Hi - Need reassurance? I've tried every other disease! :P

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Hi - Need reassurance? I've tried every other disease! :P

Postby midnight » Tue Aug 07, 2012 8:04 am

Hi,

I'm really at the end of my tether with my health - to be honest, for the past few months I've been avoiding the GP etc because it's just an endless mess....and some days I begin to think it must all be in my head :sad:

I'm a 25 yr old mum of three..my doctors and I have run from early onset COPD to Lupus to... a sort of dead end of nothing.

Along the medical journey of the last two years I have been officially diagnosed with:

Alopecia areata (I go bald on and off)

Raynaud's phenomenon (if I get cold/stressed/upset my hands and feet go completely numb, turn white, then go bright red sometimes hours later - then tingle for hours and hours. Sometimes I get pins and needles in weird places for no reason)

Ehler's Danlos syndrome - my joints badly subluxate, wobble and dislocate - I have throughout my life dislocated nearly every joint in my body 8O - my right shoulder is the worst for frequency, but the ankles are the most horrible. I have to use a walking stick, no one is treating me for this because the joyous UK NHS forgot about me.

Endometriosis (oh, fun times!)

Unconnected: severe post natal depression 4 years ago.

My unanswered symptoms are:

Being highly vulnerable to sunlight (I'm a vampire basically :oops: ) I get hives in the sun. Have to wear factor 50. I also burn at the drop of a hat. Hot weather also makes me feel incredibly fatigued/ill.

Fatigue!!! Quite often. So tired. Sometimes I just have to sleep. It just happens whether I want it to or not. My brain turns to mush and my words slur.

Fibromyalgia type pain - like having massively over exercised the day before - all I need to do is bend over oddly the day before and I will feel that I've done 500 sit ups. I used to be an exercise nut - not any more :sad: my legs and upper arms are the worst. I get swelling and tenderness too.

Strange skin rashes on my face and chest. Including like little hard white spots that I just can't help but squeeze and then get infected (sigh!) and the 'Lupus' rash - a redness across my cheeks and nose, esp in the sun. (For some reason my docs are most interested in this and have sent me to a dermatologist. Rather than anyone else!!!!!)

A 7 month chest infection, which was very serious - I was diagnosed with early onset COPD due to it, then undiagnosed and diagnosed with Lupus Pneumonitis, then undiagnosed due to a negative ANA test. It's not asthma. They don't know what it is - I suffer very badly with recurring chest infections (but this was the worst) and I have 70% of the lung capacity I should (no one knows why). Xrays clear. They're gradually getting worse and terrifying me.

Recurring muscle cramps - usually calves and feet but sometimes all the way up to my bum! And around my chest. I thought at first it was my rib cage wobbling due to joint condition but I think it's purely muscular. It's intensely painful - usually brought on my laughing/sneezing/coughing (great with a chest infection!!!) it passes quite quickly, maybe 5 minutes, but it's agony. All I can do is gasp for breath and frantically rub at myself, it feels like a mixture between an intense tightness and the feeling of my muscle ripping apart.

Blurry vision that comes and goes, spots and stars in my vision - light twinkling white lights, that come and go.

Shaking hands and arms. Sometimes my hands twitch and I end up cutting a finger with a nail from my other finger because they just twitch off on their own, I just scratched my own face earlier instead of brushing my hair over my ear (I need to trim my nails obviously!!!!) When I'm overtired my hands shake uncontrollably, and sometimes even jerk around. Jerky body movements - sometimes when I'm walking my legs don't seem to quite do what I want and I'm a bit shambolic :oops:

Vertigo and dizziness - to the point of being accused of being drunk when I went to pick up my daughter from nursery once :sad:

Sometimes my jaw jerks and I spit a little by accident :oops: sometimes it feels like there's something stopping me swallowing properly.

IBS - it's either all one kind of not good, or the other!!!!!!

This last one is weird - recurring mastitis - 2 weeks prior to my period my breasts swell up three sizes and I can't bear them being touched, they go red hot too. It's horrendous.


