Reversing out?

[Gobbozoid]

Am I reversing out? I’ve had between 3-4 weeks of every other day injections and actually feel worse than ever. I don’t even want to wake up if I am honest. My frequent urination and bladder pain is worse than ever so inflamed there’s trace blood in dipstick tests (they’ve ruled out all other possible causes). I just cried for about 30 minutes solid. I am so depressed and thinking bad thoughts, like I am a burden I’d rather not wake up. Proper depressing stuff.

is this reversing out all symptoms worsening? Previously when I’ve had b12 the loading doses on the NHS I just felt better after each jab so why after a months worth do I wish I was no longer here.

Last few gp appointments I’d asked for something to help keep me calm etc as felt my mental health was spiralling and got nothing.

I don’t know what to do, I just feel something is seriously wrong with me and no one knows what, or what to do. I can see my partner is worried too which makes me feel worse. I am 45 and I feel 85.

[Narwhal10]

Hi Gobbozoid,

Yes, this is can be a rather hideous time. You can feel like you are dying, your mood can hit rock bottom. Even just walking to the kettle can feel like you are wading into the sea against a really strong current. Flipping and utterly exhausting.

PA/B12D takes quite a bit of time to recover from. I generally say to the General Public that I have something similar to M.S. (Multiple Sclerosis). They understand that. Dr Joseph Chandy’s book Vitamin B12 in Clinical Practice discusses at length. Please show your partner the image.

Most of the regulars on here are aware of my personal circumstances of my biological father. He had both undiagnosed PA/B12D and Coeliac Disease. He was a young G.P. and did not even know what was wrong with him. He must have felt completely overwhelmed, in severe pain, depressed and exhausted. One day, he could not cope any more. So, took his own life.

Mate, cry, swear, feel flippin sorry for yourself. I ain’t gonna tell you you’re not a burden or are. I’m just gonna pick you up, chuck you over my shoulder and carry you the distance.

Some people on here have discussed CBD oil which is bought Over the Counter. Many people report that it relieves physical pain and helps with relaxation.

👍🏻

Comparing Vitamin B12 Deficiency to Multiple Sclerosis

[Gobbozoid in reply to Narwhal10]

Sorry for your loss. I’m just confused. My gp keeps suggesting my bladder issue is either cancer (which they have ruled out twice) or my Humira. I saw my rheumatologist regarding the Humira last week and he was adamant it’s not that, to the point he got a bit shirty with me and suggested I see another rheumatologist if I don’t trust them. I handed in my letter to him from a well known dr at Cambridge blood clinic about my PA diagnosis and he was like ‘who is this guy it says dr but there’s no letters after his name’. My gp when I gave them this letter said how has he diagnosed this in you?

My bladders been terrible for 4 years at least now. The only relief I got was when I first went on b12 I had 6 weeks of normality so I was sure that b12 was the answer but now I’ve injected a months worth so 3 times this initial amount and god I am worse than ever… what if I am wrong?

I need to be well there are people who need me.

I also wonder if this is Covid bladder. There’s one dr at st Mary’s who specialises in that his expensive to see. Thing is I think he specialises in woman so not sure he will even see me.

Feel very desperate.

[Chickens44 in reply to Gobbozoid]

I too have been EOD since I saw Dr Klein on 31st May. So five weeks on and I feel rubbish. I had overall nerve pain before as I was diagnosed with fibromyalgia 20 years ago. But the pain is worse and my fatigue is also a lot worse. I am getting low mood in the mornings again and also scared it is my anxiety returning. I keep telling myself ‘it’s going to be a bumpy ride’. As people say the body took a long time to get this way and it’s not going to heal overnight. So I am trusting the protocol. No one else has been able to tell me what any of my symptoms are caused by and how to resolve them. I also had a UTI a week or so after starting my injections, so had to have antibiotics for a few days and it cleared up, so the blood in your urine may just be that. I keep hoping one day I will wake and feel some improvement, but I have been advised to be patient. 🙁

[Gobbozoid in reply to Chickens44]

That’s the thing they can’t detect any infection. I’ve had a bad bladder for 4-5 years now since Covid. I always thought it was Covid bladder. But then when my gp gave me those first six b12 shots I thought wow I am normal again. I didn’t believe they would work.

