Quote:
Originally Posted by AnnieB3
Hi, KTF. Do you have an informal name you'd like to be called?
I have a few thoughts. First, you can always have more than one thing going on. Has anyone checked your Vitamin B12 level? Even at age 25, a deficiency can occur. Or pernicious anemia, which is an autoimmune disease where you can have parietal cell antibodies or instrinsic factor antibodies. With PA, you don't have a way to absorb the B12 and you're also lacking stomach acid.
Has anyone done any basic endocrine tests? There are conditions that might look like they have a neurological source but are something else. Just an example would be dehydration affecting the heart, causing bradycardia or tachycardia. The most obvious thing would be to see a cardiologist but it's usually an endocrinologist who evaluates chronic dehydration (other than from not drinking water!).
Sometimes it helps to have a really good internist who can put other ideas out there, in tandem with a neurologist or other specialists. Do you have one?
Tingles can also be related to the circulatory system. Have you had an EKG done, where 12 wires are hooked up to your chest, arms and legs to see how your heart is doing?
Have they ruled out Guillain-Barre?
And this might be farfetched but what about arsenic poisoning? Arsenic is becoming more common in foods and it can hurt the CNS, as can other heavy metals like mercury.
Everyone here is great at bouncing ideas off of but you really need one or two - or more - good docs to figure it all out. Being in limbo is not fun. I hope you do get it all figured out soon, so that you can have the appropriate treatment.
Annie
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By B12 is at 589 but I am anemic which I take care of through my diet. I do have issues with digestion which I suffer from GERD but don't take medication as that can negatively affect the nerves. I also have IBS since all this started. I too have tried to think outside the box because my symptoms just don't fit with anything in particular. I have only seen my GP and neurologist. They are not very forthcoming with referrals and ending up being diagnosed with anxiety disorder by my GP and she referred me to a psychologist. I was like yeah I'm anxious of course look at everything happening to me out of nowhere. My psych just talks to me about all my problems and lets me vent about the docs. More like a good friend. I had an EKG which was normal and I occasionally get swelling in my feet if I stand still too long. I thought circulatory as well but I guess nerve pain has nothing to do with that so I am told by the neurologist.
My GP first sent me to the neurologist and she mentioned Guillian Barre but that was the last I heard of it. Wouldn't that progress much faster than mine has? How can I be tested for that? What foods are known to have arsenic? Oh btw my name is Robin. Thanks for your insight I definitely think something is going on with my heart for sure whether related or not. It flutters and skips and has me out of breath from doing almost nothing at all. When I am at rest it is fine mostly.