****

When I look at the list, it all seems so huge. I've already struggled so much to get my doctors to listen, and once the Lupus was wiped off the slate with the tests they've decided due to my past of post natal depression that it must be all in my head. Sometimes I begin to think it is :confused: but then I think...there's no way I could have all these obviously physical symptoms...!!!

Does anyone have any advice on getting my GP to listen? I'm afraid to even go right now. I had a nurse at a drop in centre accuse me of having Münchhausen's after reading my notes (not by proxy, for myself!!) she ordered an NHS taxi to take me for a psych review, but a locum GP stood up for me (she said panic attack and that I was clearly nuts, we said it was part of my lung problem and I needed a nebuliser) I've just...become really afraid of ending up in a psych ward!!!!!!

Not sure what to do, where to go, I was convinved it was Lupus, but now I'm worried it doesn't quite fit, and if it doesn't...well where do I go from here? My quality of life is getting pretty low, and I'm trying really hard to look after my kids and get on with getting on...

Thanks if you got to the end 8O
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Tue Aug 07, 2012 9:52 am

welcome, and no worries, got your back. you had me at 25 and mom of three.

The Risk of Maternal Nutritional Depletion and Poor Outcomes Increases in Early or Closely Spaced Pregnancies
http://naldc.nal.usda.gov/download/2892/PDF

maybe think about asking for a zinc test. and magnesium. the red flags are all over your post. i'll link you up with some posts i've made for others on similar topics.

for now, if you're interested, check out the first post in my regimen thread for some basic info:
regimens-f22/topic2489.html#p15460
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby midnight » Tue Aug 07, 2012 10:14 am

The diet and supplement regimen look really interesting. Do you think it's just deficiencies, or do you think deficiencies are part of MS?

I was tested for iron, and they did some others too about a year ago. They don't let you see your results in the UK. Just tell you if you're ok/not... so that's a pita!

Thanks so much for responding - I will look at the pdf bit I'm on my phone atm
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Tue Aug 07, 2012 11:50 am

i actually do think it's just patient deficiencies layered on top of genetic predispositions (and possibly maternal deficiencies as well). physical injuries can play a role also. arg you're in the UK (whereabouts by the way?) - i noticed that private testing is stupid expensive over there, at least from the sources i've seen to date.

a 'little' more info:

happy ending to a 2-page story by a mom of three
general-discussion-f1/topic19575-15.html#p193710
(may as well read whole thing, it's good info)

me in 2011: general-discussion-f1/topic16211.html#p161093
ps. my boss lost so much hair a couple years back that in the end, she shaved her head. i was going on as usual about supplements for this and that, and when i finally said fertility for zinc she took notice. started taking zinc (and magnesium which eliminates monthly cramping and reduces stress). long (successful) baby story aside, she now also has a full head of hair again

per NHE in 2009: post61076.html?hilit=raynaud*#p61076
Also consider that taking vitamin D3 with calcium, magnesium, and zinc can be helpful. I take a supplement which combines these last four ingredients and coincidentally found that it seems to have halted my symptoms of Raynaud's syndrome that I was having. I can't prove cause and effect (I suppose I could go off the supplements and see if the Raynaud's returns but that's not something I wish to do).

me in 2012: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19914.html#p191611
A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19807.html#p190867

EDS diet info (w caveat re food elimination diets)
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19807.html#p190869

question: have you had any of these levels checked?:
serum zinc, copper, calcium, magnesium, 25(OH)cholecalciferol, vitamin K, ferritin.


Endometriosis and deficient intake of antioxidants molecules related to peripheral and peritoneal oxidative stress
http://new.medigraphic.com/cgi-bin/resu ... CULO=14678
...The antioxidant intake (vitamin C, vitamin E, selenium and zinc) of women with endometriosis showed a significative statistical difference when data was compared with the control group... The antioxidant intake in women with endometriosis showed an inverse correlation with the pathology intensity. As endometriosis severity intensifies, a [lower] intake of antioxidants is present.

