The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Neurological symptoms plus more

Discussion in 'Neurological/Neuro-sensory' started by SickFromAus, Mar 30, 2015.

  1. SickFromAus

    SickFromAus

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    Hi everyone, first time poster, male in my mid 50s.

    I'm having all sorts of issues right now and I don't even know if this is the right forum to post in.

    About 2 and a half years ago I was having leg cramps and burning feet, about 3 months later this turned into all over muscle twitching which is still going every day, all over including my face and tongue. I've had MRIs and been cleared of MS, and 4 EMGs over an 18 month period and been cleared of MND. Over the past couple of years, my stress levels have often been quite high due to the worry that I might have MND, and also work stress and poor sleep. Two sleep studies show very little stage 4 sleep and waking up often (I didn't need a sleep study to tell me that!!)

    My last EMG was a couple of weeks ago of 11 muscles including left & right side of tongue. Nerve conduction tests also ok. So enough EMGs, I'm turning into a pin cushion! The only "issue" noticed on my last EMG was fasiculations which the neurologist said are completely benign (benign in terms of MND). He was actually pleased to catch them on the EMG so he could tell if they were pathological or not.

    Reflexes are all in tact with no signs of upper motor neurone.

    Since about 6 months ago I am noticing atrophy of arms, hands, thighs, feet, neck, my GP and the Neuro agree it's atrophy but both suspect it's more fat atrophy rather than muscle, my muscle strength appears to be normal. I have gained considerable abdominal weight. My hands have become like road maps due to veins and what simply looks like a loss of bulk on the tops of both hands. I do know that I have lost muscle bulk in many places and was wondering if cortisol might have a role to play there. The skin in the inner side of my forearms arms and on the top of my feet has become very soft like a baby's skin.

    My feet are also losing bulk and have been getting quite sore including peeling skin along the small toe side and sores which will only clear up using cortisone cream which I don't want to use for too long. Feels like bone pain inside my feet along the top, and also pain in the arches and big toes. Shoes that are a little on the tight side make my feet burn and to stop this I have to take shoes and socks off. Skin along the sides of my feet gets very red.

    I have had a swallowing problem since Dec 2013 which has been checked by an ENT, and two EMGs which both included bulbar, nothing found (which of course is great news). I swallow fluids ok but find it hard to push down solids which are a little dry. Dry swallowing just feels dysfunctional. I thought I might have a TMJ problem as I do have bruxism and wear a night splint, but my dentist says no TMD so no idea why there's a swallowing problem.

    I'm noticing that I am becoming itchy but there's no rash or spots, just random itchiness including on my face. My mouth and throat are often quite dry, voice goes hoarse easily, eyes are dry, skin is dry, and tongue feels a bit like burning and some tongue pain deep at the back somewhere. Eyebrows have drooped and feel very puffy on my eyelids. Is there anything left to go wrong?!?!?! Of course there is, I seem to sweat more than usual. And there's a kind of numb sensation over my eyes and forehead and eyes feel like they're getting puffy and they sometimes sting, there's also sometimes a sensation over my forearms and top of hands like there's a stocking on them.

    I take daily vit C, magnesium powder with amino acids and calcium and some other vitamins (a Blackmores product), vit B complex, pro biotic tablet. Last blood test showed mildly elevated levels of CK, AST, ALT but a repeat test showed CK & AST had returned to within normal limits and ALT was on the way down too. Vit B12 and blood sugars are fine, TSH is fine. Blood pressure is fine but I do get heart PVCs which I'm told are also benign. A year ago my ferretin levels were too high but had returned to normal after 6 weeks, I think bad diet played a part there while I was on holiday. I'm also having a bath 2-3 times per week with those dead sea bath salts thinking it might be a magnesium issue.

    Medications include Avanza and Nexium.

    I'm thinking that my stress has triggered something but what? My Neuro has now said that I have BFS due to benign twitching being confirmed and the amount of time that has elapsed since the twitching started. I don't really think about MND now but do wonder if something else might be causing the twitching and all these other myriad of symptoms.

