in my body it was as if someone has strapped me to a board and i was stuck there.My boyfriend called the health hotline again and they told me to go straight to the hospitial again... so we grabbed a uber and went in.I got then transferred via ambulance to another hospital and told upon arrival "you just need a goods night sleep and here take this pinax" - so we went home , i took the pill and slept. The next day still stiff , the slightest movement gave me pain and i was super sensitive to hot and cold things... so again i spent the time in bed... sigh.

The following week i spent it going to and from the hospital everyday as they called me in for the MRI scan which never happened nor did the blood patch they promised they would do.So friday comes and finally i get the call come for the MRI , i attend have the scan and then get seen by a new doctor who tells me
"this is stress , and its all in your head , take some time out and relax" i have never been so offended or upset in my life.So i accept this ... numb hand , headache and fatigue and go home feeling deflated.My mri was "normal" they stated and my tests all appear normal.And with that i was told to go and if i was needed they would call me.
The strange feelings go on into november adding with it
* strange vision- everything appearing darker than usual
*extreme fatigue - sleeping 13+ hours a day
* numbness in left foot and odd twitching at times too.


1/12/16
still the same , no news , nothing to report everything is as above still and i just try to research what the hell is going on.

15/12/16
My birthday , i spent in bed with a horrific head pain i can only say was enough to make me want to black out my entire room and cry alot.The numb hand and arm were now causing me issues as i couldnt do anything basic like hold a knife and fork, make food and hold heavy grocery bags.I knew this is not normal

this continued on and off all over the festive season , and new year.

1/1/17
I get a mail saying can i go for a EMG scan , on the the 5th . Nothing new to report symptom wise
3/1 /17
I get this strange chest pain , i think oh god am i having a heart attack.Its like someone has a strap around my chest and they pull it super tight. It hurts alot and with that i end up in tears in bed while my helpless partner stands and watches ... he asks what he can do i reply nothing ..
4/1/17
Chest pain is still around , not as bad but surely still there and making itself known to me , headache is there too and my eyes feel like they want to give up on me.I attempted to try and go the gym , only to come home 10 mins after arriving there. Lucky enough its facing my apartment block so not too bad.
5/1/17
EMG day , 3/4 of the tests she couldn't do due to my headache still , and she did the left arm and let me go.Told me a doctor will see me on the 20th with results.

6/1/17
It's friday , the chest pain seems to have hidden itself so i try and get up to do things in the apartment , so far so good . evening comes and im exhausted so i crash around 7pm - and dont wake until the next day around 12.

the weekend i had a bad chest again .... and well headache from hell so i spent it sleeping in bed and hoping that itll all pass over.Starting to feel depressed by this point as i want to just have a good day if thats possible.

Monday - i wake up chest still giving me grief and my eyes/arm/head still not the best either.I tried to venture out and to get some basic groceries.Upon getting up the apartment stairs the chest pain hit me super bad and i nearly fell down the stairs luckily my partner saw and grabbed me before i did but the pain was soo intense.I called the neuro as soon as i got in the door.

and que to today Tuesday i saw a neuro who proceeded to tell me its IMPOSSIBLE i have ms as my mri was clear , and that i don't have anything that suggest MS no inflammation and no factors.... I argued with him for a hour about how ms can be present with no lesions , and no inflammation. He proceeded to tell me i was wrong , i said i want a mri on my spine and a mri with contrast to which he refused , i said if you know about ms and respect me you will check my scans. So he did and then he turns around and says i'll order you a MRI of the spine for within 14 days and take a ECG scan , my boyfriend sat looking at me like wow.He's never seen me be so stern on something but i'm learning i need to be my own advocate right now.Because these doctors clearly think there is nothing wrong with me and that i am going crazy..

please someone assure me im not insane ... because i slowly am starting to feel like i am. I just want a answer , or some pain medication for the headaches at least.

I have no idea what to do next now or where to turn too.