Zinc and depression. An update
http://www.ncbi.nlm.nih.gov/pubmed/16382189
Clinical observations demonstrated serum hypozincemia in depression, which was normalized by effective antidepressant treatment. Moreover, our preliminary clinical study demonstrated the benefit of zinc supplementation in antidepressant therapy. All the data indicate the important role of zinc homeostasis in psychopathology and therapy of depression and potential clinical antidepressant activity of this ion.


and (copied from general-discussion-f1/topic19716.html#p190138)
Zinc and copper in pregnancy, correlations to fetal and maternal complications
http://www.ncbi.nlm.nih.gov/pubmed/1067748
Serum zinc and serum copper concentrations during early pregnancy in 84 consecutive primigravidae were correlated to other haematological factors and were also correlated to complications of labour and/or complications affecting the infant. ...One infant showed a congenital heart defect (ventricular septum defect and preductal coarctation of aorta). Her mother showed the lowest serum zinc concentration recorded in the 13th week, but no other abnormal findings. Compared to women with abnormal labours and/or immature infants, mothers with normal deliveries and normal deliveries and normal infants showed significantly higher serum zinc values (p less than 0.001) and significantly lower serum copper concentrations (p less than 0.025) during early pregnancy. A notably high incidence of complications affecting mothers and infants has been recorded among women with low serum zinc. Similarities to effects of experimental zinc deficiency in animals are striking. If (jl: hah!) a low serum zinc reflects a state of deficiency, and this seems to be the case, zinc deficiency is probably common.

taking me a bit longer to put together sun/hives info.. skip for now

brain-mush word-slur - on zinc and cognition

Effects of repletion with zinc and other micronutrients on neuropsychologic performance...
http://www.ncbi.nlm.nih.gov/pubmed/17010236
Neuropsychologic performance and growth were most improved after treatment with ZM.
(zinc and micronutrient combo)

Lower serum zinc in Chronic Fatigue Syndrome (CFS)...
http://www.ncbi.nlm.nih.gov/pubmed/16338007
We found that serum zinc was significantly lower in the CFS patients than in the normal controls... There was a trend toward a significant negative correlation
between serum zinc and the severity of CFS and there was a significant and negative correlation between serum zinc and the subjective experience of infection. ... patients with CFS should be treated with specific antioxidants, including zinc supplements

Levels of Magnesium, Zinc, Calcium and Copper in Serum of Patients with Fibromyalgia Syndrome
http://www.iasj.net/iasj?func=fulltext&aId=42868
The levels of Mg, Zn, Ca concentrations in serum of patients with FMS were significantly lower than healthy control subjects, while Cu concentration in patients with FMS was significantly higher than healthy control subjects ... levels of Mg, Zn, Ca and Cu may be a good indicator to evaluate this disease.

and you mentioned having been an exercise nut.. recently sent this to a friend, she managed to get some tests, i put her on a regimen, she did it, problem (amenorrhea) solved. her doc says it's a coincidence. :roll: riiight...

Energy and nutrient status of amenorrheic athletes participating in a diet and exercise training intervention program.
http://www.cabdirect.org/abstracts/1999 ... 172B9B7A99

jewels70 in 2012: general-discussion-f1/topic20461.html#p195590
I don't think you are too far off with just eating right and supplementing. ... Our bodies need what nature provides. Unfortunately it's too easy to eat bad and many if us give in to our cravings ... I was exercising, P90x or insanity workouts, for the last few years. Not religiously but I've done the whole 90 days maybe missing two days. Then I took a break. Got sick, with shingles, that that was about 2 1/2 years ago.

Zinc and the skin.
http://www.ncbi.nlm.nih.gov/pubmed/6348687
Zinc is an essential trace element integrally involved in a wide range of metabolic processes required for tissue growth and repair as well as being necessary for maintaining host defences. Zinc deficiency can occur from lack of adequate dietary intake, decreased intestinal absorption, and increased losses in the gastrointestinal tract, urine, and sweat. The clinical signs of zinc deficiency can present in a florid manner with dermatitis, alopecia, and diarrhea, or they can be chronic changes with dwarfism and hypogonadism or, the signs may be barely perceptible with low growth rates and hypogeusia. As with all nutritional deficiencies, the possibility of its existence must be considered before the diagnosis can be made. It is not known how severe zinc deficiency must be or how long it has to be present before the characteristic rash appears. However, as biochemical changes of zinc deficiency occur before any clinical changes do, it is likely that metabolic processes have been affected before the rash heralds the presence of zinc deficiency.

