Intolerance test results

Ok so my test results are back. And I’m not surprised but still disappointed at how hard this will probably be.

So basically most of my diet is out. This is going to take a little research and planning before I start to follow it fully. I’m going to choose a start date and follow this for 2 weeks and see how much better I feel.

I think I’ll probably keep a blog/diary of how it goes as well to look back on.

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Vitamins and minerals to help with Multiple Sclerosis

I’m interested in the natural ways to help the body heal itself and if possible stop relapses. I though others may be interested in the information that I found. This blog is all about the vitamins that we can take to help manage our MS. I will include links to the sites that I found the information from so that you can look yourself. I am not saying this is our answer to MS or instead of medication, but I would like to try a more natural method and I’m  sure there are others that feel the same. It should be noted that I am not currently on any prescribed medication.

The National MS society provided a lot of information that I have not included, mainly because they were not recommended. And I apologise in advance for the length of this post.

Vitamin D


MS Society

There appears to be a link between Vitamin D levels and being diagnosed with MS. However there is still not enough evidence to tell us whether Vitamin D supplementation is an effective and also safe treatment for MS. The MS Society link several studies which say Vitamin D does not reduce the incidence of relapses.

However they discuss research which suggests Vitamin D may have a role to play in myelin repair… By adding Vitamin D to brain cells where the proteins were present, they found the production rate of oligodendrocytes (myelin making cells) increased by 80%. This work provides significant evidence that vitamin D could be involved in the regeneration of myelin once the disease has started.

But it needs to be considered that there are risks associated with having too much Vitamin D. One of the more serious side effects of taking too much vitamin D is hypercalcemia – the build-up of high levels of calcium in the blood. Complications associated with hypercalcemia include (but are not limited to): kidney and bile stones, bone pain, nausea, vomiting, psychological effects and abnormal heart rhythms.

The NHS recommends people taking vitamin D supplements not to exceed 1000IU (25 micrograms) per day. The European Food Safety Authority have published new guidance on the upper tolerable levels for vitamin D, which suggest that adults should not exceed 4000 IU (100 micrograms) per day as there no evidence for safety above this level.

 

Meanwhile the NHS website provides this information.

Previous research into vitamin D being used as a treatment for MS and to prevent relapse has been inconclusive because of small study sizes and poor methodology, so large randomised controlled trials are required. Nevertheless, this piece of research adds to the growing picture that low levels of vitamin D appear to play some part in the development of MS. The NHS have the same guidelines regarding the levels of vitamin D supplements.

 

The national MS society suggests this.

Studies in the laboratory and in people with MS indicate that vitamin D may also alter immune function in ways that have beneficial effects on the course of MS. Several studies have shown that low vitamin D levels are associated with an increased risk of having attacks (also called relapses or exacerbations) and developing new MRI lesions. Low levels have also been associated with increased levels of disability.

Importantly, these studies only demonstrate an association of low vitamin D with attacks, MRI lesions, and disability  — these studies do not definitively show that taking vitamin D supplements causes reduction in attack risk or disability  progression.

Vitamin D3 rather than D2 is generally considered the preferred form of vitamin D. Doses greater than 4,000 IU daily may cause toxic effects and should not be used unless prescribed by a physician.

 

Information from lifeextension.com

Two human clinical trials demonstrated that individuals with MS using vitamin D tended to have fewer relapses and less inflammation (Smolders 2008; Burton 2010; Wingerchuk 2005).  In a one year-long Vitamin D study, recurrence rate of MS “attacks” was 27% lower compared to baseline (Wingerchuk 2005). In another large dose Vitamin D trial, MS patients given 28,000- 280,000 IU weekly were found to have fewer active lesions during the 28 week long study (Kimball, 2007).  In light of the accumulating epidemiological and clinical evidence of the importance of vitamin D in this disease, supplementing the diet with vitamin D appears to be a low cost means to address this risk

Vitamin B12


Information from Verywell.com

Vitamin B12 plays an important role in the functioning of our nervous systems by helping to maintain the myelin sheath. In fact, a severe vitamin B12 deficiency can cause neurological symptoms that mimic MS symptoms, like weakness and numbness and tingling, walking and thinking problems. Even when people have slight B12 deficiency, they may exhibit symptoms like fatigue, depression, and memory loss. This is also supported via the lifeextension.com website.

