Went to specialist today..... what an embarrassment.... he asked my partner how he was .... fit as a fiddle. !!!
I thought what !! You can't walk without pain. Your bent over!
Next question he told the specialist he had had covid... WHEN!
At this I interrupted and said I think he's getting CONFUSED!
SHowed the specialist the pictures of new 4x4 what looks like birthmark that's suddenly showed up at the back of his head.
I asked the specialist about the report of the ambulance in December ... not on the records he got. Hardly anything on records for the last 8 months.
SPecialist asked what the NHS were investigating. Nothing
Just a dementia test which he passed.
I said to the specialist I have had TIA and I would like to rule this out, as he had had massive head ache, followed by dilirium. .... not on medical records yet I told the doctors as they tested his urine.
Anyway Brain Scan Next. (All this should of been done by the NHS!)
8 Months of this and I am at my wits end, constantly correcting him... I really don't know how much more I have left in the tank.
I'm glad that he's got a scan ordered but sorry that it's been such a struggle to get someone to listen to your concerns.
" not on medical records"
Have you put your concerns and his symptoms in a letter to GP and hospital (and maybe copied to practice manager/hospital manager if relevant)? This should hopefully ensure it's in his records.
If your partner still has capacity, has he considered making a Power of Attorney?
The specialist knew nothing what so ever about what he has been through. He only has medical records going back to 17 March 2022. That's two months, he knows nothing about him what so ever. I told him about the dilirium, calling for an ambulance etc etc... last year.
He asked about when diagnosed with B12 deficiency, I suggested to him that he should get medical records going back at least 10 months. LIke I said to you months ago I suspected he had a TIA .(as I had suffered the same)
I have lived with him near on 30 years, Doctors have spoken to him for 5 minutes (one such phone call he said to the dr I think I'm dying, I'm dying), none of them KNOW him. Not one follow up, yet we must have phoned them dozens of times .
I said to the specialist that the 1st B12 injection he was in no pain what so ever, and slept for nearly three days.
BUT then again what do I know.?
The specialist wanted to know what the surgery were investigating ....... nothing
I'm so sorry you're getting the run around and your partner isn't helping either. I don't have advice, just wanted to send a few virtual hugs your way xx.
I also slept for 3 days after my 2nd shot and only got up to eat and do a jab then back to sleep.
I have spoken to my partner, as I wasn't in with him for the first few minutes, as he had left the phone in the car, with the pictures I had taken of what I believe to a broken blood vessels on the back of the neck. Its sounds like my partner mis interpreted a lot of the questions. It's all confusing, they were talking about when it all started, after the covid and flu jab. It was then I went in when the specialist said have you had covid..... he said yes.... I said No.My partner thought he meant covid injection !
If only the specialist had had more than two months of medical records, perhaps he would of had a clearer picture.
My partner was exactly the same, waking up for a bit of food. By any chance even after sleeping for even a day did you feel as though you hadn't had any sleep at all !
I have edited this posting to explain my frustration.
In less than a year the following.
1. Getting my injection back....
Writing to gp, 5 day investigation... GP calls am I going to make a formal complaint.No ! Injections reinstated.
2. Partner..... Why are you taking b12 tablets.....
Dr ......... told me too five years ago.
3. Can my partner have a blood test...... no he had one in October ..... no he didnt it turned out too be two years previous.
4. Ear infection .... are you on medication ... no...
He looked at records ..... yes you are, your on diazepam.. no I'm not ...... if you look I had 8x 2mg tablets for a frozen shoulder.. that's was months ago.
WHY OH WHY don't they look at the records properly
Ugh i just wrote a long post and then the browser crashed. To answer your question quickly now - yes it was like i hadn't slep at all. I needed regular naps for months & i'm not a napper. The first month i was probably awake maybe 6 hours a day. I will write more tomorrow. I have some crazy records stories too.
So, my sleep story. After the 1st injection I was bouncing off the walls. The 2nd one was 2 days later, as I wanted to go EOD, hydroxy. After the 2nd shot, I fell into the 3 day coma. Not really a coma, but I would get up to eat and then fall back asleep again. Despite the serious brain fog, I managed to think rationally and decided to go for daily shots. By the afternoon of the day off, the neuropathy would come back raging, so I just said what the heck and jabbed every day.