okay i'm going to stop with the science now, i can find it but have spent too much time on this already! re the infection, we've already touched on zinc and i've posted on the links between zinc and infection elsewhere (see above re chronic fatigue, zinc and infection links, plus recent posts on c. difficile etc), magnesium for the muscle cramps, shaking, vertigo, dysphagia say zinc and mag too, IBS points to zinc (ask PointsNorth about xp taking zinc for crohn's, which he used to have... no longer!), and without doing any hunting i'm leaning toward zinc for the mastitis too.

so. as for it being in your head, they're just blaming the patient for their own failure

anyway, nutrition can change how you are in the world so even if it was "all in your head", you could probably treat that too.

me in 2012: general-discussion-f1/topic19623.html#p189436
a couple years ago, i suggested my boss take magnesium to prevent menstrual cramping and she came to me later and asked if it could make her feel more calm. answer, yes. she commented to me a few months ago that it had really surprised her that the anxiety she had thought was just her basic personality, was actually a nutrient deficiency.

as for convincing the GP, well you could think about taking the science i've copied to you, printing out the abstracts, and putting the published peer-reviewed facts in front of the doc, as rationale for zinc and mag testing. then, you could show the info on the 'normal' range and the targets established in research for healthy controls, found in the first post of my regimen thread.

if you want to avoid the doc, depending where you are you can just order a requisition online and go pay for the test at the lab.

if that's not an option for whatever reason, you can just start looking at possible gaps in your diet and making some adjustments, and considering a couple of supplements. i pay about $11 for a bottle of zinc and just under $20 for a really good magnesium product. cheap experiment you can run without the doc in the picture at all. although, testing is better.

lots of info, hope it's useful to you :)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Tue Aug 07, 2012 12:14 pm

normally my doc's office only does the normal-or-not answer as well, but they know better with me.

i was thinking, if you show the doc 'healthy control' targets for nutrient levels, backed up with science, maybe they would switch from the status quo 'normal' range ok/not, to an answer based on a much tighter 'healthy control' range, defined by more rigorous scientific info, provided by you.

and, could you possibly request copies of your lab results for your own files?
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby lyndacarol » Tue Aug 07, 2012 6:54 pm

Welcome to our community, midnight – Most, if not all, of the conditions you describe seem to be in the category of "autoimmune disease," as is MS. (According to the American Autoimmune Related Diseases Association more than 80 diseases have been identified as such; one of their researchers, Noel Rose, M.D., has written of The Common Thread http://www.aarda.org/infocus_article.php?ID=28

Even "hives in the sun" and other rashes and skin problems might be chronic urticaria, an inflammatory disease.

At the very least, your problem is NOT in your head!!! If your current medical team is uncooperative, find a new one. I suggest that you find a GP or internist, or even a D.O., with whom you are comfortable, who is compassionate and who enjoys being a "disease detective." He can order the tests necessary to rule out some possibilities. Start again at the beginning with a thorough physical, baseline examination including blood tests for your cortisol level (elevated with stress), glucose AND insulin levels (these are two DIFFERENT tests), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, CRP (C-reactive protein) test (indicating inflammation). Ask for a copy of all your test results for your own file (Is it really possible that you cannot get a copy of YOUR OWN TEST RESULTS in the UK?!! This amazes me.) .

From this day forward, I encourage you to eat a healthy diet (a good idea whatever your problem). Many people find that diet can influence the symptoms of MS; I believe it can help many conditions. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar) – in all forms sugar is toxic –, remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production.), all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. I think that Fatty Liver Disease is also involved, since visceral fat secretes cytokines, which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).
All the best to you.
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby midnight » Thu Aug 09, 2012 10:00 am

Wow thanks, sorry for my delay in coming back I've been struggling with a severe cramp that's running up the entire side of my body :cry:

I'm going to take my husband to the GP with me next week when he has time off, to help validate the whole thing and make sure they know I'm not mad..

