Hello and wanting feedback

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Hello and wanting feedback

Postby queengucci » Wed Jan 18, 2017 2:04 am

Hi Everyone

I am feeling over whelmed at the moment because I've been feeling terrible for 6 weeks. It is really wearing me down.

12 years ago I was in London and woke up one morning in massive amounts of widespread pain, boiling hot and stiff everywhere and throbbing through all of my muscles and joints. I can feel my entire body, every inch of it. I ended up going back home to Australia and was told I had rheumatoid arthritis (blood tests did not confirm this only symptoms). I was put on methetraxate (chemo drug) and took it for 4 years, it did nothing to reduce symptoms and made me feel more ill so I refused to take it. After 7 years I got myself stable and for the last 6 years other then feeling widespread constant soreness and being aware of every inch in my body, I've felt well.

On the 15 December I felt a weird feeling in my head and then pain travelled from my head down through my body, my muscles so so stiff ESP in the back and front of my neck, backs or arms and legs. Whilst this is happening I have severe brain fog and I am getting widespread tingling all over my body and terrible chest pain. I also feel like I cannot breath very well and someone has their hands around my throat. It really scares me and I often sit up in bed because I am scared to go to sleep. My heart is perfect.

I went to see my GP who did b12, calcium, full blood count etc tests. He cannot find anything including any sign of inflammation. He has told me he believes I need intensive stress therapy and he thinks I have fibromyalgia. He said because my symptoms are so wide spread it doesn't indicate any disease. I asked him about MS and he said no, didn't even want to entertain.

I have felt sick non stop with all of these symptoms for 6 weeks and the tingling is driving me insane so is being aware of every inch of my body.

I have perfect balance, have never felt numbness...slurred or minced my words.

Do any of you feel I should push for more testing for MS or do you have other ideas? The pain and not knowing is really starting to rattle me and I feel so worried.

Thank you
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Re: Hello and wanting feedback

Postby NHE » Wed Jan 18, 2017 4:33 am

Welcome to ThisIsMS,

queengucci wrote:I went to see my GP who did b12, calcium, full blood count etc tests. He cannot find anything including any sign of inflammation. He has told me he believes I need intensive stress therapy and he thinks I have fibromyalgia. He said because my symptoms are so wide spread it doesn't indicate any disease. I asked him about MS and he said no, didn't even want to entertain.


Do you happen to recall what your B12 results were? The standard laboratory range usually spans from about 225-800 pg/mL. However, the lower end of that range is much too low and includes many who are actually deficient in B12. For anyone experiencing neurological symptoms, vitamin B12 should be between 600-1000 pg/mL. You may wish to read the following topic for more information. natural-approach-f27/topic24857.html
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Re: Hello and wanting feedback

Postby queengucci » Wed Jan 18, 2017 5:15 am

Thank you I will find out.

I went vegan 14 months ago but I take a daily B12 supplement.

I am assuming from your response you don't think I have MS symptoms?

Thank you for taking the time.
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Re: Hello and wanting feedback

Postby Snoopy » Wed Jan 18, 2017 10:20 am

queengucci wrote:I went to see my GP who did b12, calcium, full blood count etc tests. He cannot find anything including any sign of inflammation. He has told me he believes I need intensive stress therapy and he thinks I have fibromyalgia. He said because my symptoms are so wide spread it doesn't indicate any disease. I asked him about MS and he said no, didn't even want to entertain.


Multiple Sclerosis does not cause wide spread symptoms such as you are having. Anxiety and stress can.
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Re: Hello and wanting feedback

Postby jimmylegs » Wed Jan 18, 2017 3:12 pm

hi qg and welcome :) i was vegan for ages before my dx and had ended up with a few macro and micro nutrient deficiencies also often seen in patients with ms, and which create similar symptoms.

at first my issues were reversible with b12. for a long time during and after my dx process, i hammered hard on the b12 gong, really wanting it to be THE answer. even though i had checked in with my doctor over the years, to make sure i was ok being vegan, i had never heard a peep about anything other than b12. that had to be it.

but it wasn't the only thing i needed to pay attention to. i just did not have a sense yet of how much more complex everything is. over time, after dx, i would end up slowly learning about the rest of the picture.

i'm personally bummed out that i did end up doing permanent damage to my spinal cord (and with a consistently low-normal b12 level on my medical records throughout, too). i think the good news for you is, 14 months *probably* isn't long enough to do irreversible damage. while the docs are doing their bit to rule things out, it's definitely worth looking into just exactly how your routine is meeting basic essential nutrient requirements! (and looking into it in way more detail than standard normal ranges, too)
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: Hello and wanting feedback

Postby queengucci » Wed Jan 18, 2017 5:54 pm

Hi Jimmylegs

Thanks for the reply. Sorry to hear about your spine problems but I believe the body can heal itself and miracles can happen.