Some studies have reported a higher rate of vitamin B12 deficiency in people with MS than in people without MS. Another study found low B12 levels in the cerebrospinal fluid of people with MS, although their blood levels were normal. That being said, other studies have found no association between vitamin B12 deficiency and MS – it’s still a controversial subject.

It’s important to note that there is no scientific evidence to support taking vitamin B12 if your levels are within the normal range – meaning taking vitamin B12 (when your levels are normal) will not help your neurological symptoms nor will they make your MS better, by preventing disease progression or relapses. This is also reiterated on the Everyday health.com website.

If a person is not found to be deficient, the recommended daily allowance is 2 to 3 mcg per day, or 2.4mcg to be precise. If a person is deficient, much higher daily doses are prescribed, followed by a maintenance daily dose with periodic vitamin B12 levels checked by your doctor.

 

Further information from lifeextension.com

Data suggests that patients given vitamin B12 supplements have experienced clinical improvements in their symptoms (Kidd 2001). For example, in the United Kingdom, researchers investigated the effects of 6 months of vitamin B12 (1 mg/week injection) on 138 patients with MS. The researchers concluded that the clinical course of patients with MS improved after beginning vitamin B12 treatment (Wade 2002).

 

MS-UK discuss B vitamins more generally as well as B12.

The B vitamins are needed for the normal functioning of the nerves and brain, and for the repair and maintenance of tissue. Vitamin B12 is needed for a healthy myelin sheath, nervous system and bone marrow. It is recommended that 100mg of vitamin B complex and 1mg of vitamin B12 is taken to ensure optimum levels of these important vitamins.

 

Antioxidants vitamins


 The national MS society suggests this.

The antioxidant vitamins include vitamin A (or its safer form, beta-carotene), vitamin C and vitamin E. As the name implies, antioxidants tend to  decrease the damage caused by oxidants or free radicals. Antioxidant vitamins are generally available in fruits and vegetables. Preliminary evidence suggests that the damage caused by free radicals may be involved in the disease process in MS. However, there are no well-documented published studies of people with MS that show a clinical benefit related to antioxidant supplements.

The safety of taking antioxidants in supplement form for people with MS has not been clearly established either. One small, five-week study indicates that antioxidants are safe for people with MS, but the study is too small and short to be conclusive. There is an important theoretical risk to consider. Antioxidant vitamins stimulate the immune system in laboratory experiments and in some groups of people. In MS, where an overactive immune system appears to be part of the disease process, stimulation may be dangerous.

In summary, there is limited evidence suggesting that antioxidants may be beneficial but there are theoretical risks involved, too. The most reasonable course may be for people to obtain antioxidants by eating 2–4 servings of fruits and 3–4 servings of vegetables every day. If antioxidant supplements are used, it may be best to use them in moderation. The link however seems to suggest several risks with taking these vitamins.

 

The MS Society appears to have similar views on these vitamins.

Oxidants, or free radicals, are chemicals that react easily with other substances in the body, changing or damaging their structure. For example, essential fatty acids are vulnerable to attack from oxidants. Certain vitamins – including vitamin A, C and E – can limit the damage oxidants cause and protect the essential fatty acids. These vitamins are known as antioxidants.

Some research has suggested that oxidant activity in the central nervous system may be linked to the damage that occurs in MS. However, there have been few studies into the use of antioxidants for people with MS and the significance is still unclear. Theoretically, antioxidant therapy could make the effects of MS worse, as some antioxidants have a stimulating effect on the immune system – although the levels found in a balanced diet would not cause a problem. More research is needed to determine the safety and potential benefits of antioxidant therapy for MS.