After those 3 coma days, I would still need long naps. I'd get up around noon, take forever to eat breakfast and do my shot -- hands trembling and working up the courage to SI! Then I'd lie on the couch, watching netflix or browsing the forums, sometimes metally tallying all the ways the tingling and numbness were moving around or changing... and within an hour I'd fall back into a deep sleep. This wasn't just tiredness or fatigue - I literally couldn't keep my eyes open and I couldn't stay vertical. I'd wake up briefly when hubby got home, or earlier if the cats went for a walk on me and of course hit all the fibro pressure points. I'd continue lightly napping while he made dinner. Then I'd manage to drag myself the 5 steps from the couch to the dinner table - barely, and somehow managed not to drop my head into my plate. I'd eat with my head resting on one hand, kind of slumped over the table. After that, back to the couch to watch TV for a few hours. I remember we'd watch a 20 minute sitcom and I couldn't keep track of the plot nor remember what a character had said 3 minutes earlier. I was so out of it. Then, back to bed, and a deep sleep for another 10 to 14 hours. I was awake maybe 6 hours in the day. Remember, I hate naps! LOL!
After a few weeks of that, I could stay awake longer during the day, but inevitably sleep would call - heavy eyes, heavy limbs. Back to the couch. I don't remember feeling fatigued so much as gravity just pulling me down. I HAD to sleep, my body refused to do anything else.
I remember apologizing to hubby every day when he'd get back from work. I hadn't cleaned up the kitchen (that was normally my job), not gone shopping, not fed the cats, not done anything but sleep. Or browse the forums.
This continued for months and months. Over time I needed fewer nap hours, and eventually I could go a few days per week without a nap. Then I hit the 6 month mark, switched to a brand of b12 that didn't work for me, and after switching back to the good b12, I went through the whole sleep thing again. That was quite frustrating.
I've never in my life ever needed to sleep like that. It really was something else. I had read here that needing extra sleep was not uncommon, and it was an important and useful part of the healing process, so I just went with it. Luckily hubby was very understanding. I can't remember exactly but I think it took more than 1 year before I no longer needed regular naps to get through a day where I had done nothing else but sit on butt all day LOL.
Side note, I had neuro symptoms for years, starting with mood issues decades ago, the bugs crawling sensations about 10 years ago, and then interestingly severe neuropathy and cognitive issues hit literally overnight after I increased my thyroid meds. That was nearly 6 years ago. I remember reading here that other people have had severe b12d issues hit overnight as well, denise may well have been one of them but I can't remember now, denise please correct me if I am wrong.
Nowadays I am perfectly fine on 7 to 8 hours of sleep - my brain won't let me oversleep and I wake up without an alarm. No need to nap during the day - though I still have days where I have to rest on the couch. I still hate naps π
As for incorrect records. Mine say I had/have gestational diabetes and need insulin. I've never been pregnant! I don't have diabetes! Can you imagine if they'd read that and tried to give me insulin while I was laying unconscious in a hospital bed? (well you'd assume they'd test blood sugar first but i don't trust anyone as far as I can thrown them). Conversely, my FIL has some serious medical conditions on his records already for 11 years and he has NO treatment for it, they just totally ignore it! What good are records if they are not kept correctly and they are not used??!!! I just got access to them and have been reading all his records... well I was in quite a state last night after I discovered that. My rage was so bad that I myself probably caused my browser to crash π Sometimes I run out of words to describe the incompetence that goes on in the medical field. I suppose this is a family forum so I will keep my cursing to myself π I am very angry on your behalf as well! THEY are supposed to keep the records, THEY are supposed to read them and interpret them. It is their JOB. If they can'd do that, what they hell use are they??!! OK sorry I will stop now. Hubby says anger doesn't serve any purpose. Look forwards not back. Hard to do but ok.
Keep going with the B12, make sure folic acid is in the mix, let him sleep as much as he needs, and if you can keep a journal of symptoms it can be useful. Hopefully soon you will see some positive changes. The neuropathy, balance problems, and hole in my vision went away rather quicky (weeks to months). My cognitive issues, brain fog, energy levels, and residual tingling took the longest to reverse (months to years). I need 5mg folic acid every day, still now, despite good levels.
How many injections have you given him already? I think you wrote that somewhere but I can't find it back.