I live in Liverpool at the moment - We don't get printed out results - what happens in the UK is if your GP at your ordinary doctor's clinic (office) orders tests you get given a sheet of paper with the bag for the vials attached and the list of tests on the reverse and you have to go find a blood clinic (they don't take blood at GPs, in fact I'm beginning to wonder what national health service GPs are actually for!!!) you hand it in at the clinic, they stab you, they take it away, you go home, then your GP clinic receptionist calls you in 2-4 weeks (or they forget and you badger them) and just say 'all clear' or 'you have to come in and see your GP' who sits there and tells you something vague and refers you to someone. They must have the actual results on their computer system though - so I should be able to ask??I wouldn't be surprised if it just says 'HIGH' or 'LOW' on their screens though with our wonderful health service :roll: ! Asking for results is not something we often do here!!! I'd be regarded as very odd if I tried!

I think it's easier to get your results in an inpatient hospital setting - where you have access to your folder with your notes in..

Thanks Jimmylegs for your amazingly in depth reply - this is going to sound a bit argh, but I HATE taking pills (which is good really as my docs seem to be forgetting to actually TRY to medicate me in any way!) as they get stuck in my throat badly unless they're capsules... would I be able to achieve all the correct vit/min levels through food? I just made a massive list of food sources of zinc, magnesium, potassium, Vit D, B12 and B6....some of the lists are quite small though, like the vit D! Swordfish! 8O

I've been advised to change GP before as they've failed to diagnose some serious things (about two years ago I had glandular fever and ended up in a bad way with a bone infection in my skull from secondary parotitis - I went 5 times to the doctor and they just said 'you have a sore throat! Get over it!' :roll: ...unfortunately I live in a bad area, and don't drive - the other surgeries are full and not taking on new patients... I don't really know, it's a toss up between not actually being able to shuffle there on my bad days or finding a good doctor who might be a long way away!
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Thu Aug 09, 2012 3:19 pm

oh that cramp sounds nasty - have your hubby get you some epsom salts (magnesium sulfate) so you can start soaking out those cramps. that way you can get around your pill issue in the short term. i used to hate pills too, you'll probably be able to work through that over time.

in canada, status quo bloodwork is quite similar to what you describe - we get a requisition form from the doc, sometimes you can get the blood taken there, sometimes (like me, i need the butterfly needle) you have to go to an outside lab. the doc gets the results, and if you don't hear anything it's supposedly all fine.

however, the data exists, and i've requested and obtained the results from my doc and neuro, even have my mri scans on cd. they might make you pay per page for lab tests though. do ask to see their screens and just have a notepad and pencil handy :)

back to the pills and food - short answer, no i don't think correcting levels (once the wheels have come off to the extent yours have) is achievable by diet alone. i do think it's extremely important to do all you can with food, (because you can supplement all day and actually counteract them with the wrong food choices). also, be sure to measure how well it's working in the lab, make sure you understand the 'normal' results and your real targets within that range, and then do the rest with therapeutic megadoses of the relevant nutrients. once you're topped up again, then you could think about going back to healthy whole food, ensuring regular bloodwork so that you know when it's time for a boost with the supplements.

if you're looking for a new doc, take the one that's good and far, and just get determined about getting healthy enough to get there, and beyond :)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby lyndacarol » Thu Aug 09, 2012 7:11 pm

.
midnight wrote:Wow thanks, sorry for my delay in coming back I've been struggling with a severe cramp that's running up the entire side of my body :cry:

I'm going to take my husband to the GP with me next week when he has time off, to help validate the whole thing and make sure they know I'm not mad..

I live in Liverpool at the moment - We don't get printed out results - what happens in the UK is if your GP at your ordinary doctor's clinic (office) orders tests you get given a sheet of paper with the bag for the vials attached and the list of tests on the reverse and you have to go find a blood clinic (they don't take blood at GPs, in fact I'm beginning to wonder what national health service GPs are actually for!!!) you hand it in at the clinic, they stab you, they take it away, you go home, then your GP clinic receptionist calls you in 2-4 weeks (or they forget and you badger them) and just say 'all clear' or 'you have to come in and see your GP' who sits there and tells you something vague and refers you to someone. They must have the actual results on their computer system though - so I should be able to ask??I wouldn't be surprised if it just says 'HIGH' or 'LOW' on their screens though with our wonderful health service :roll: ! Asking for results is not something we often do here!!! I'd be regarded as very odd if I tried!