 

Ginkgo Biloba


Information from Everyday health.com

Ginkgo comes from one of the oldest tree species and has been used in China for medicinal purposes for thousands of years. Some, but not all, studies indicate that ginkgo may improve cognitive function in healthy people and also in those with dementia. However, ginkgo does not appear to improve cognitive function among people with MS. One small study in MS indicated that ginkgo may improve fatigue. Ginkgo has antioxidant effects. It also inhibits a substance known as platelet activating factor (PAF). By inhibiting PAF, ginkgo can cause a decrease in the activity of certain immune cells. These activities provide theoretical support for the use of ginkgo to treat MS.

Ginkgo has been studied in both the animal model of MS and in people with MS. In some animal model studies, ginkgo decreases disease activity. Two studies have been done in people. One suggested a benefit, but the larger of the two trials suggested no benefit. In that study, ginkgo was used to treat exacerbations, or attacks, of MS. The study did not consider whether ginkgo might have a role in preventing attacks or in improving MS-related cognitive dysfunction. Few serious side effects with ginkgo supplementation are known. Ginkgo may inhibit blood clotting and therefore should be avoided by people with bleeding disorders, those who take blood-thinning medications, and those undergoing surgery. Importantly, ginkgo may interact with many different prescription medications so its use should be discussed with healthcare providers.

 

lifeextension.com provided evidence from studies.

Gingko biloba extracts are primarily composed of flavonoids and terpenoids and have been reported to have properties that can influence neural activity and improve cognitive performance. While controlled trials of the effects of Gingko biloba on cognitive function have generated inconsistent findings, more recent studies found encouraging results for patients with MS (Birks 2007; Birks 2009; Lovera 2007).  In one study, patients received 120mg of Gingko biloba extract or placebo twice per day for 12 weeks. Those patients taking Gingko biloba exhibited improved measures of attention and reported fewer difficulties with memory.

More information about Gingko biloba is avaiable via webmd.

 

Probiotics


Recently there has been research conducted about leaky gut so the use of probiotics is more than likely going to be researched further. 

Everyday health.com provided this information.

They  are often referred to as “good” bacteria, probiotics are found in foods such as yogurt as well as in supplements. A study published in the Journal of Complementary and Integrative Medicine in August 2013 found that the evidence on probiotics for the prevention or treatment of autoimmune diseases such as MS is conflicting yet promising; “Human studies of gut bacteria and probiotics in MS are just starting,” Mowry says, “so we don’t know whether taking probiotics helps.”

However edu proided this information which should be considered. Probiotic supplement (containing Lactobacillus acidophilus): 5 to 10 billion CFUs (colony forming units) a day, for maintenance of gastrointestinal and immune health. Some probiotic supplements may need refrigeration. Check the label carefully. While probiotics may be helpful for people with MS, they may not be appropriate for individuals who are severely immunosuppressed or who are on immunosuppressive drugs.

There is more Probiotic information here on the NHS website and via emaxhealth.

Omega-3 Fatty Acids (FA)


Information from lifeextension.com

Omega-3 FAs are polyunsaturated FAs which cannot be synthesized in humans and therefore must be provided via dietary sources. Both plant and animal foods are potential sources of omega-3 FAs. For example, linolenic acid, found in flaxseed, flaxseed oil, and preferably, fish and fish oils have very high levels of EPA and DHA.

A small study looking at the effects of Omega-3 FAs on MS found that immune cells from treated patients and healthy controls produced significantly fewer pro-inflammatory cytokines after 3 months of treatment with 6 grams of fish oil per day (Gallai 1995).  One double blind placebo controlled study exists to date looking at the effect of Omega-3 FAs on MS disease progression.  In this study 312 patients were given either fish oil or olive oil placebo for 2 years.  The results of this trial exhibited a trend toward decreased disease severity in the omega-3 FA group when compared with control (Bates 1989). More recent studies have shown that MS patients given 10g of fish oil per day for 3 months exhibited significantly reduced levels of matrix metalloproteinase-9 (MMP-9), a factor correlated with disease progression, and also had greater concentrations of omega-3 FAs in their red blood cell membranes (Shinto 2009).  Other work has shown that MS patients, while on a low fat diet with omega-3 FA supplementation, experienced significantly reduced fatigue and lower relapse rates (Weinstock-Guttman 2005).  Based upon clinical data and patient accounts, omega-3 FAs appear to be well tolerated and safe with no reports of adverse events.