Since I've been on this site I've read repeatedly vitamin issues and this may have caused the MS dx. I am wondering if MS is the cause of vitamins not absorbing not the other way around. I am a massive believer that the health of your stomach and colon determines disease.

I am thinking it is too coincidental that I've been vegan and experiencing these issues but I have always taken B12, magnesium, zinc, selenium, priobiotics. I also eat mainly while foods.

If I didn't not have widespread tingling MS would not have occurred to me. But my calcium and B12 have come back perfect. I am getting tingling in my face and gums which is the most concerning.

Is it common to have widespread tingling all over in MS without much of the other symptoms except pain?
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Re: Hello and wanting feedback

Postby jimmylegs » Wed Jan 18, 2017 7:10 pm

hey there, well it doesn't bother me to hear you say that but think it will sound kind of insulting to members who have lost mobility thanks to worse issues than mine. ppl are entitled to their opinions though. one of mine is that the body can heal itself to some extent given the right tools (can't regrow an amputated limb for example). and another is that miracles don't happen :)

it could be ms causing the nutrient problems. subacute combined degeneration of the spinal cord could cause b12 deficiency. scurvy could cause vit c deficiency and rickets could cause vit d deficiency as well. being facetious of course - i personally very much doubt it, having seen so much improvement from simply changing diet and increasing / re-organizing supplements.

there is a lot of emphasis here on making sure nutritional issues are ruled out. the docs don't need side effects from poor nutrient status messing with their dx process.

i will be interested to see if you can share serum levels of b12, magnesium and zinc. ferritin, copper and d3 would be good to check out as well. and serum uric acid. these are the ones that most commonly come up wrt ms. if you have all those serum levels in the optimal band within the broader normal range, you'll be the first i've encountered! clarification pls: while foods?

ms is a different animal for each patient; i haven't had to deal with much pain at all, personally. if the doc thinks it's fibro, you'll want to rule out magnesium and zinc issues for sure. serum levels should be high normal. i remember a pharmacist telling me i needed magnesium, and i said but i take it already, every day! well, i was doing it wrong because when i switched up my routine it was like magic, and i tested it over a week too, going back to my old routine, issues coming back, doing what he'd said, things clearing up. so be it.

potentially of interest:

A Quest for Better Understanding of Biochemical Changes in Fibromyalgia Syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3903931/
The defining symptoms of FMS are chronic widespread pain and fatigue. Other symptoms include tingling of the skin, prolonged muscle spasms, weakness in the limbs, nerve pain, muscle twitching and chronic sleep disturbances. Many patients of FMS also experience cognitive dysfunction. The initial FMS criteria included tenderness on pressure (tender points) in at least 11 of 18 defined anatomic sites with the presence of widespread pain.
The relationship between serum trace element levels and clinical parameters in patients with fibromyalgia.
https://www.ncbi.nlm.nih.gov/pubmed/18496697
Serum levels of zinc (P = 0.001) and magnesium (P = 0.002) were significantly decreased
Magnesium in Prevention and Therapy
http://www.mdpi.com/2072-6643/7/9/5388/htm
Dietary surveys of people in Europe and in the United States still reveal that intakes of magnesium are lower than the recommended amounts [20,21,22]. Epidemiological studies in Europe and North America have shown that people consuming Western-type diets are low in magnesium content, i.e. <30%–50% of the RDA for magnesium. It is suggested that the dietary intakes of magnesium in the United States have been declining over the last 100 years from about 500 mg/day to 175–225 mg/day. This is likely a result of the increasing use of fertilizers and processed foods [5,9,22,23,24].