I think it's easier to get your results in an inpatient hospital setting - where you have access to your folder with your notes in..

Thanks Jimmylegs for your amazingly in depth reply - this is going to sound a bit argh, but I HATE taking pills (which is good really as my docs seem to be forgetting to actually TRY to medicate me in any way!) as they get stuck in my throat badly unless they're capsules... would I be able to achieve all the correct vit/min levels through food? I just made a massive list of food sources of zinc, magnesium, potassium, Vit D, B12 and B6....some of the lists are quite small though, like the vit D! Swordfish! 8O

I've been advised to change GP before as they've failed to diagnose some serious things (about two years ago I had glandular fever and ended up in a bad way with a bone infection in my skull from secondary parotitis - I went 5 times to the doctor and they just said 'you have a sore throat! Get over it!' :roll: ...unfortunately I live in a bad area, and don't drive - the other surgeries are full and not taking on new patients... I don't really know, it's a toss up between not actually being able to shuffle there on my bad days or finding a good doctor who might be a long way away!

midnight – Jimmylegs has a good suggestion for your severe muscle cramps: soaking in a warm Epsom salts bath. The magnesium sulfate in Epsom salts can be absorbed through the skin. NOT necessary to swallow a pill!

Also, the human body can make vitamin D from sunlight falling on the skin. About 10-15 minutes of midday sun every other day is adequate for the perfect dose. Once again, NOT necessary to swallow a pill! If you are going to take a vitamin D3 supplement pill, it is a good idea to test for vitamin D3 before you just start throwing them down.

I think it is a good idea for your husband to accompany you to your doctor's appointment. My husband always goes along with me; he can help me remember topics we discussed; he thinks of good questions to ask. Some doctors patronize women, but give more serious consideration to a man there.

About your lab test results… Jimmylegs suggested that you ask to see the computer screen and write them down. Everyone seems to carry a cell phone with a camera these days (not me); I wonder if it would work to take a picture of the screen.

Some doctors say food today is deficient in vitamins and minerals because our modern agricultural practices have depleted the soil – I am not sure yet if I believe that.
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Fri Aug 10, 2012 5:13 am

oh lc, on that note, i fully believe that food nutrition is not what it used to be. it's published research, though i'd have to go looking if i wanted to find a study that measured differences in nutrient content. anyway, hence my personal focus on organic whole foods, grown the old slow way with fields left fallow rather than used continuously, and compost and manure inputs (way more diverse nutrition compared to chemicals).

i had a friend, we always debated whether food was enough. i had the experience of doing the food-only thing as a vegan, with disastrous results. i never could convince my buddy to really look hard at the nutritional imbalances associated with epilepsy. he always had seizures after alcohol, which we know is a nutrient depleter but in his view, it just canceled out the anti-seizure drugs and had nothing to do with nutrient levels. he was a dietetic technician with a major food focus, and even he agreed when i countered with the nutrient depletion associated with modern food industrialization. however, if he ever did get bloodwork done i never heard about it, and as of last week he died of a seizure combined with a heart attack. totally preventable and i'm heartbroken at the loss of my friend.

as for the sunshine thing, you have to have adequate zinc status to metabolize vit d3 properly, and you can get zinc oxide in a cream too - penaten, zinc oxide 18%. i just learned that vitamin e assists with zinc retention, so you could consider eating raw sunflower seeds and using sunflower seed oil for salad dressing etc (it's an omega 6 oil though, so you have to balance with flax seeds and flax oil to get the omega 3 in the picture. i wouldn't recommend vitamin e lotion since i suspect they'd just use alpha tocopherol, not the full e8-complex.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby midnight » Fri Aug 10, 2012 6:28 am

I have Epsom salts! I'll try them, thanks! I'll try anything, it's horrible.

I'm allergic to the sun so I can't really get the vit D naturally...I have to wear factor 50-60 in the sun (which stops you absorbing vit D, right?), but tbh it barely ever shines here anyway lol... I'm looking at the health food store for supplements now..!

