Update on my Daughter: Hi everyone, I... - Pernicious Anaemi...

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Update on my Daughter

karenhath009
karenhath009

Hi everyone, I wanted to update you on my daughter. Her neurological symptoms are so severe now, she can't clench her fists and involuntarily drops things, her left leg goes numb and she has blurred vision causing vertigo. She also feels sick with a bad headache in the morning. Her Doctor is sticking with the ME diagnosis even though the only tests they've done are blood tests. I've begged my daughter to try self injecting B12 to see if it helps but she won't. She paid for a private Bupa call with another Doctor yesterday who said the neurological symptoms are real red flags and she needs to see a neurologist within the next two weeks. I think nausea and headache in the morning can be a sign of something more sinister?

The private doctor wrote a letter to her GP yesterday so she will be the one to refer her to the neurologist. If she refuses, I guess we'll have to try to find a way to pay privately.

I didn't realise things had got so bad not living close by. Feeling very worried 😞

60 Replies
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Do not let the doctor refuse!

Your daughter obviously needs to see a neurologist ASAP. If the doctor refuses tell her that you want to speak with the practice manager NOW! Threaten letters to your MP, press and radio. Tell them you know a famous footballer (that seems to be the way to get things done nowadays). Do anything, but get that appointment with a neurologist.

karenhath009
karenhath009 in reply to fbirder

Thanks, we will. I'm very disconcerted that the person who diagnosed her with ME was a psychologist. I was expecting medical tests to be done. It all feels very wrong to me. Daughter had telephone appointment with her practice Doctor on Monday who basically said it's all in her head. It seems very callous behaviour from a GP.

fbirder
fbirder in reply to karenhath009

Callous, but not unusual.

My idiot haematologist told me that he would have said my symptoms were psychosomatic if I'd been a female! My face told him he'd made a big mistake. When I left I told him I would be ignoring everything he'd told me and I'd be telling my GP why.

karenhath009
karenhath009 in reply to fbirder

Shocking! Thanks for your reply, I'll keep you posted ♥️

Yrs it's not gone unnoticed alot of women especially are treated this way. Make wrong assumptions .

Kazania
Kazania in reply to Nackapan

😂 yes! years ago I went to the GP with a severe sore throat, he started psychoanalysing me ‘ young girl just left home, just got married, out of her depth’ sort of rubbish. I floored him when I said I’d been living and working on my own in London for years!! Really!! Where do they come from?

Nackapan
Nackapan in reply to Kazania

Yes too many assumptions made.

I know their job is difficult

I think the biggest mistake is getting Gps to do all their own admin.

I questioned one Gp about lack of info put on neurologist referral.

He replied I have to type it myself so has to be brief!!

Zc66
Zc66 in reply to Kazania

Funny reading our comment as i thoight it was just my GP being a doughnut, i got all the its anxiety/stress/depression with being a young woman who works hard, has a house to keep, children, partner and a baby to look after. Actually made me break down in the consultation room made me question myself but it was more thatbinwas realising i just wasnt getting anywhere and fealt so awful.

Kazania
Kazania in reply to Zc66

I really sympathise. Take care of yourself🥰

You know your daughter. If it doesnt feel right it isnt right.

Remember she will be scared

briarhillcat
briarhillcat in reply to fbirder

Sounds about right. Mine told me "In was all in my head" when I said I felt really poorly a couple of weeks before my injection was due. I have had pernicious Anaemia since the 1970s so should know what I am talking about. Do not let doctors wear you down, We all know our own bodies best. Take care.

Thanks for your reply. You've been dealing with it a long time!

I have indeed. I was diagnosed with it when I was diagnosed with Ulcerative Colitis, and apparently that, and others such as IBS, and Crohns can tie in with it. Hope things get better for you all. Take care. Briarhillcat

Thank you Briarhillcat. You take care too...