I could put up with the blurred vision, the depression even, but the bladder is agony, even hurts to sit.

My partner who I love more than anything is due to go in for an operation August and I really need to be well. I’ve not left the house in days because of the frequent urge to pee. I am meant to keep our business going… we do dog training and walking. One of our clients dogs is very sick, his names Charlie his a choc lab. Cos she’s elderly she said she can’t help him and was going to have him put down, so his now with us, trying to do physio with him etc to give him a second chance, a chance to live. I’ve walked him every day for 8 years and his truly my best friend. I know his old at 13 but he needs to be given a chance to recover and live. It’s incredibly stressful helping an elderly big dog you love when you yourself feel like death. I just can’t live with this urination issue and although I know low b12 can cause it, I was left years with this issue, I hope it will clear up as it did in February. But what if it’s unrelated and I am left over another year waiting for it to get better?!

I just feel crap and don’t know what to do for the best.

[Narwhal10 in reply to Gobbozoid]

Gobz,

If you have had bladder problems for 4 years then this is going to be a long term solution. I do not have the answers. Our minds do go a bit awry. The clues are you had 6 weeks of normality when first injecting. What is my body telling me ?

Is the first pee in the morning the most painful ? What happens when I stop-start mid flow ? Pain ? Where do I feel it ? Lower abdomen ? What type of pain ? Burning ? Stabbing ? Throbbing ? Learn to examine yourself. Lying down, just look at your lower abdomen, then with the palm of your hand gently press around it starting from the right side of your body. Find any tenderness. Gently press the area again and hold for 4 seconds. Note if the pain gets better or worse when you remove your hand.

Unfortunately, you are male. Many girls and women are accustomed to monthly events. So, we use hot water bottles, heat pads, TENS machines but that is a cost. See how you fare using these. They may help, they may not. If you have access to a bath, see how you are in it. If you need to urinate whilst in it, then so be it. When you do, see if it is more comfortable or not.

This way, you are getting a lot of medical information.

With regards to your rheumatologist and not knowing who The Doctor is. Meh. If you asked either of them who the CCG’s Chief Executive was or Data Protection Officer was they would really struggle on those vital pieces of information too. Lots of egos in medicine.

Now, Charlie is far more in tune than you give them credit for. They know you are sick but is being obedient, loyal and faithful. You need a chance to recover and live. You need to be well and great bosses/leaders know exactly when to delegate responsibility. You, I need this by then, you do this, get on with it, do not bother me for 10 working days. I need more staff, 2 temps for 4 weeks. You, sort it out.

There’s also these :-

bbuk.org.uk/contact/

Back tomorrow 👍🏻

[Gobbozoid in reply to Narwhal10]

I understand if it’s the cause it will take time but don’t understand why last time it only took 6 and now it’s lots and nothing.

I don’t have pain when I pee just pain all the time. Sadly no bath. The Cambridge clinic said it would take 3 months to feel any better but again I worry this isn’t related… but then the injections worked before. So confused. I worry it’s Covid bladder but not sure why b12 would help.

Not sure if the sadness I feel is to do with my pain, or low b12, or just sad for Charlie or all 3..

[Nackapan in reply to Gobbozoid]

Probably all 3 .If b12 heloed before I wonder why if was stopped ?

This time it may just take longer.

Then keep going with it.

Try and find ways to lower your stress and anxiety.

I in the initial stages thought I eax dying.

Bedbound .

Unable to even have a radio on or audio book. .

Aromatherapy puffing out 24/7 .

Some on a hankie .

Breathing exercises helped.

For some reason lying down wax worse for great pain so was propped up. .

I did take alot of pain killers .

And tried s few drugs for migraines .

I did refuse antidepressants as knew I wasn't depressed .

Hooe your G.p will prescribe for you to get through this horrid time .

Your bladder problem is new.

Have every investigation you cxn get to rule things out .

Also address other deficiencies that your bloods show

? Vit D

? Ferritin

? Folate

Have a rethink about fluids you drink

Food you eat ect

We all 'clutch at straws ' at times waiting for s positive change .

Keep a log for small changes

Animals are perceptive.

One of my cats got very ill when I was.

Delegate

Another stayed with me .

Another stayed away

The latter can be common ....on to the well person or other animal for well being ....survival.

At one point it seemed like they had a rota