    I'm sorry for my long disjointed post, it's difficult to put this into some sort of order and not forget symptoms. If it would make things easier I could summarize symptoms if that would help?

    A rheumy said I've got symptoms of fibro but I don't really have the specific tender points, although I do sometimes get some muscle pain. I'd really appreciate any comments.

    Cheers!
     
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  2. soxfan

    soxfan Senior Member

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    Your first paragraph sounded exactly like me back in 2004. My first symptoms were leg cramps (severe)....then about 2 weeks later the twitching started only in my calves and feet and occasionally my right wrist.

    I also had an EMG done along with needles and the neurologist found nothing serious. That is the only EMG I ever had done and don't plan on another since I continue to this day to have the twitching 24/7. I also developed over the years nerve pain in my feet and calves which consists of burning...shooting...electrical current...vise like....stabbing.

    Since it has been going on for so long I don't worry about anything serious. Around the time this started the only abnormal thing they found was extremely high liver enzymes and a very low white count. They told me this was either from a viral or bacterial hit.

    I have been treated for Lyme in the past and became 95 percent well....the twitching completely stopped. But then within 8 months slipped back and since 2008 I have had the twitching constant.

    Have no idea what happened to me as I basically went to bed one night and felt fine and woke the next day to these symptoms...

    I have no tender points at all so Fibro has never been mentioned in my case.

    I am sorry I don't have more to tell you except the Lyme doctor told me the twitching is a misfiring from the brain so whatever attacked me hit me in the brain as still today I still have constant fatigue and weird feelings in my brain. I also get very mentally tired....can't handle much stimulation whether it be reading...watching tv...socializing etc....
     
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  3. Valentijn

    Valentijn WE ARE KINA

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    I'm not sure that I believe this. Magnesium largely resolves my twitching, and muscle use aggravates it. Hence it seems more peripheral than central. I've also got Lyme and Bartonella.
     
  4. soxfan

    soxfan Senior Member

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    I have tried Magnesium many times and it never did anything for the twitching at all....I have had this since 2004. Like I wrote in my post it basically happened very quickly and right after I had the funky blood test and flu symptoms. Before then I never had any muscle twitching and I was a runner before all this....I have nerve pain constant as well which is excruciating at times.
    Maybe for others magnesium helps but it never has helped me at all....
     
  5. Rand56

    Rand56 Senior Member

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    Maybe you get enough mag in your diet. I'm assuming that is the case with me. If I take extra mag, I feel worse.

    The only time I dealt with muscle twitching, was when I was doing higher dosages of thiamine. When I cut the dosage back, the muscle twitching went away.
     
  6. Sidereal

    Sidereal Senior Member

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    Potassium is the only thing that helps my muscle twitching.
     
  7. soxfan

    soxfan Senior Member

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    I never had muscle twitching before my flu symptoms and leg cramps. It all began then and then progressed to severe nerve pain as well....I don't believe mine has anything to do with being low in magnesium or potassium...I have asked my doctors several times and they have told me I could try supplements but didn't think they would help. I have tried and they do nothing....
     
    merylg likes this.
  8. Sea

    Sea Senior Member

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    Welcome to the forum @SickFromAus. I sympathise with your struggle to find answers. If you're looking for some direction to pursue with testing it would be useful to list what tests you've had and results so we can see what has already been ruled out.

    From your overall picture it would be interesting to pursue the B12 a bit more. Many of the symptoms you describe fit with a B12 deficiency and a simple B12 blood test does not rule it out. Firstly, the level Australia accepts as normal, Japan treats as a deficiency. Secondly, you can have an acceptable level of B12 in your system but for several possible reasons not be utilising it sufficiently. Thirdly, Nexium is a known contributer to making absorption less efficient. For some people a B12 replacement using the cheap readily available synthetic version (Cyanocobalamin) is not effective and they need to use Methylcobalamin or Hydroxycobalamin to make a difference.

    Also worthwhile pursuing if you haven't already is an autoimmune illness. There are several with swallowing difficulties, peripheral neuropathy and sweating dysregulation. Dryness in particular is most often associated with Sjogren's syndrome.