I will, and remember, we are all here for each other. Do not hesitate to know we are here, and understand. Briarhillcat

Thank you. I'm welling up again ♥️♥️

We are all like that with our children. No matter what age they are they are always our babies. (they do not see it like that of course!) You dont until you have one of your own. I can understand how you would want to go with her, but she knows you are supporting her. GPs unfortunately do not know everything. They do not know much about PA. It was way back in the 1940s before it was discovered that injections of B12 were the right thing to do. Before that, they used to give people raw liver (that in itself makes me shudder! Try to keep your chin up for her, and just be there to support her. My daughter and son in law are both disabled from a car accident and my son in law has M.E. and when he was diagnosed many people just called it 'man flu' and get on with it. I think it is about time doctors actually LISTENED to us. They may have degrees etc, but we know our own bodies. Do not be put off if anyone is dismissive and think they know best because they are the professionals. They can be rather daunting, but keep going and let us hope that your daughter gets the help she needs and you can both have a bit more peace of mind. Take care of yourselves and stay safe. Briarhillcat. x

I wish I could go with her! Might be an idea for her to write down her symptoms and give him a copy so that it's with her record. Isn't it curious how GPs are so well up on the symptoms of ME and CFS which are relatively new and have a name to fit the symptoms rather than a definitive disorder profile but can't diagnose something that's a proper illness with lots of research to back it up?

I went with her to the appointment for the ME Clinic expecting them to carry out medical tests. I was surprised that we met in a room with a psychotherapist. After an hour of questions she declared my daughter definitely has ME. I interjected a few times telling her that I'd had the same symptoms before my B12 diagnosis and that given my parents also had PA, couldn't they try her on injections to see if there's an improvement. I told her how it had been life changing for me. You could visibly see her heckles go up. She replied with "well you would have the same symptoms as the two conditions have the same symptoms" It took 8 months to get that appointment last December. I will write down her symptoms and endeavour to go with her. Thanks for your reply x

😡 oh my, if I had a gun, a lot of people would be dead!

Yrs it sounds like a neurologist will order a Brain MRI .

I've had 2 also had alot if those symptoms

Do not let tour Gp ignore how I'll she is

Test test test until things are ruled out and a cause found.

Even grown up daughters need help. My daughter got too I'll to think straight for herself.

My daughter was at university whe she got worse.

She was misdiagnosed with

Anxiety disorder

Fibromyalgia

Addison test after test

Unusual calcification seen on brain scan monotored

Pre cataracts monitored as a child for 2 years. No prescription glasses needed.

Clumsy

Fell over alot

Depression

The list goes on.

I like you knew thet were wrong

Once given a label they often stop looking

She didnt have a b12 blood test until 27yrs old. I thought at that time it was only if you were old or was a vegan or vegetarian . Had no idea what damage it can do.

I eventually got an appointment at The National Queens square. She had a week of tests.

POTs diagnosed.

Probably caused by undiagnosed b12 deficiency folate deficiency and macybotic anemia.

Also HEDS

From the age of 9 I kept taking her to the doctors . It was never tested .

All the fracture clinic appointments .

The trouble is eveyone works in isolation. Noone seems to pur the jigsaw together.

Now with the right 'labels' she gets the correct treatment

So many symptoms overlap.

Keep pushing. I felt like a bully at the time as noone else stood up.

Sorry for the essay but trying to be supportive

Nackapan
Nackapan in reply to Nackapan

She eadnt depressed and had long battles about that. She was ill

Nackapan thank you! the POTs really resonates with other symptoms she's been having for years! I know depression is an illness but I think the Bupa Doctor was shocked yesterday that no physical tests have been done to rule out other things. I'm hoping her GP won't ignore the recommendations of another Doctor but if she decides to carry on in the same vein, I'll have to go up there and ask for a meeting with the Practice Manager I think. You're right, she's so unwell now, she can hardly string a sentence together and all while trying to look after an energetic 2 year old boy! Thank you for your relies, really appreciate it ♥️

I know depression is an illness....

It just wasnt what she had (to make that clear)

..

She's just sent me a copy of the letter from the Bupa Doctor which ends with "Suspected diagnosis - A space-occupying lesion of the brain" A statement that surely no medical professional can ignore and not investigate further 😔 I'm so grateful for your support guys. I'll keep you posted ♥️♥️

Cherylclaire
CherylclaireForum Support in reply to karenhath009

Sorry to hear about this - and hope now that B12 deficiency will be ruled in as a possible cause without another wait/fight.