I'm extreeeeemely needle and vein phobic so this regular testing for levels thing (and getting the results!) is going to be an interesting battle on three fronts - getting the doc to want to do them, getting me there and not passing out in a snotty mess like last time (GAH!) and getting the results from them somehow lol. Yay - a challenge!

I'm going to give our GP clinic one last chance next week with my appointment, and then if they suck, I'll try and find the nearest good one.

Someone told me they might want to do a lumbar puncture 8O 8O 8O I can't imagine anything more scary. Oooh. I'm not the right person to need these tests.
midnight
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Fri Aug 10, 2012 3:16 pm

good news, the magnesium should help settle you down and possibly even mitigate the needle phobia. one thing i can tell you is that you can get used to it, i had to! when i was a kid i had to go for hypnosis over it, and then in the end the dentist just gassed me anyway hehe :)

as for the d3, you can get a high concentration liquid for that too.

good luck with the GP - see if you can get serum zinc and serum magnesium at a minimum, and if the doc seems receptive, get serum vitamin d3, and serum vit b12 too.

lumbar puncture sucked for me but others have no problem at all. if you end up with a test appointment, check back in for details so that you have the best possible experience. just takes a little reading!
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby jimmylegs » Fri Aug 10, 2012 3:31 pm

Determination of Zinc, Copper, Manganese, and Iron in Blood from Patients with Light-Sensitive Skin Diseases
http://www.ncbi.nlm.nih.gov/pubmed/6479415
Abstract:
It is known that some trace elements have an influence on the repair of UV light induced DNA damage. We have detected certain alterations in the excision repair of patients with photodermatoses. In these investigations of screening character the levels of zinc, copper, manganese, and iron were measured by means of atomic absorption spectrophotometry in the whole blood of 31 patients with polymorphic light eruption and 27 patients with cutaneous porphyrias. In active stage of polymorphic light eruption decreased zinc, copper, and iron concentrations and an increased manganese content were found. In remission only the zinc level was lower. In the active stage of cutaneous porphyrias a decreased zinc and iron content as well as an increased manganese level could be detected. A presumable connection between the findings and the rate of the excision repair is discussed.


based on this study. you may want to request serum copper and serum ferritin testing too, in addition to magnesium and zinc (and maybe d3 and b12 too).
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby lyndacarol » Fri Aug 10, 2012 4:02 pm

midnight wrote:I have Epsom salts! I'll try them, thanks! I'll try anything, it's horrible.

I'm allergic to the sun so I can't really get the vit D naturally...I have to wear factor 50-60 in the sun (which stops you absorbing vit D, right?), but tbh it barely ever shines here anyway lol... I'm looking at the health food store for supplements now..!

I'm extreeeeemely needle and vein phobic so this regular testing for levels thing (and getting the results!) is going to be an interesting battle on three fronts - getting the doc to want to do them, getting me there and not passing out in a snotty mess like last time (GAH!) and getting the results from them somehow lol. Yay - a challenge!

I'm going to give our GP clinic one last chance next week with my appointment, and then if they suck, I'll try and find the nearest good one.

Someone told me they might want to do a lumbar puncture 8O 8O 8O I can't imagine anything more scary. Oooh. I'm not the right person to need these tests.

I do not think that a lumbar puncture is always required for an MS diagnosis (I, for one, have never had a lumbar puncture; MRIs and symptoms were adequate for my diagnosis.)
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Re: Hi - Need reassurance? I've tried every other disease! :

Postby midnight » Sun Aug 12, 2012 5:33 am

Thanks for the reassurance guys!

Soaking in the Epsom bath worked quite well - now I just feel tight up that side rather than agonised. I've been munching my way through tonnes of healthy, healthy food while I wait for some supplements to arrive :)

Really interesting info about the sun allergy JL! I have a friend on a crafting forum who told me to get the D3 liquid drops too - she swears it mainly stops her relapses (she has relapsing remitting)..

I've written my huge list for the GP so I'll let you know how it goes. Husband has booked day off to come with me. (Needs his asthma sorting anyway!!)

Thanks again x
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