 

MS-UK Discusses Omega 3 along with Omega 6.

Omega 3 and Omega 6 are essential fatty acids. Omega 3 is needed for the normal function of the nervous system and the production of myelin. Omega 6 helps to regulate the immune system and has anti-viral properties. These essential fatty acids can be found in the following supplements:

  • Fish oil supplements (e.g. cod liver oil) – high in Omega 3
  • Evening primrose oil or starflower oil – both are high in Omega 6
  • Flaxseed oil or hemp seed oil – both contain a good balance of both Omega 3 and Omega 6.

 

The MS Society also suggest benefits of Omega oils

Some studies have suggested that omega 6 EFAs may benefit people with MS. As a result, linoleic acid (a form of omega 6 EFA) is included in the 2003 NICE guideline for MS, which sets out how MS should be treated on the NHS in England and Wales. It says that 17-23 g of linoleic acid a day may slow the progression of disability.

But a more recent review of all the evidence relating to EFA supplements (both omega 3 and omega 6) found that they did not appear to have a major effect on disease progression. The review did, however, say there was not enough evidence to reach firm conclusions.

 

Green Tea


lifeextension.com

Epigallocatechin-3-gallate (EGCG) is one of many active ingredients of green tea that have been reported to have beneficial effects on the nervous and immune systems. In an animal study of MS, ECGC was found to prevent severity of clinical signs by decreasing inflammation and protecting nerve cells (Aktas 2004). According to animal research, green tea has the ability to significantly increase regulatory T cells which are critical to providing balance to the immune system and suppressing autoimmunity (Wong, 2011).

There is lots of information about Green Tea on the NHS website.

 

 

I think every site I looked at said more research is needed. There was loads of information on the healthline site but very little to back it up. I didn’t read this website fully and a few of the sections seemed to contradict what I read elsewhere. I summed up that I didn’t trust this site fully.

 

 

What I  will start as a daily routine.


Vitamin D – 3000IU (this level was recommended in a local vitamin supplement shop)

B12

B Complex

Ginkgo Biolba

Probiotics (pro 5)

Omega 3

Green tea

 

 

 

 

 

MRI contrast scan

For some reason lying in a MRI machine makes me reassess my future life decisions. Thankfully I don’t think too much about the past since its out of my control anyway.

After my first appointment with the MS specialist I was given a follow up scan with a contrast dye. The theory is that if the lesions are active I start medication. The scan was this morning and started with me being told they didn’t know I was to get a dye and I would have to wait for someone to be present to administer it. So we had a 45min wait for my new appointment time. It wasn’t worth going home so we waited about the hospital. There is something about hospitals that make me feel too well to be there (I suppose that’s a good thing).

The nurse got the cannula put in easily and I was ready to go for my scan. As soon as you head is held in place you feel like you have to move! 2 scans were done before the dye was administered and another 2 scans were carried out. The results should be back in less than 2 weeks. (We’ll see as it took weeks the last time)

But describing the scan wasn’t my reason for this post. Lying still with no distractions and only my thoughts I got time to really think.

What if my MS gets worse, will I regret things that I didn’t do sooner? Now I know some things are out of my control, like winning millions (even though I try really hard). Most importantly I want to do what is best for the kids and they hold me back making some of my bigger decisions. For example I’ve been with my partner for over a year now and we want to live together. But then there are so many what if questions. I’ve been in this house for 8 years and it’s been a stabilising factor for the boys since they were born. But I really feel ready to move house. It seems like a waste of finances and added stress to move house and then a short while later move in with my partner.

Maybe for now although the MRI has made me assess my future I need to live in the present and let the future take care of itself.

Intolerance test for MS symptoms

I posted before about my theory regarding diet and how it might help MS. previous post here.

So I ordered the York intolerance test at home kit. info here My thoughts are that this should be easier than taking everything out of my diet and then introducing it again slowly to see what I react to.

I received the test kit within a few days and decided to give it a go the day after it arrived. I opened the pack and read all the instructions and I was ready to start.