    All the best in your quest.
     
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  9. SickFromAus

    SickFromAus

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    Apologies for taking so long to post back here, and thanks for your replies. I finally found a doctor who was willing to spend some time with me and agree to a heap of blood tests which I had done mid July. These are the ones that came back abnormal or marginal.

    ALT 78 (Lab range 5-40) --- was 95 in early Jun 2015
    AST 42 (10-40) -- was 46 in early Jun 2015
    Serum Cortisol (blood taken @ 9:30 AM) 593 (170-550)
    Vit D 55 (50-250)
    Copper 18 (12-22) and Caeruloplas 0.24 (0.18-0.32) which calculates free copper to be 42.4% (GP wants it below 25)
    ESR in Sep 2014 was 7, and in Jan 2015 was 12 (2-14). ESR wasn't checked this time.
    MTHFR C677T Mutation Not Detected, but MTHFR A1298C Heterozygous Mutation Detected

    Other tests done which were normal were
    H.pylori IgG
    CBC normal except for 'low range' high cholesterol and triglycerides
    magnesium 0.98 mmol/L (0.7-1.05)
    B12 557 pmol/L (200-700)
    B-Histamine 0.6 umol/L (0.2-2.0)
    CRP 1 mg/L (<5)
    TSH 1.11 mU/L (0.5-5.5)
    AGA IgG & T-glutaminase both <1 (so not coeliac??)
    Homocysteine 7 umol/L (6-15)
    CK in March 2015 high normal
    Iron 15 (5-30)
    Ferritin 230 (30-500)
    Fasting Glucose 4.9 (3.6-6.0)
    Methylmalonate <0.10 (<0.40) (so unlikely B12 deficiency??)
    Zinc 13.9 (9.0-19.0)

    Currently taking CoQ10, K2, D3, Zinc, C, B Complex (GP also gave me two B12 shots but no effect), Digestive Enzymes, Magnesium Citrate, Probiotic, Slippery Elm Powder to sooth esophagus, Apple Cider Vinegar/Aloe Vera Juice/Manuka Honey mixture to help ease stomach acid burning, Melatonin to get me some sleep but still figuring out what dose I need. Have gone gluten and dairy free.

    I still have a lot of muscle twitching, some wasting on my hands fingers thighs feet neck face arms, 'fuzziness' sensation in my forehead, drooped eyebrows, horrible reflux, terrible sleep, difficult swallowing, increase in belly fat. I have thigh muscle fatigue and can't ride an exercise bike for more than 5 mins without sore burning fatigued thigh muscles.

    So it looks to me that the main issues seem to be high cortisol, high LDL - low HDL, high triglycerides, some adrenal fatigue perhaps??, stress and anxiety, high copper, possible inflammation (ESR could be high). The wasting and thigh muscle fatigue has me worried, as does the twitching.

    So this is where I'm at in my journey so far. Most of these issues except for the muscle fatigue have been going on now for about 2.5 years and now my body is feeling really worn out and fatigued. I don't have a diagnosis of CFS or adrenal fatigue, in fact I don't really have a diagnosis of anything but I feel like total crap, although the GP does suspect fatty liver. My energy and determination/drive are going downhill fast.

    Any thoughts or ideas most appreciated.
     
  10. laurieya

    laurieya

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    Sounds like mold poisoning. Have you been living or working in a place that had water leaks of all sorts, nothing too small to cause illness. So you need to think from big to small....roof, windows, door, plumbing, toliet, faucet, ice maker, how about your car, leave the windows down during a storm? How about your shower/tub many ways to get mold there. Have you checked under your sinks or behind your refrigerator lately? All your symptoms we have had due to mold. One you didn't mention is hair. Is yours falling out? Do you have regular headaches? Teeth pain? GI issues nausea, vomiting, bloating, burning, pain, constipation/diarrhea? You mentioned fuzziness, how about forgetfulness, hard time concentrating, hard to spell or do math, retrieving words, etc? One or more in these other categories would lead me more in the mold illness direction.
     