So any input or ideas would be amazing and id be ever so thankful.
Thankyou
Nel
justsomegirlindk
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Re: Losing the will and hope - 3 MONTHS ON GOING

Postby jimmylegs » Tue Jan 10, 2017 12:41 pm

hi and welcome to TiMS, nel :)
i'll refer you to some relevant recent posts. first:

post245230.html#p245230
key points from the above: "... it is your responsibility to make sure you are meeting public health recommendations on a day to day basis. if you need help, perhaps you can ask for a referral to a nutritionist. he or she should be able to pick up on any issues and steer you in the right direction. three day diet diaries often provide a reasonably clear picture of the status quo, and pick up on where improvements can be made.

public health departments know people do not eat enough healthy foods to meet day to day minimum essential nutrient requirements. societally, the prevalence of chronic disease bears this out. meanwhile at the doc's office, clinical tests of nutrient status aren't set up to detect milder deficits, only more severe deficiency"

that last is a reasonable candidate explanation re why the docs aren't picking anything up with their test results. similarly, if testing for ms specifically, they are not likely to find those key pieces until things go on for long enough (we are talking 'chronic' disease after all) to manifest 'properly'. it's quite the reactive style of medicine imho.
more pending. headache info in particular, since i know from personal xp what that brand of hell is like
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Losing the will and hope - 3 MONTHS ON GOING

Postby jimmylegs » Tue Jan 10, 2017 12:45 pm

wow i thought if i put 'lumbar' in the search terms i would get something recent. still relevant but from 2014:
search.php?keywords=lumbar&terms=all&author=jimmylegs

this set of search results has the latest relevant post, plus associated stuff from 2013:
search.php?keywords=bevel&terms=all&author=jimmylegs
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Losing the will and hope - 3 MONTHS ON GOING

Postby jimmylegs » Tue Jan 10, 2017 12:53 pm

because you are active, these related forum search results:
search.php?keywords=athlet*&terms=all&author=jimmylegs

worst case scenario, dealing with the nutrition question reassures you that you are doing everything perfectly in terms of caring for your body's essential macro and micro nutrient requirements. more likely, you'll find some action items and potential associated improvements.

mainstream medicine dabbles in the nutritional aspects of health a little, but needs to spend more time on it. hence the suggestion in the linked post to visit nutritionist for now (which i put forward with a grain of salt, having received some rather nonsense dietary suggestions from my own naturopathic doctor some yrs back)

happy reading! i am sure others will chime in. any questions, fire away. and stay lying down as much as poss while you are still suffering with that headache.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Losing the will and hope - 3 MONTHS ON GOING

Postby Scott1 » Tue Jan 10, 2017 3:17 pm

Hi,

What a pickle. You go from super healthy to this state and they tell you it's all in your head. Those people aren't going to help you. They think MS is just a demylinating disease so that's what they look for. You are not being thoroughly investigated. Pay attention to Jimmylegs suggestions about nutritional deficiencies but bear in mind this has happened very very quickly which is how infection hits you.


Get out of this circle of medical advisors, take any reports they have given you and show them to a new group so you don't waste time repeating the same work.

It does worry me that you have chest pain and sleep so long yet are still fatigued. Have you seen a cardiologist, had any heart scans or blood pressure tests? Also get a uric acid test and see if you are below the bottom of the reference range.

My guess, without knowing why it is happening, is you are using energy faster than you can make it in a continuing downward spiral.

What I do for this aspect (and it doesn't have to be just for MS) is do the following-

In the morning

2000mg aceytl-l-carnitine
1 dose curcumin (per the label)
1 magnesium tablet (per the label)

at night
2000mg aceytl-l-carnitine
1 dose curcumin (per the label)
1 magnesium (per the label)
700mg Coenzyeme Q10

You might be better spreading the Q10 across the day and adding an extra magnesium at midday.

The Q10 should be a gel capsule that contains d-alpha-tocopherol (Vit E). Ask for a practioner brand not the cheapest brand as quality varies. An alternative is MitoQ but is only has antioxidant properties whereas Q10 forms part of the electron transport chain. (You are also a long way from New Zealand where it is made). They say it is more readily absorbed so you need less. I 'd also rather start with Q10.
A relatively easy reference to read is Metabolic Cardiology: The Sinatra Solution by Stephen Sinatra.

I have no idea what is causing your symptoms but listen to them. You current doctors aren't. They have very fixed views and sound like they have stopped listening and looking. Do get a through test for your heart.