Hey what a read and rollercoaster you have been on. I would think your thyroid also plays a big part in your life... thank god neither of us suffer that.Wonderful that you have an amazing husband, my partner also amazing, but you know men it's only a vitamin and therefore somewhat more reluctant to accept. I can't remember exactly but he has had another this afternoon, did mine first then his, so hopefully will get a good night's sleep (makes such a difference). You would think a man would just go thanks, no he just god that's stinging .
π
I find it very difficult to judge what time of day to do the injection, always use to be mornings, but then suddenly I would fall asleep in the afternoon, so now around 1.00pm. Knowing my luck I will be bouncing around tonight and have got it wrong... but not to worry.
Most of my problems are crawling insects on my legs and reflexes especially right ankle. I avoid folic acid as once well over and made me very Ill for sometime until levels dropped. We're all different.
Anyway I will leave you with my pet hate ,the saying
Indeed, thyroid complicates things. Glad you're "just" dealing with B12.
I think many of us used to think vitamins were "just" vitamins. I guess we hear about vitamins and minerals so often, we forget that they are essential elements, and people used to die or have horrible complications from deficiencies. eg scurvy, beriberi. And about Men - NO COMMENT π€£π€£
Sorry to hear about the folic acid. Gotta find what works for you. π
Time of day ... that's a good question. I eventually went to 2x day so can't give much advice there... Trial and error as you well know
Iβm so sorry and sending a gentle hug. It is so frustrating for you, you know him best, he cannot advocate for himself or give a good history and what a surprise incomplete notes.
I hope you can catch an hour respite each day. And connect with others in your position.
On a practical note, you can flag these issues with your trustβs Information Governance team. The doctor did not have an accurate history from your partnerβs stored records so, this can leads to clinical errors including failing to order correct tests, referral to the appropriate specialist, misdiagnoses, medication errors and lack of follow up.
I cared for a lady a year ago who had obvious dementia following a what I believed to be a number of minor TIAs. She'd managed to pass 2 memory tests and even though she needed 20+ hour care and was pretty bonkers, she could be extremely plausible and I'd take her to the Dr saying how things were and she'd twist things around, say the complete counter to what I was saying and make it seem like I was making things up to make her seem daft! It was so frustrating because all I wanted was for her to get the help and care/treatment she needed. Her son, who lived with her and provided the other half of her care to me, was thankfully fully supportive but her daughter, who lived in Spain, also made out that her mother had full capacity and wanted her to live independently and so get rid of the son and me out of the equation.
The day after the last time I time I took her to the doctor and we went through the same charade, despite me saying that I thought she was having TIAs and had compromised capacity, she went on to have a PAC stroke and then ended up in a care home.
I also care for my Ex, who has a degree of dementia as a result of being a (hopefully recovering) alcoholic, and the authorities all tend to treat me like I'm making it up to avoid having to provide the care that they should be supplying.
I can't offer anything beyond seconding what Narwal10 says about getting the records sorted, other than sympathy in abundance. xx
Thanks, I dont believe he has dementia, the specialist is from overseas, and you know what it is when you talk to doctors etc about different complex issues they talk to you as if you know as much as they do, which obviously we dont.3.00am this morning while having a massive thunderstorm, we discussed the whole situation.
Why waste hundreds of pounds on a Brain scan to prove my suspicions, its like he said my 3 x TIAs hasn't harmed me in a detrimental way.
The reason we are not going ahead is that 15 Years ago I was in the same position, had to go private (M.P. involved then). We were given the scans, and details of the slipped disc..... I knew there was more to it, and after months took the Scan to the A &E and he revealed the numbness and the reasons Yes B12 deficiency diagnosed years earlier and not treated. Now the surgery, and specialist knew this but we didn't, unfortunately when I was at the surgery a few weeks later was asked to have a certain medical procedure and I refused. She asked why and of course replied honestly because of the numbness.
All hell broke out, out of hours doctor phoning me (it was horrendous) and all my medical records altered. So why should we pay for something that we are unlikely to get the true results, and now we have b12 injections at home.
Perhaps we are wrong in doing this, but we can honestly say that from past experience it is very hard to trust this profession.
