Mama Sarah

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.

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.

I've gained 20kg to date (12 months), all from the waist down so I look really out of proportion. However, I need to add that I also became less active not long after starting taking it as I had surgery. So it's difficult to know how much of the gain is due to the Florinef and how much would have happened anyway because of the reduction in exercise. The fluid increase obviously increased my weight by about 1.5kg within a week. After that, I only started to notice after maybe a month or so. It's steadily gone on since then. I expressed my concern to my doctor who trialed me off the Florinef but I just couldn't stay upright so had to go back on it. I'm hoping for an opportunity to switch to midodrine and lose the Florinef soon. Coupled with some focused exercise, fingers crossed I'll see some weight loss. I know that, aside from the fluid gain, some people don't seem to gain anything whilst others are unlucky like me. It seems to be quite a varied experience.

I have an almost permanent dry mouth and feel the need to drink constantly. I can't decide if it's a side effect of hyoscine (it's listed on the patient information leaflet but the dry mouth started months after I started on the hyoscine) or whether it's a dysautonomia symptom. I know dry eyes are not uncommon (I can't wear contact lenses without lots of eyedrops) but not so much said about dry mouth. I find the medical stuff difficult to get my head around so I've no idea if saliva is controlled by the ANS or not. I would guess it is because a doctor told me that the ANS controls all the things you can't consciously control.

Thanks StayAtHomeMom. I'm actually in the UK and am eligible for Patient Transport to get to distant hospitals. I'm using them to see my urologist next week. I just got overwhelmed at the time they suggested it because I was already seeing specialists at 4 different hospitals and finding all the traveling really tough. It was probably a bit of a resistance to the necessity of it ("I don't want my life to be like this") I think I do need to request a referral now if a POTS specialist would be able to help. The only meds I take for this are the Florinef to raise my BP, Lyrica and morphine for pain, and Hyoscine for bladder spasms (I can't take the more effective anti-spasmodic meds because they send my HR soaring). Currently waiting on some CBD oil to see if I can use it to reduce my opiate use. I think I'm too often in 'tantrum' mode. When I know I should stand up, brush myself off and get back out there but actually want to sit on the floor and scream. I think I agree that getting answers to all this will help me find a way through. I do cope better if I understand what's going on. It's difficult when you feel like your body is not doing what you tell it to do, like it doesn't actually belong to me. My brain says we're climbing the mountain today and my body says it's staying in bed!

I'd be worried about tattooing something just because my doctors like to keep changing what they call all of this! If I knew they could settle on a name and stick with it then I'd be a lot more confident. But I've gone through several medical alert bracelets needing the engraving changed when they come up with different names/diagnoses for the same problem. With my medical alert bracelets, I did often find that people didn't know they were actually medical alert (maybe the symbol was too small) and those that did didn't realize that they needed to turn over the medallion to see the engraving on the back. So it wasn't as successful as I'd hoped except that they did sometimes tell the ambulance crew that I had a bracelet. Mine usually indicated that I had a card in my wallet with more info. I now have most of the info on the lock screen of my iPhone thanks to an excellent ICE app.

I'm new to the forum and stumbled across it when Googling for advice. I have: POTS, with tachycardia and low BP that can occur randomly, even when I'm lying down. Neurogenic bladder and currently have a supra-pubic catheter although I'm seeing a surgeon next week about potentially getting a Mitrofanoff Conduit. That incredible ability to faint even with normal blood pressure and this occurs most commonly after exertion. I live on the 3rd floor and frequently faint after climbing the stairs to get home. Chronic insomnia and am always so exhausted. Chronic pain. Delayed gastric emptying, which leads to big problems with constipation such that I'm on permanent laxatives. From reading posts here, it seems that all of this is part of dysautonomia. However, I've not got a specialist taking care of anything. I see a urologist for the bladder issues, a pain specialist, and my general doctor hands out the Florinef to keep my blood pressure up. I was supposed to see a POTS specialist but turned down the referral because I couldn't face traveling to the center, which is several hours' drive away. Thinking now that I made the wrong decision there. I'd just love to hear that I'm very definitely not alone. I have no family, live on my own, and am just feeling so lost with all of this. Been crying tonight because I don't know how to manage it all. I need to know that there is 'life' in amongst all of this and at the minute I just feel like I'm being betrayed by my own body. I used to climb mountains and now I have days when I can't even climb out of bed.