Regards,
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Re: Losing the will and hope - 3 MONTHS ON GOING

Postby jimmylegs » Tue Jan 10, 2017 3:51 pm

hi again, if infection is in fact a concern you could also consider these recent related research titles (and these few barely break the meniscus of the surface, never mind scratching it.. there's loads of older stuff to look at as well):

Western diet induces a shift in microbiota composition enhancing susceptibility to Adherent-Invasive E. coli infection and intestinal inflammation. (2016)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705701/

Infection Susceptibility in Gastric Intrinsic Factor (Vitamin B12)-Defective Mice Is Subject to Maternal Influences (2016)
http://mbio.asm.org/content/7/3/e00830-16.short

Dietary Selenium in Adjuvant Therapy of Viral and Bacterial Infections (2015)
http://advances.nutrition.org/content/6/1/73.full.pdf (talking HIV, Ebola, nbd - love the related research out there showing that mortality in HIV patients correlates to Se status)

Iron deficiency and susceptibility to infections: evaluation of the clinical evidence (2013)
http://link.springer.com/article/10.100 ... 013-1877-x
"The limited available evidence suggests that individuals with iron deficiency and those with iron deficiency anemia may be more susceptible to infections than patients with normal iron status."

would be quite interesting at some point to go through the essential micronutrients from A to Z and see what the lit has to say about the role of each in susceptibility to infection.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Losing the will and hope - 3 MONTHS ON GOING

Postby justsomegirlindk » Tue Jan 10, 2017 4:48 pm

Thanks Jimmy -
i currently have a diet based around paleo , as im already lactose intol, and have severe ibs-d which still hasn't changed
I upped my B12 , i saw no major signs of improvement and also upped my vitamin d and with no major signs also.
Have been taking kombucha and fermented veggies regularly again to no effect too.

Thanks Scott1 -
Indeed i have a ECG/heart scan today totally "normal" the doc said ... bloods and things come back fine showing no signs of change or inflaming or even illness which again throws a rock to what it could be.
and tell me about it im sleeping alot due to the pain i think , my hydration levels are 100% also (100+oz of water a day) and as i said before ive gone from being active and outgoing to bed bound , in pain and unable to shake this numb feeling from my left side regardless of what i do or think.Bp is normal also from the doctors tell me but then it i think they would tell me anything right now to get me outta there.

Contacting a private neuro in the uk come monday and will maybe fly home and see what they think if i can.
thanks for all the info!
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Re: Losing the will and hope - 3 MONTHS ON GOING

Postby Scott1 » Tue Jan 10, 2017 5:46 pm

Hi,

A single test at a point in time doesn't tell you much for blood pressure. Neither does the word "normal". I would have read as normal till two chambers of my heart just stopped. There was nothing wrong with any measurements until that happened. Wear a Holter monitor for 24 hours for a meaningful result and do see a different group of medical advisors. Your last sentence is the best idea.

Regards,
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Re: Losing the will and hope - 3 MONTHS ON GOING

Postby jimmylegs » Tue Jan 10, 2017 7:29 pm

hi nel, the other dx details are telling, good info. do you know how many mgs of zinc you are getting each day from food and supplements? do you have a serum zinc result on file? paleo diet should be helping to reduce dietary impacts on zinc status (more about that below), so that's good. however, will unpack zinc a bit further. don't have a huge list of good human studies to share, but here's what i can find that may apply in your case:

1) in zinc deficient rats, intestinal lactase is reduced

Effects of Short-Term Isolated Zinc Deficiency on Intestinal Growth and Activities of Several Brush Border Enzymes in Weanling Rats
http://www.nature.com/pr/journal/v19/n1 ... ion_detail
" To determine whether zinc has a specific role on intestinal growth and function, three groups of male weanling Sprague-Dawley rats were fed a semipurified zinc-deficient diet: ad libitum fed group received powdered diet and water containing 25 ppm of zinc; force fed (ZN, ZD) groups were fed identical amounts of diet to the ad libitum fed group by intragastric infusion three times per day. The diets were aqueous suspensions made with either deionized water (ZD) or water containing 25 ppm of zinc (ZN), and additional drinking water with (ZN) or without zinc (ZD) was offered ad libitum. Rats were sacrificed after 8 days of feeding. The ZD group showed growth arrest, perioral and periorbital dermal lesions, and abdominal distention within 8 days of feeding. Mucosal DNA, protein, sucrase, maltase, lactase, leucine aminopeptidase, and alkaline phosphatase were significantly decreased in the ZD group, whereas intestinal length, weight, and mucosal weight were unaltered. These results suggest that short-term isolated zinc deficiency impairs growth, digestion, and absorption in the rat small intestine, even in the absence of associated protein calorie malnutrition. "

2) case study: little girl with multiple dietary intolerances recovers after zinc therapy

Zinc Deficiency in Acrodermatitis Enteropathica: Multiple Dietary Intolerance Treated with Synthetic Diet
https://www.ncbi.nlm.nih.gov/pmc/articl ... 5-0039.pdf
"First admission (aged 2 months): Widespread skin eruptIon typical of acrodermatitis enteropathica. A five-day course of biotin (10 mg daily) had no effect on her skin. Shortly after admission she developed a persistent watery diarrhoea due to lactose intolerance
Second admission (aged 11 to 15 months): Considerable difficulty was encountered both in the management of her diet and control of skin lesions. Disaccharide intolerance was again demonstrated.
Investigations: Plasma zinc 35 ,ug/100 ml (normal range 70-170 ug/100 ml).

