He says 100% I have pernicious anaemia and it’s quite bad. I have to inject ever other day for a year. Apparently my folate and ferritin is good. My vitamin D is also a tad low.
My bladder issue could be to do with the Anaemia. Likewise it could be reversing out. He seemed to think my being given antibiotics etc and searching for cancer is very unlikely to bear fruit.
Apparently my Humira may also be causing a lot of these issues. He advises to stay on it whilst I do the B12 because if it stops the frequent urination again I’d know the Humira isn’t causing it. However if I keep injecting b12 and quit Humira I won’t know what’s causing it.
I may try not to use the Humira because I’ve had enough of these issues anyway.
Just thought I’d share in case there’s anything that may help others. Open to anyone’s thoughts or comments. Or questions.
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Gobbozoid
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I am pleased to hear your visit was worthwhile and at last you have some answer's. It is so rewarding when you see a consultant who knows what they are talking about.
It is wonderful news that you met one of the main people. Plus, you got there and back safely. I hope you feel reassured by what he had to say.
He is very wise in his advice with regards to treating your PA and maintaining your Humira especially when trying to establish Cause and Effect.
Now that you have a Diagnosis of PA, you can start the process of accepting it. What is superbly important is the Prognosis of this disease. This means the how likely it is to develop or worsen. If you have not met him already then CliveAlive might make an appearance. If he is too busy then please know that many of us have been extremely poorly and then recover. Plus, I do not have an actual statistics for how many people who have injected Hydroxycobalamin Every Other Day for over a year, 2 years, 5 years, 20 years but we do. It is just a way of life for us.
Now, I am sure that in your line of work you use jargon. If you had read my profile then you would know that I am medically qualified. There are a few of us on here. I also have a home full of medical books. I have the disease myself and guess what ? When I can, I volunteer at the Pernicious Anaemia Society.
I explained the definition of prognosis.
In your 8th post, I had gone through all your posts, read what Medical History you had disclosed, put things in order, written an interim Plan of Care until you had further input from the Doctor. I have explained things in simple terms and tried to alleviate some of your anxieties.
Your mind has chosen to totally ignored ‘Then Recover’.
PA when treated and managed effectively has a very good prognosis. Some people who love sport and have the illness run marathons just for fun and for the charity. This helps raise awareness and money. Now, that is a pretty good recovery and an excellent prognosis.
Glad you saw Dr Klein. The condition itself won't worsen as you will be treating it at last, but some of us experience 'reversing out' when starting to inject B12. This means symptoms can fluctuate and won't necessarily improve in a steady upward curve, and odd new things may appear. It's because the nerves that have gradually been damaged by lack of B12 (usually without us noticing until things get REALLY bad!) start to repair and wake up. In my case I have had stabbing pains in the shins, as those nerves had obviously been badly affected without me realising. Of course it's not pleasant when it strikes, but it's actually been amazing to track the progress over 6 months - down the leg to the ankle and now to the foot. So you are starting on a new healing phase of your journey, and of course can find help and support with any blips here. Everyone's experience is different! Wishing you a good recovery.
I can empathise as I've had issues with that too, not sure whether it was B12. Really hope that begins to improve soon, it's so debilitating. I agree with others who say that it's worth staying on your Humira for just a bit longer, to evaluate the effeects of taking B12 while still on it.
Dr K diagnosed me with Pernicious Anaemia last December, my B12 blood levels were below the minimum. I have had what I would call irritability of the bladder on and off for a few years, especially when my back pain is bad - it feels as though I'm going to get an infection but doesn't develop into one. No blood in urine. I've come to suspect they are both nerve related, so B12 deficiency symptoms. Not on any other drugs except the usual iron/folic acid/VitD.
Thanks everyone’s advising me I need potassium and magnesium etc and that’s not what he said so it’s nice to know I am not alone. Are you getting better do you think?
"everyone’s advising me I need potassium and magnesium"
Who are? Random people on facebook? Can they answer if you ask why?
Yes, they are essential nutrients and you need adequate adequate amounts. Potassium supplementation has risks and it is rarely necessary.
Unless there is a kidney issue its healthy to keep a balanced high potassium diet (that doesnt mean downing gallons of coconut water and 20 bananas either).
My thoughts exactly. The moderators of groups claim they have experience but then that doesn’t mean qualifications. I know they are trying to help but it deflated me a bit.
Yes definitely, although it is an up and down process. But when I look back to last December I was SO fatigued I was pinned to the sofa for hours at a time, with terrible cramping and tingles. Also feeling I wouldn't be here in 5 years time...and although I wouldn't say I'm bouncing around now, I can do so much more. And my brain is clearer, more like myself again. Small individual steps, but a big overall difference in 6 months. And still more improvement to come, I'm sure. For both of us!
Yeah in all seriousness I wrote an online will a week ago and I am only 45. But I just feel like I am slowly dying which in effect I have been as if your b12 gets to low you usually have a heart attack I believe.
I felt very similar, and now realise that as if the physical symptoms aren't enough, B12 deficiency also causes negative thoughts, especially feeling as though you're going to die. Thankfully in my case that's pretty much disappeared. Just the occasional 3am dark moment, and I can reason with myself as I know what it is now.
Sorry the Clinical Picture includes the blood tests.
A Clinical Picture, is what people say their signs and symptoms are, history, tests, investigations, the way they move, their groans of pain and physical examination.
A scenario where a person has an extremely limited Clinical Picture can be someone keeling over in the street. To assess whether they have just fainted or had a heart attack what do you think someone would do ? There is no access to blood tests, results or investigations whilst people are out and about just going about their day.
i have bladder problems due to B12, they improved for a long time as I started injections but when a started weekly jabs instead of everyother day the issues returned. Now on daily jabs untill it hopefully gets better. Dr Klein is a good man.
I have started carrying spare clothes with me in case of accidents but mostly the problem is at night when I leave little puddles all the way to the loo. It is slowly improving with daily jabs.
sorry to hear that. It’s mortifying when it’s bladder or bowel issues. I pee so much at night I’ve had to take knock out drugs or I’d never sleep. I’ve not had an accident yet though and it’s been going on 4 years.
One person told me that once you have PA you are way more likely to get stomach cancer. I wonder if I should have screening and ongoing checks.
I think there is cancer assciated with B12 deficiency. Other will know more. I have come across people on here who have regualr endoscopys. I try to avoid medical procedues as much as possible.
Have you ever heard of diabetes insipidous? It makes you pee loads, nothing to do with sugar. Sometimes occurs after a stroke. You might want to ask your GP about it or have a google.
You could try sanitary pads. They would catch small dribbles and are fairly comfortable. I find the super thin ones dry my skin too much. I use the thicker overnight ones. My main use is biking: it provides padding without uncomfortable bike shorts, and they keep me from getting too sweaty. They should be able to capture small dribbles.
Sorry to hear your pernicious anemia is quite bad, thrilled that you saw someone who is taking your treatment very seriously and giving it adequate care!
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