In healthy individuals, magnesium serum concentration is closely maintained within the physiological range. The normal reference range for the magnesium in blood serum is 0.76–1.15 mmol/L [7,16,17,18,19].
According to many magnesium researchers, the appropriate lower reference limit of the serum magnesium concentration should be 0.85 mmol/L, especially for patients with diabetes [17,18,52,53]. For example, in the NHANES I study the reference interval for serum magnesium was determined in 15,820 individuals between the ages of 18 and 74 years. The results of this study identified the reference interval as 0.75 mmol/L to 0.955 mmol/L with a mean concentration of 0.85 mmol/L[54]. In a European study, magnesium deficiency was determined clinically and compared with the serum magnesium concentration. It was found that in individuals with serum magnesium level of 0.70 mmol/L, 90% of the individuals had clinical magnesium deficiency and at a cut off magnesium level of 0.75 mmol/L, 50% of individuals had clinical magnesium deficiency. At a cut off level of 0.80 mmol/L, 10% of individuals had clinical magnesium deficiency and at a cut off of 0.90 mmol/L, only 1% of the individuals had clinical magnesium deficiency [55].
i think that ^ may be one of the best chunks of text i have yet read about magnesium deficiency within the existing 'normal' range.
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: Hello and wanting feedback

Postby queengucci » Wed Jan 18, 2017 8:26 pm

Thank you for your time

Oh.. :( I wasn't meaning to sound offensive to anyone, I feel awful for anyone with health with issues. I've had terrible health for 12 years and couldn't walk for 9 months. I found listening to the Dr and taking what they gave me worsened my condition. I guess I meant, we can always do things to help ourselves and miracles happen when you can put things in remission.

Whole foods 80% of my diet is raw (I dehydrate), fruit, vegetables, nuts, seeds, beans on occasion.

I will pay extra attention to my vitamin levels and have just requested copies of my tests and will post them here. Thank you
Last edited by queengucci on Thu Jan 19, 2017 4:36 am, edited 1 time in total.
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Re: Hello and wanting feedback

Postby NHE » Thu Jan 19, 2017 12:09 am

queengucci wrote:Thank you I will find out.

I went vegan 14 months ago but I take a daily B12 supplement.

I am assuming from your response you don't think I have MS symptoms?

MS is a diagnosis of exclusion. All of the other many conditions that can produce MS-like symptoms need to be evaluated first prior to getting off the diagnostic bus ride at the MS stop. Furthermore, just because your doctor says that your B12 results, or any other test, are in the "normal" range doesn't actually mean that they are "normal." For example, one medical group in my area run by a large research university has a B12 range that starts at 180 pg/mL. That's not "normal." That's deficient. I feel sad for the patient with neurological symptoms and a B12 around 190-200 pg/mL being told that their B12 levels are OK being given an MS diagnosis and put on some drug like Tysabri and thereby risking PML. It's malpractice.
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Re: Hello and wanting feedback

Postby jimmylegs » Thu Jan 19, 2017 5:43 am

lol whole foods of course. long day yesterday. now you mention it, it was when i switched from vegan including processed foods (which involved some fortification), to whole food vegan that the situation really got bad for me, within a couple of years.

so, with magnesium and zinc looking like the big tickets for fibro per the above, let's dig in.

can you tally up a typical day's intake of magnesium for you, from this list?

http://www.whfoods.com/genpage.php?tnam ... #foodchart
no substitutions; yes the best listed here are leafy greens, but notice how far down the list kale is (and that's before we get into potential variation from differing ag practices). kale is awesome for other things, but not the best for magnesium.

then the same process for zinc http://www.whfoods.com/genpage.php?tnam ... #foodchart

and then add the mag and zinc forms and intakes from daily supplements, and we'll see how things stand.
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: Hello and wanting feedback

Postby queengucci » Thu Jan 19, 2017 10:26 pm

Hello I am getting the feeling you don't like the vegan diet :( I just can't eat animals...

I just can't see how I can be B12 deficient when I take a daily supplement :(

I have my B12 results and they are normal, I am in Australia:

My range 368
Units pmol/L
Reference (139-651)

I actually just went and had a B12 shot!!

They have detected Cytoplamic antibodies but my Dr is not concerned. By the looks of it there have to be other antibodies for it to be an issue.. I don't understand.