So it sounded easy enough. Now I should say I don’t give blood easily. Nurses would panic as they described me as going very white when they took blood. The blood bank described me as translucent and kindly said they would recommend that I didn’t give blood again. (I was scaring the nurses and putting other people off). I thought I had got over this though when I fell pregnant with my eldest and the amount of routine blood tests that we go through.

There were two one use lancets (pins to draw blood) in the test kit. My first thought was why would I need 2, I’m not doing this more than once! So I pricked my finger and massaged it like directed to get a large drop of blood (I started to feel a bit sick) I soaked up the blood with the testing wand that was provided and massaged again to get more blood. Then it was disaster my blood stopped, now what I was going to do? I felt sick and I was beginning to get light headed (must have been the pints of blood I had lost). I sat down for a minute and ate a sweet/candy (clearly it was my blood sugars too). Then I knew I was going to have to do it a second time!

The second finger was worse, it bled even less than the first! But I think I got enough blood on the testing wand and posted the testing kit back to the company.

So my results should be back in 10 days. The countdown is on, it’s like getting ready to start a diet. I’m eating all the things I know are going to come back as a problem while I still can.

Accepting a multiple sclerosis diagnosis

So it’s been a few months since I was diagnosed, I’ve started the process of returning to work and I’m trying to get on with my life in general.

I just need one thing solved for me. I need the stressful things in my life to just go away. So I know that isn’t possible with some things, but as far as I’m concerned some things are being prolonged by people which adds to the amount of stress I feel.

Today is a bad day and I’ve been feeling it get worse over the past few days. I’ve had stress building up to today. Today it was meant to be over, or at least start the process of moving on. But it’s not happened. It’s out of my control and because I can’t control it I’m getting stressed. And the stress is causing pain in my eye as well as my vision to get worse in the same eye.

But on a more positive note. I’ve started to look at my options again with a clearer head about managing my MS. This is a more natural approach since medication doesn’t seem to be appropriate right now.

There are several diets that claim to help MS or cure MS. There are also sites and blogs from people who have mixed the diets together to find what works best for them. The advice can be and is overwhelming.

But each of them seem to have something in common if you want to help your MS through diet then you have to find out what food you react to and eliminate it from your diet. There are also certain foods which appear to help inflammation which I need to look into further.

I couldn’t decide what approach as they all require you to be really strict. And then I remembered about an intolerance test that I read about. My thoughts were that if I could find out which foods I was intolerant to, then I could find out which foods I should be avoiding. An easier way than following a strict diet and introducing foods slowly to see what I react to. (Ok I saw this as a cheats way to find out what I shouldn’t be eating)

In the end I’ve decided to take the York intolerance test. It needs a home blood test to be sent away and the results should be back in 2 weeks. I’ve been given a discount as they have a link with a MS charity and I’ve ordered the test kit. So I should start getting some answers in the next few weeks.

Multiple sclerosis 2 months on.

So many things have been going on in my life right now and some of them I’m not ready to share just yet. I posted about being diagnosed with MS and I want to thank everyone for their kind words.

MS is another new journey in my life and when I look back only 2-3 years I can not believe the changes both in my life and in me. Most of them are positive although brought about my something negative.

I went to my first MS specialist appointment where my diagnosis was confirmed and various questions were answered. I think the hardest thing is the unknown. I don’t know if I’ll have another relapse, and I don’t know how bad it will be. Or if it will leave any lasting damage. I’ve to get some more tests to see if anything has progressed.

During my appointment I was advised that my visual problems can be helped with tinted glasses. The only specialist who can assess my needs is based in my local town. Finally I’m starting to get some good news.

I went to my appointment and got assessed for a fetching pair of green specs, but if they work then I don’t think I care. The appointment was fascinating with different colors having different reactions to my sight along with my physical abilities and senses. I left feeling ready to fight this again.

I have been off my work for several weeks as the diagnosis floored me. But I now felt with my glasses to assist I was ready to return. I met with my manager who recommended I start slow and build up at a pace I can manage. Therefore I am returning to work 2 days a week to begin with. I’m hoping this is the start of things improving again.