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  11. laurieya

    laurieya

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    Forgot to mention mold causes immune suppression too, so one will actually began having more bacterial and or viral problems. First few times they are easily dismissed as a cold or flu. Kids docs kept saying both were coming down with what looked like adenovirus & flus. But could never get a + test. One can miss early mild symptoms of nasal congestion, cough, runny nose and jump into more severe poisoning fast and linger there for a long time.

    I'm not really good with forums and may not find myself back. I bookmarked it in hopes that one day I will stumble upon it. I don't know how to set up a notification either. Been exposed too many times and the last one was too long.
     
    SickFromAus likes this.
  12. Tammy

    Tammy Senior Member

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    @SickFromAus......Did your GP have any ideas why your AST/ALT levels were elevated in June? Also were you ever tested for any viruses/pathogens?
     
    Last edited: Aug 5, 2015
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  13. laurieya

    laurieya

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    Tammy, I take it your question is for the previous post and not me. If I have misunderstood please let me know.
     
  14. AaroninOregon

    AaroninOregon noob

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    Looking at your symptoms and test tesults I see some similarities to mine, so I have one question...

    Have you ever taken fluoroquinolone antibiotics?
     
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  15. Tammy

    Tammy Senior Member

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    yes.... this is correct..........I will edit to add @
     
  16. caledonia

    caledonia

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    Your situation sounds complex, but the high cortisol can cause in increase in stomach acid causing acid reflux. It can also cause belly fat.

    Then you're taking Nexium. That depletes B12 and folate. That reduces methylation which reduces production of neurotransmitters (including serotonin and melatonin which are used for sleep). High cortisol can also disrupt sleep.

    B12 deficiency can cause neurological symptoms as well as many other symptoms. Symptoms of folate deficiency are extremely similar.

    Dry eyes and mouth can be caused by adrenal issues which affects essential fatty acids. Some Omega 3 EFA supplementation such as fish oil can help this. The fish oil should be pharmaceutical grade to avoid toxic impurities (due to pollution).

    Adrenal issues can also cause magnesium and potassium deficiencies as the aldosterone helps regulate their levels. Electrolyte deficiencies can cause muscle twitches and cramps as well as heart palps. Calcium helps magnesium absorb better.

    =-==-=-

    I think where I would start is with the adrenals. Get a 24 hour cortisol saliva test to see what your adrenals are doing over the course of the day (not just in the morning). If they're high, take supps such as Seriphos or Relora for 8 weeks or so to lower them back to normal. Then try getting off the Nexium.

    Try various stress reduction and relaxation techniques to assist, such as meditation, slow deep breaths, walks, etc.

    Calming supps such as magnesium, GABA or theanine, etc. can also be helpful.

    =-==-=-=

    A good naturopath or functional medicine doctor may be the right person to help you sort things out.

    I still feel like there might be something extra going on. Like the others are saying - Lyme, mold, mercury, something autoimmune, etc. but I'm not sure what.

    Have you noticed if you take a vacation to a different location if you get any improvement?

    Do you react to chemicals, scents, markers, paints, fumes?

    -=-=-=-=-=-

    (Avanza) Mirtazapine depletes:

    Vitamin B6, vitamin C, vitamin D, coenzyme Q10, and sodium.

    Niacin (Vitamin B3) Cracked/scaly skin, swollen/red tongue, fatigue, memory loss
    Magnesium Muscle weakness/spasm, heart arrhythmias, increased pain, constipation, mood changes, increased blood pressure, fatigue

    Nexium:
    Folic acid may be inhibited by taking this medication, causing a deficiency that could also create a deficiency of vitamin B12. Folic acid is required for the utilization of B12. The fall in vitamin B12 status may be the result of a decrease in stomach acid required for vitamin B12 absorption from food while taking this medication. Nutritional supplements containing these ingredients should be considered. Supplementation of 1,000 mcg of vitamin B12 per day is recommended to avoid depletion that can lead to anemia and high homocysteine blood levels.1