It wasn't so much thinking he had dementia, just sympathetic towards you for having to cope with the confusion and the lack of records and hardly knowing whether you are coming or going! It's really hard. xx
It's just so frustrating thinking hes got medical records and mentioning what happened and him looking at us as though we were on a different planet ! That's when I suggested he gets at least 10 months of records. We will see.
Re opened to follow on from before.I can't reveal too much, but had another visit to specialist, he interrupted me when started conversation..... I said "sorry but I am paying for this consultation !"
To cut along story short when I referred him to 3 months before xmas, he said yes I know all about this..... So he obviously went back to surgery for further info.
Further conversation and he realised I knew far more about B12 deficiency than one should !
He is now writing to the surgery Re B12 .....
So they will now know I inject him......
(Will have to find a helmet next time I go down
π)
This morning had conversation with other half,
Please would you talk clearly ?
His reply ........... Aaaah the next thing you'll tell me is that I have had a stroke !
So the good news ..... his brain is starting to function.
Excellent news! I hope he's keeping up with the naps π
I can send you a few helmets i (mostly) no longer need π My collection of spears is much larger though, but you seem fine on that front! Good for you!
I could of made two complaints last year and sued them, they know it..... So I'd like to think they would rather work with me, than take the defensive attitude and the blame game.
Next step..... Solicitor (wait until I finish
π³ ..)... Power of attorney.... Haha You never ever know what's around the corner.
Denise I hope you Ex appreciates you, I also understand your statement about the authorities, I had the same when nursing my mother.... until they came to see her.... but that's another story.
Isn't it strange how we can imagine up so much yet be dismissed.
You are upon most things here, I am just going to write what happened last night and see what your opinion is.Yesterday gave other half B12 injection. Went to bed both slept for 4 to 5 hours, woke up suddenly so I came down for a drink, crept back up and he woke up and said I'm sweating like a pig,.. I just said don't worry that's the B12 fighting the inflammation. Put my head on the pillow and thought why did I say that without even thinking about it. I know this happened to me years ago, but is it possible ?
THis morning he is fine, There are so more weird things, but battery low so explain later.
It sounds like it might have been a bit hotter than usual while you were asleep (it was here!) because you were thirsty too - and, as we know, B12d doesn't cope well with temperatures even slightly above or below the ideal.
It could have been as a result of actually having the jab too, as you say.
I have been reading his diary, I told him to write down pain levels food B12 tablet.... or when I have given him B12 Injection etc.,When he has b12 tablet the nerve pain down that leg has been severe, so I stopped giving him it, Yet when I give him B12 Injection he has no shooting pain at all. He also takes very little pain relief.
The most weird.... he had slept on the sofa for 6 to 8 weeks. I put patio chair in shower room and he would have a shower. Then he said can I wash his hair, back of his head massive red (birthmark), I immediately said oh looks like you've got a broken blood vessel (all but disappeared now) two things he complained about was burning sensation and he couldn't turn his head to the right. It didnt itch or anything .
AT this I said show me your tongue (knowing B12 affects it) now this was really weird, the one side was normalish... the other side was double the size and just one swollen blue blood vein. I looked again this morning (normal) ..
Just a bit of detective work the NHS should have done.
Has your hubby ever been checked fo antiphospholipid syndrome ? The correct name for it is ( Hughes ) which is sticky blood. There is a site for it on here if you click on my hub.
It will be interesting to see if the brain scan shows anything. Your absolutely right all this should have been done on the NHS and what has happened to refering to past records now days ?
It must be a constant battle for you whe he is saying the opposite to you. π±
He has never ever been tested for anything, neither of us (other than B12) are on medication .... The paramedics that came out couldn't believe it .... nearly 76 years of age.So he has been very very lucky, other than tiredness (due to b12) he hasn't even been to the doctors other than a blood test two years ago, or flu jab etc. UNITIL october/november last year. Never ever complained about his back, gardening walking 30 miles a week, so to get imflammation of the spinal cord suddenly is beyond me!
You know well enough jillymo that to get anything in the NHS to day is like getting blood from a stone . Even a telephone call
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Please help! At a loss with my dad's symptoms and GP
An update on my progess, Parkinsons/b12
ο»Ώinflammation of the spinal cord
REST OF THE STORY
Help needed - doc says tests not available on NHS, stopping my B12 - no treatment plan offered - help!
