Mama Sarah Posted July 23, 2018 Report Share Posted July 23, 2018 It's been a fight. Today, I saw a general doctor who was LOVELY. She saw how unhappy and desperate I feel at the moment and has resolved to help. I'm no longer able to walk without a stick due to my appalling balance and I'm fainting and vomiting on a daily basis. Throw in the crippling fatigue and I'm struggling to leave the house. So, after so long fighting to see one specialist after another, I'm being tested to the limit to find out EXACTLY what is going on and what the underlying condition might be. I'm almost in tears tonight but, for once, it's not so sad. I'm just relieved that finally someone is looking at the bigger picture rather than all these specialists just focusing on their one part of my body that isn't working properly. Interestingly, the doctor thinks some of my current symptoms might actually be correctable problems like anemia, vitamin D deficiency, and electrolyte imbalances. It would be such a relief if some of my symptoms could be improved that easily. So I've a huge number of blood tests being run on Wednesday and I'm being tested for Sjogren's that day as well. It turns out that, sometimes, you just have to keep going from one doctor to the next to the next to the next until you find one who is interested enough to figure things out. I've got everything crossed for some answers...and some hope. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 23, 2018 Report Share Posted July 23, 2018 This is very good news! You are on track to healing. When the right doctor is in there you just know it. Deficiencies are easy to knock down, it's a simple but excellent beginning. Hooray for an excellent day for you! Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 23, 2018 Report Share Posted July 23, 2018 My lifeline is my PCP - just an "ordinary" doctor, just a "family doctor", just a wonderful human being who treats me and my symptoms because he knows they are real. He does not know what the mechanism of my illness is but he knows that my symptoms are real, he may not have all the answers but he is the answer to my most urgent needs: help me, protect me and guide me through this. He is the backbone of my journey to healing! We do not always find healing by means of a cure but by finding ways to go on living - and having a doctor who genuinely takes not only compassion but also action towards finding what is wrong is almost like a salve to the soul! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted July 24, 2018 Report Share Posted July 24, 2018 Congratulations!!! Very excited for you. I know from experience that finding that first doctor is amazing!! Good luck on your tests. I hope they find something that can be "fixed." Quote Link to comment Share on other sites More sharing options...
Mama Sarah Posted July 26, 2018 Author Report Share Posted July 26, 2018 First blood test result back showed non-existant B12 levels. Now waiting on results of tests for pernicious anemia, thought to be the most likely cause as it's another autoimmune disease. Means I can look forward to B12 injections every couple of months, but should at least make me feel a bit better. Never considered that the fatigue and the tachycardia and the balance problems were anything other than dysautonomia but they're all symptoms of B12 deficiency. At least if that can be corrected it will be possible to see where I am with the dysautonomia - might be a lot better off than I thought. Dozens more results still to come but at least this one should be fixable. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 26, 2018 Report Share Posted July 26, 2018 I am sorry to read you have a B12 deficiency but good news is that you now can start getting better, it's a manageable condition. You can eat your way to health too. There are a lot of B12 rich foods that make for a good meal. I was surprised to see clams at the top of the list. Yummy. https://ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional/ Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 26, 2018 Report Share Posted July 26, 2018 I also am B12 deficient and I take a shot every month. I never had a bad reaction to them and started feeling better right away. My husband also was diagnosed with low B12 and gets shots every month and his symptoms - mostly low energy and mood swings - improved rather rapidly after the first few shots. Wishing you best of luck 1 Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted July 26, 2018 Report Share Posted July 26, 2018 I am glad you found something fixable. I hope by getting your numbers up it will help your symptoms. My mom has the deficiency and she does the shots every once in a while but also does the drops under her tongue to help. The pills didn't work for her. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 26, 2018 Report Share Posted July 26, 2018 I was told by both physicians as well as nutritionists that many people with B12 deficiency are unable to absorb B12 from diet or oral supplements. In other words - diet may not be enough for you - you may need to take shots or sublingual form of B12 but your physician will direct you as to what is right for you. Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 26, 2018 Report Share Posted July 26, 2018 1 minute ago, Pistol said: I was told by both physicians as well as nutritionists that many people with B12 deficiency are unable to absorb B12 from diet or oral supplements. In other words - diet may not be enough for you - you may need to take shots or sublingual form of B12 but your physician will direct you as to what is right for you. How do you figure out if you cant absorb it? Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 26, 2018 Report Share Posted July 26, 2018 In my case it was simply that I already followed a normal diet but was severely deficient - and this was fixed by IM B12. Therefore it was clear that my body was unable to absorb this vitamin. Also - I have the same problem with iron and other minerals, have been deficient since childhood. Quote Link to comment Share on other sites More sharing options...
Echo Posted July 27, 2018 Report Share Posted July 27, 2018 Hi @Pistol so does that mean if the B12 test comes back normal then you don't have issues with absorption? I've had mine tested several times but it always comes back normal, right in the middle of normal range. Or can you have a normal blood test but still be deficient? Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 27, 2018 Report Share Posted July 27, 2018 2 hours ago, Echo said: Hi @Pistol so does that mean if the B12 test comes back normal then you don't have issues with absorption? I've had mine tested several times but it always comes back normal, right in the middle of normal range. Or can you have a normal blood test but still be deficient? @EchoYes---because my mother doesn't have PA but is deficient. Similarly, many with autoimmune are deficient. It's an easy fix but not so easy to catch. For example, I have HIGH b12 which could indicate my active b12 isn't being used whatsoever. But we'll see... Quote Link to comment Share on other sites More sharing options...
Echo Posted July 27, 2018 Report Share Posted July 27, 2018 Thanks @zerohours000 ...what is PA? 🤔 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 27, 2018 Report Share Posted July 27, 2018 Many of us lack intrinsic factor which is but needed by the stomach to process oral B12 or B12 in food. My great grandfather died of pernicious anemia but I don't have it per se. Other meds and supplements can also make it hard to absorb in the stomach. That's why sublingual is a much better bet. I'm told by several doctors it's as good as injectable, if you use it correctly. Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 27, 2018 Report Share Posted July 27, 2018 2 hours ago, Echo said: Thanks @zerohours000 ...what is PA? 🤔 @EchoPernicious Anemia Quote Link to comment Share on other sites More sharing options...
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