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Numbess after Carbs/Sugar
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<blockquote data-quote="DionneT" data-source="post: 1695221" data-attributes="member: 468501"><p>Hi [USER=468700]@ChetRoi[/USER],</p><p></p><p>Thankyou so much for your reply.</p><p>I strongly suspect that my issues are autoimmune in nature- I have many of the features of Sjogrens syndrome (as yet undiagnosed), as do several family members on my father's side, although I am the only one with neuropathy and carb metabolism problems so far. I also have a history of epilepsy which may be relevant, although have been seizure-free for ~6 years. I was hospitalised last winter during a particularly bad flare up of neuropathy/extreme fatigue (this happened after a run of viral infections)-multiple sclerosis was ruled out, Guillain-Barre was suspected but also ruled out, things then settled down and I have had a year or so of seeing GPs who find me interesting but don't really know what to do with me! So it has been up to me to get this far.</p><p></p><p>I finally have a rheumatology appointment in a couple of weeks to investigate my suspicions of Sjogrens, and plan to pursue an endocrinology referral too, I will most certainly keep you updated with any progress. I will also look into ALA for burning mouth, thankyou for the recommendation!</p><p></p><p>I have tried a variety of supplements; methylcobalamin, ubiquinol, acetyl-L-carnitine, Niacinamide and magnesium and only noticed a very small improvement, whilst the ketogenic diet changed my health dramatically in around 3 days. I am fit and active again, and the brain fog lifted quickly. However I still have bad days despite the diet. I am in my early 30's, and worry about the likelihood of this being progressive.</p><p></p><p>Like yourself I am a scientist, although I specialise in the plant immune system not the human one unfortunately! Medical research papers have been a great comfort this past year, it has been a fascinating learning curve.</p><p></p><p>May I ask if your exome sequencing revealed anything? And if any diagnostic tests you have had up to this point have been particularly helpful?</p><p></p><p>I would also be very interested to know about the onset of your symptoms- were you in full health until 6 years ago? Or were there clues beforehand that something was wrong?</p><p></p><p>Thankyou again for your post, I wish you all the best and look forward to hearing more.</p><p></p><p>Dionne</p></blockquote><p></p>
[QUOTE="DionneT, post: 1695221, member: 468501"] Hi [USER=468700]@ChetRoi[/USER], Thankyou so much for your reply. I strongly suspect that my issues are autoimmune in nature- I have many of the features of Sjogrens syndrome (as yet undiagnosed), as do several family members on my father's side, although I am the only one with neuropathy and carb metabolism problems so far. I also have a history of epilepsy which may be relevant, although have been seizure-free for ~6 years. I was hospitalised last winter during a particularly bad flare up of neuropathy/extreme fatigue (this happened after a run of viral infections)-multiple sclerosis was ruled out, Guillain-Barre was suspected but also ruled out, things then settled down and I have had a year or so of seeing GPs who find me interesting but don't really know what to do with me! So it has been up to me to get this far. I finally have a rheumatology appointment in a couple of weeks to investigate my suspicions of Sjogrens, and plan to pursue an endocrinology referral too, I will most certainly keep you updated with any progress. I will also look into ALA for burning mouth, thankyou for the recommendation! I have tried a variety of supplements; methylcobalamin, ubiquinol, acetyl-L-carnitine, Niacinamide and magnesium and only noticed a very small improvement, whilst the ketogenic diet changed my health dramatically in around 3 days. I am fit and active again, and the brain fog lifted quickly. However I still have bad days despite the diet. I am in my early 30's, and worry about the likelihood of this being progressive. Like yourself I am a scientist, although I specialise in the plant immune system not the human one unfortunately! Medical research papers have been a great comfort this past year, it has been a fascinating learning curve. May I ask if your exome sequencing revealed anything? And if any diagnostic tests you have had up to this point have been particularly helpful? I would also be very interested to know about the onset of your symptoms- were you in full health until 6 years ago? Or were there clues beforehand that something was wrong? Thankyou again for your post, I wish you all the best and look forward to hearing more. Dionne [/QUOTE]
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