    • This medication may affect the proper absorption of beta-carotene and iron. Consult your pharmacist regarding supplementation. Antacids may reduce the absorption of iron. To restore iron levels, eat more foods containing iron, such as fish, meat, poultry, and oysters. Individuals taking antacids may benefit from iron supplementation, if blood tests indicate an iron deficiency3

    Calcium - Antacids can deplete calcium levels, because stomach acid is necessary for calcium absorption. Adding calcium-rich sources, such as dark green veggies, fruits, dairy, and calcium supplementation can be added to avoid depletion.5

    Nexium depletes B1, B12, Vit D, iron, Calcium and zinc. Nexium can can bacterial overgrowth of the small intestine and taking probiotics while on this medication is important. Take magnesium 1-2 hours away from this drug as it can block absorption.
     
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  17. taniaaust1

    taniaaust1

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    Hi, I just seen your post and noticed you also are in Australia, Im in Australia too.

    Your situation sounds complex and I think you will probably find out your issue is more then just one thing.

    With dry eyes, mouth and skin.. has Sjogren's syndrome been ruled out? I don't know much about that autoimmune disorder other then it's main symptoms are those but it also does have many other symptoms too. I'd firstly suggest to make sure your issue isn't this.

    As another said here in Australia the level what our doctors say is normal for B12 isn't what some other countries say, our normal is in some countries classified as deficiency. Many of your symptoms sound like a B deficiency. B deficiencies often aren't in isolation and usually if you do have one, often other B deficiencies can be present too .

    Main symptoms for some of the B deficiencies (excuse my poor spelling, this is from my nutrition notes from college)

    B1 (Thiamine) deficiency - wasting and weakness, abnormal heart rhythms (so possibly your PVCs), swollen legs/ankles, mental confusion, appetite loss, painful weak calf muscles.

    B6 (Pyridoxine) deficiency - tremors, convulsions, muscle twitching, numbness in hands/feet, depression, water retention, anaemia, kidney stones, abnormal brain waves, cracked corners of mouth and smooth tongue.

    B12 deficiency - anaemia, weakness, wasting, shortness of breath, poor coordination, impaired memory, progressive developing paranoia, mood swings, creeping paralisis of nerves and muscles (can start off as a glove sensation/ pins and needles sensations or numbness starting from finger/hands/ toes/feet and then going further arms/legs)

    This made me think of the B12 glove sensation
    The tongue can be affected in various ways in the different B deficiencies.. I cant remember which Bs but one can give a person a sore tongue, another one can give one a red and beefy tongue. B group deficiencies can cause tons of different symptoms.
    ...........

    I used to on nexium every day but are off it now as my GERD turned out to be being caused by hyperinsulinemia.
     
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  18. SickFromAus

    SickFromAus

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    Wow, so many responses, thank you so much!!! I hope my post below makes sense as I've snipped bits out of your replies to try to make my reply read ok (if that's even possible from me!).

    I love all your ideas, the way I'm feeling I'm open to any suggestions right now. The twitching has ramped up a few notches in the past few weeks and it's quite worrying, especially because of muscle loss as well as the swallowing problem. And now the thigh fatigue. I cling to my EMG results for hope, I pray it's not false hope.

    Someone here mentioned about taking the magnesium and probiotics apart. Made me think that I'll get a list of supplements and their quantities I'm taking and post that as soon as I can.


    @ laurieya No issues with mold as far as I know. No hair issues, some headaches but nothing really out out of the ordinary, no teeth pain,

    some nausea, recent vomiting but that was during a viral infection, no bloating, some burning in my feet, no constipation/diarrhea. The

    fuzziness is an actual sensation I can feel across my forehead. Concentrating isn't too good but my mind is all over these symptoms and how I feel so it's not surprising. So maybe this doesn't rule out mold it's just that I'm not aware of any exposure.

    @ Tammy Nope, no no ideas or suggestions which is why I recently changed doctors, long story there.

    @ AaroninOregon I have no idea, I did take antibiotics early last year when I had a really bad chest infection but that was more that a year after symptoms started, but I don't know if I took fluoroquinolone.

