Update.More problems!

The comprehensive stool test I had done on the advice of my nutritionist has shown I have a very low SIgA marker. She believes this proves I had the leaky gut she suspected.

She explained that with a leaky gut, toxins,bacteria and food particles can leak into the blood stream and play havoc with the immune system. This can be hugely contributory to the development of the autoimmune diseases I have collected and often a reaction to gluten can play a part in this, so she recommended I go 100% gluten free.

She said it is vital she now helps me work on healing my gut, as ,left,it could end up with toxins etc crossing the blood/brain barrier.

I felt relieved to at least know why I have had so many different illnesses hit me, one after another but....

I decided to see the neurologist before we came away on holiday, as the burning/pins and needles in my legs and bad arm pain was causing me such grief and the osteopath seemed sure it as nerve related.

Was shocked by the news I got. Firstly, the neurologist seemed cross the hospital didn't inform him when I was admitted last year and had the glandular fever.

After testing all my reflexes and listening to me explaining at length all the various conditions I've been diagnosed with the past 18 months, he sat me down and said he thinks:-

1) I have mild neuropathy causing the pain in my limbs. This type of neuropathy is usually caused by Diabetes (tick) thyroid issues such as Hashimotos (tick)

or Sjogrens (currently awaiting test results as I'm told that is suspected I have now too)

So as the neurologist put it....for me.....a triple whammy.! It's not peripheral neuropathy but I can't remember the name of it.

He is hopeful with this neuropathy, he can reverse it with medication. So that is good news.He warns me I will lose A LOT of weight though and he is a tad concerned about that, as he says I'm already thin.

2) I have autonomic neuropathy. He wants me to have a tilt table test to see how far progressed it is. He also wants me on a specific beta blocker that won't affect my diabetic hypo awareness. I told him that since my diagnosis of suspected POTS, and my drastic change in diet plus supplements,I'd had huge improvement in my symptoms but he says I have to take the medication to protect my heart.

3) most worrying, he suspects I may have some inflammation at the back of my brain, so is lining up a brain scan for me. My mind seemed to switch off in his office after that point but as hubby drove me home I remembered the words of my nutritionist the previous day, saying about the blood/brain barrier being crossed and just pray that has not happened and caused some autoimmune reaction now in my brain too.

I didn't get why the neurologist was cross about not bing informed I had glandular fever last year but on researching, I found if you if have a compromised immune system, just sometimes, though rarely, it can affect the brain.

So, I'm finding it hard to switch off here on holiday in Cumbria.I feel so weak and worn out. I even had to get hubby to help me in the shower yesterday.

When I get back and have had the biopsy done on my thyroid nodules, the tilt table test, the brain scan and hopefully some sort of scan to check the bone loss is only in my jaw, just maybe I might start to take a few steps forward instead of more steps backward. I am desperate to stop this rapid decline.One can but hope!

Thanks for reading.


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7 Replies

  • Sorry to hear that and hope you get better soon xx


  • Wow you have so much going on. I'm sure you'll get through it. The diet will help so much. I follow the autoimmune protocol diet to heal the gut, I know a few others do as well. Hang in there, you'll sort it out. It's surprising how much can be healed with diet.

    Have you had you b12 tested at all? I had the nerve problems (for a few years) and loss of use of my right arm for a few weeks. I know don't get any pins and needles and numbness at all since supplementing my b12 to high levels with a good quality b complex in addition.

    Good luck

  • I've had B12 checked. It was within range, so I'm told it's not that but I'm noticing today that food and drinks are tasting different, unpleasant even.

    I've no idea what that's all about.

  • The NHS within range leaves a lot to be desired from what I've found. I had nerve problems with my arm and yet tested within range. If you look on the b12 deficiency website there is a protocol there you can check. You can have permanent neuro damage from your levels being below 500, which is still well within range for the NHS!

  • Spanglysplash, how do I argue this one with neurologist then? I don't want to have beta blockers or Topomax if all I really need is B12 supplementing.

    I'm running out of steam for keep fighting for propr diagnoses.

  • I know exactly how you feel. I've run out of steam myself. I'm just doing my own research now and trying to make head or tail of it. With the b12 deficiency website they have a protocol that is written by a doctor. I have bought needles from medisave and I've ordered methyl cobalamin by emailing the b12 site and then donating. You can also get methyl cobalamin sub linguals. Everybody is different, b12 may not be an issue for you. For me it's made a difference.

  • Chocoholic, I'm sorry you have so many health issues. Hopefully getting a diagnosis will help with treatment and you'll have some relief soon.

    B12 is optimal at 1,000. You could try 5,000mcg methylcobalamin sublingual lozenges, spray or patches. You can't overdose on B12 as excess is excreted in urine. You should also take a B complex vitamin to keep the other B vits balanced. This is the B12d symptom checker b12d.org/b12-signs-symptoms...

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