After the demonstration of a dietary deficiency of zinc and very low plasma zinc levels, she was discharged home on her synthetic diet, vitamin and mineral supplements, zinc supplements (3 mg elemental zinc as zinc sulphate) and Diodoquin 9.6 g daily, her skin lesions slowly healing.
Subsequent progress: One month later, skin lesions completely healed, total alopecia, plasma zinc 97 ,tg/100 ml. After a further six weeks, hair began to grow, skin remained normal. Plasma zinc 168,utg/100 ml.
Fourth admission (aged 25 months): Had been tolerating ice-cream, spaghetti and bread at home. Skin normal, hair growing. Weaned on to full normal toddler diet without ill effects. Plasma zinc 148 ftg/100 ml. All mineral and vitamin supplements stopped.
Comment
...Zinc is quantitatively the second most important micronutrient with a total body content about half that of iron
Postscript (9.3.73): After progressing very satisfactorily for several weeks our patient relapsed and the skin lesions returned. It was found that the zinc supplement had been inadvertently omitted for several days and reintroduction of the zinc supplement once again led to prompt return to normal. A factor worth bearing in mind is the high content of ceteals in the average Italian diet."

re conflict btw zinc and spaghetti, bread etc, the above may all ring pretty true from the paleo perspective; a diet low on grains would be helping to mitigate issues associated with low zinc status.

3) patients with IBS have low normal zinc levels compared to healthy controls

found some grown up human patients. only 32 (plus 32 controls), but better than the above. low zinc in cases of IBS:

The relationship between serum trace element levels and clinical parameters in patients with fibromyalgia
http://bit.ly/2j3tQVm
The demographic features, disease duration and accompanying symptoms (e.g., fatigue, morning stiffness, depression, sleep disturbances, paresthesias, headache, irritable bowel syndrome, Raynoud’s-like symptoms and restless leg syndrome) of the patients were documented.
"In this study, serum magnesium and zinc levels were found significantly lower in patients with FM when compared to NHC"
too bad their column headers are messed up in table 3, showing higher zinc and mag levels in FM. >:| come on, peer review crew...
so from table 3 (corrected)
serum zinc level (g/dL) mean (SD)
patients........................77.2 (31)
healthy controls...........102.8 (24.7)

recall that normal range above (70-170 ug/100 ml)

so if anyone has ever run a serum zinc test for you, i will be very interested to hear if you have the result on file. you generally want to be at the top of these ranges. often results can come in low normal and patients won't receive advice to improve status. also, different labs use different ranges so you can be normal at one and deficient at the next.

if you don't already have a result on file, or ready access to a serum zinc test, you can fake it with over the counter products to do a zinc taste test. ability to taste zinc (or lack thereof) correlates to serum zinc level: http://www.ijpp.com/IJPP%20archives/199 ... 18-322.pdf
if you find some of these:
http://www.quantumhealth.com/collection ... -raspberry
and they taste like you'd expect, sweet and berry-like, then you need zinc.
yes they are chalky, it's not the texture that determines your status. basically if you eat them for a few days according to directions, eventually they start to taste metallic. that is when they are working :) you start to taste the zinc. once you don't like them any more, that's when it's time to focus on meeting daily requirements from food and if needed, oral supplements of the non-lozenge variety.

healthy high zinc food chart: http://www.whfoods.com/genpage.php?tnam ... #foodchart
if you find yourself in the market for an oral zinc supplement, you'll need to find one which correctly balances zinc and copper, and also be aware of the impact of zinc supplements on iron status. it's a balancing act!!

to bring this all back to your present situation, zinc is required for wound healing. if you have a standard killer post LP headache, it is the puncture in your spinal cord that is letting CSF leak out, and the change in pressure causes the ferocious pain. not enough zinc, hole in spinal cord doesn't heal.

i had the brutal post LP headache too, and had to do total bed rest for days to get the hole to heal. because i did not know anything about zinc at the time, and didn't ask for the test, i didn't find until a year or two later how zinc deficient i had been ( 56 ug/dl ) :(
all fixed now!!

hopefully something in all of that is useful :D
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm


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