Thanks Fran
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Re: Hello and wanting feedback

Postby NHE » Thu Jan 19, 2017 10:58 pm

queengucci wrote:I just can't see how I can be B12 deficient when I take a daily supplement :(

I have my B12 results and they are normal, I am in Australia:

My range 368
Units pmol/L
Reference (139-651)

368 pmol/L converts to 498 pg/mL. That's a reasonable level that suggests that B12 may not be an issue for you. By the way, do you know if homocysteine, red blood cell folate and/or methylmalonic acid have been checked?

Just curious, what type of B12 and how much of it is in your supplement?
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Re: Hello and wanting feedback

Postby jimmylegs » Fri Jan 20, 2017 12:27 pm

hi again, if i were you just to be on the safe/preventative side, i would get a little further from that 370 pmol/L cutoff if you can :) i always try to stay above 500 pmol/L.

that said, b12 is just not top of the heap as far as research on fibro nutrition goes. also i was b12 deficient for a long time and pain was not a feature. something to consider however, your dose response to b12 may be limited by low zinc status. so let's see if we can get out of the b12 rut and back on track with the investigating magnesium and zinc for fibro.

there is no problem being vegan as long as you do the work to ensure essential nutrient requirements are met, from food or supplements, and do the best job you can given the info currently available.

bumping up the info question from below
can you tally up a typical day's intake of magnesium for you, from this list?

http://www.whfoods.com/genpage.php?tnam ... #foodchart
no substitutions; yes the best listed here are leafy greens, but notice how far down the list kale is (and that's before we get into potential variation from differing ag practices). kale is awesome for other things, but not the best for magnesium.

then the same process for zinc
http://www.whfoods.com/genpage.php?tnam ... #foodchart

and then add the mag and zinc forms and intakes from daily supplements, and we'll see how things stand.
note that you need about 30% more zinc intake from veg sources to compensate for low bioavailability. this is not challenging a choice it is pointing out a reality - you have to eat more mgs of veg zinc per day, or supplement to compensate. that's all.
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: Hello and wanting feedback

Postby queengucci » Fri Jan 20, 2017 10:35 pm

Hello

With the vegan diet, I do eat lots of beans, nuts, seeds, tempeh, I also drink a fresh, green juice every morning. I just cant think how I could be deficient in much.

I have had widespread throbbing pain, tingling, pins and needles since the middle of December (only 3 good days). I truly cannot express how much pain I am in, I cannot lay on my chest because my rib cage feels like it is being crushed, I cannot hold a pen and every step I take my feet feel like they are crushing, I feel like swarms of bees live in my ankles and elbows and my skin is going to split but when you look at me, you cannot see any swelling or red. This has gone on 12 years but it was the tingling that was a new and worrying symptom.

Funny, I had a methylcobalamin B12 injection yesterday and today, almost all of my symptoms are gone including my pain and tingling. I have also been having accupunture and seeing my chiro every few days. But the B12 seems to have made a BIG difference.

For B12 I alternative between two supplements on a daily basis:
1. Bioceauticals sulingual spay which has Cyanocbalamin 500mcs and
2. MTHFRSupport chewable tablets that has 2000mcg Methylcobalamin

Other blood tests that may be of interest although they are "normal":

Iron 9 umol/L Reference: (5-30)
Ferritin 26 ur/L Reference: (30-200)
Uric Acid 0.28 mmol/L Reference: (0.15-0.40)
Calcium 2.25 mmol/L
Albumin 42 g/L
Corr. Calcium 2.23 mmol/L
Magnesium 0.81 mmol/L Reference: (0.65-1.10)

I have just realised I have not been tested for Zinc and I have always been Zinc deficient.. so maybe, just maybe the vegan diet has depleted all Zinc in my body but do you think this could be the cause.

Thanks so much for helping and looking into these things, I really appreciate it
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Re: Hello and wanting feedback

Postby NHE » Sat Jan 21, 2017 4:35 am

queengucci wrote:Funny, I had a methylcobalamin B12 injection yesterday and today, almost all of my symptoms are gone including my pain and tingling. I have also been having accupunture and seeing my chiro every few days. But the B12 seems to have made a BIG difference.


B12 absorption is fairly complex. It's possible that you may have a problem absorbing B12 from the digestive tract.

Here's an overview of the process for B12.

https://www.youtube.com/watch?v=aww5NiahRb8
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