    @ caledonia Actually I've stopped the Nexium, about 5 weeks ago, and it's been tough. I've been needing to use some Gaviscon & TUMS when the acid burning gets too bad, but I've found that the apple cider vinegar/aloe vera juice/manuka honey helps to reduce the burning a lot, and the doctor told me to use slippery elm powder to try and coat the esophegous, hopefully I won't end up with ulcers, or worse.

    Yes Nexium can deplete B12 but my B12 test was 557 so I guess that's not too bad?? And my Magnesium is 0.98 (0.7 - 1.05) and potassium is 4.2 (3.5 - 5.5). So based on the blood levels I guess they're ok but am I looking at this the wrong way somehow?

    Next time I see the doctor I'll ask if he thinks a 24 hr saliva test for cortisol would be a good idea, I hope he'll agree to that. As for taking a vacation, made no difference at all, I went away for 6 weeks and the symptoms remained the same. I don't know if I react to chemicals etc, but we try not to use anything like that in the house, and I don't like fumes but they don't seem to cause reactions.


    @ taniaaust1 My B12 levels were apparently ok at 557 (200 - 700) but no other B's checked. Sorry I snipped your post but mine has become way too long, that's an interesting list of symptoms from the various B deficits. When I see my doctor I'll ask him about my B12 reading and other B's as well.

    I don't remember if I've been checked for Sjogren's syndrome, I'll go back over blood tests from last year and check. How hard was it for you to stop the Nexium, and what dose were you on? I've been using 20mg daily for about 15 years.


    Anyway tomorrow I'm starting my next round of tests with a carbohydrate breath test, I have to go for three of those over separate days, the doctor wants to see if he can figure out what's causing the reflux, he's checking for SIBO. I had an endoscopy in Jan 2015 and at that stage no hiatus hernia was evident although I was told years ago that I do have one. Anyway to be honest the reflux is the least of my worries, I'm pretty much freaking out about the twitching/muscle loss/swallowing problem issues. And you're all right, this seems to be a complex problem. I'm still wondering if I should be heading back to the neurologist again, the mnd fears are creeping back in, but the EMG was only 5 months ago.
     
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  19. caledonia

    caledonia

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    Great. It may take up to 52 days for the vitamin/mineral depletion to be totally fixed. The medicine permanently changes how the parietal cells in the stomach work and it takes 52 days to grow all new ones.

    The serum B12 test is unreliable. B12 can be ok in the blood, but not in the cells where it counts. So low is low, but normal can be low and high can also be low. Mine serum test reads normal about like yours, but on another test that shows levels in the cells my B12 was below detection limit (eek), and I have many symptoms of B12 deficiency.

    A regular doc won't know that test is, or won't believe in it or whatever. You need a naturopath or holistic doc. Or you can order one direct online from integrativepsychiatry.net or similar. They have a doc on staff that will sign the form for you. You can also consult with their nurse practitioner (Valerie Balandra) by phone for an interpretation of the test and ideas for treatment. She seems very knowledgeable and is nice to talk to.

    http://www.integrativepsychiatry.net/adrenal_stress_index.html
     
  20. SickFromAus

    SickFromAus

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    What's the test for checking cellular B12? I'd like to explore the B vitamins further with my doctor. You mentioned about seeing a naturopath or holistic doc. I'm now seeing a holistic doctor which is why I was able to get all the blood tests so far. Seeing a regular GP was a waste of time and money, the GP appointments were 10 minutes long and they don't really think outside the square in a short 10 minute appointment.

    I had my SIBO test today, it was negative so that's another issue to cross off the list.

    I won't see my holistic doctor until September so I've got some time up my sleeve to think about what to ask of him next. He mentioned a stool test to check for parasites so that'll be another test to do. All this is sending me broke! A few good things that I'm pleased about so far though, getting off the Nexium and Gluten and Dairy, it will be interesting to see if I slowly improve.

    Cheers !!
     
    Last edited: Aug 11, 2015

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