"Doctor is sticking with the ME diagnosis" - do none of them realise that B12 deficiency is this serious ? It does make you wonder if there is a need to fit symptoms to something "worse". No-one should have to pay for tests because a GP continues to follow a theory.

[And if any of us do get depressed, is it any wonder ?]

Hi Cheryl. Thanks for your reply. A lot of medical professionals really don't seem to know the severity of symptoms associated with B12 deficiency. I'm hoping a neurologist will see the family history and have a 'lightbulb' moment but if they're one of the closed minded and it's not a space occupying brain lesion like the Bupa Doctor has suggested, I don't know 😔

Cherylclaire
CherylclaireForum Support in reply to karenhath009

Well let's hope so. I went to see a neurologist - he was really nice, but confessed to not knowing much about B12 deficiency, which at the time really surprised me.

He did get me a brain MRI scan and electric nerve test- both were fine. I was quite ill at the time and I remember how difficult it was to keep track of my point, and how patient he was, allowing me to gather my thoughts and stay coherent, repeating things where necessary.

His 'lightbulb' moment made him suddenly blurt out, completely out of the blue:

"Do you yawn a lot ?" - I laughed, thinking he was getting somewhere, and said "Yes! Yes I do !" .... unfortunately, we then started off on a new tangent and I never found out what he thought that might mean for me.

Still, hoping your daughter gets him or similar !

He didn't scan my spine, because I didn't have any balance issues on manual/visual testing: MRI can also check for demyelination of nerves in spine if necessary.

Your daughter should have both. And someone to go with her.

I really could not have done it alone at the time : memory and cognitive problems, mood swings etc.

Thank you, I've said I'll go with her but not sure what the protocol is regarding taking someone to an appointment with you at the moment. I've taken your comments on board and will type something for her to take if I can't physically be there. Thanks again 😊

Yes a light bulb moment is whars needed. My daughter got that eventually but from an unexpected source. A general doctor in A and E took interest . Shed seen at least 5 or 6 neurologists. 3 rheumatologist in a and e ( cant count)

Keep going to get more tests. I'm sorry lesions were found.

My daughter had things on her brain scan and really couldt articulate well at all. Coukdnt find words. She has a degree in english. (Honours) Her uni friends were at times concerned at other thought she wad joking!!

On the positive side with the right treatment. Regular b12 injections her bright mind is back.

So please try and

Keep positive and keep pushing. I truly believe age will help her.

Take care

I have had 2 brain mris with lesions. Some are within normal limits. Get a full explanation of what they mean.

Thanks Nackapan, I've taken onboard all your suggestions and will write them on my list ♥️

I went to a neurologist in Boston at one of the top hospitals here. Long story short he basically said "if you have no other health issues and you never have and your B12 is low, it's likely B12 causing your issues. No need to look for zebras when you hear hoofbeats. "

Additionally, doing a B12 replacement treatment is not risky. She should start injections in my opinion WHILE getting checked out by a good neurologist. They will likely want to do an MRI of her brain depending on the outcome of her neurological exam. I'm not a doctor but speak from my own personal experience. I ordered my supplies from Germany.

A B12 deficiency can cause SEVERE symptoms. Most doctors don't recognize this, but the good ones do. Besides, everyone on this forum knows how bad it can turn your life upside down but also how effective treatment is.

Thanks Seth. Hopefully she'll be seeing the Neurologist in the next 2 weeks. I think if nothing comes from that, she'll be more open to trying SI. She has been advised to do that by b12.org because of family history but is refusing without her GP's support 😑

I have ended up with same problem..was having injections was stopped cus of COVID. .my symtoms got worse and my wrists and hands drove me mad.I had all the other sytoms but now I had pins and needles in my hands . Wrist pain and cramps in fingers and can't clench my right hand

Only since started injections my hand is able to shut by early morning and feels stiff and painful on 8 weekly injections. .hoping it gets better in time but I feel doctors where to slow to restart b12

Glad you're seeing improvement. The problem is, I don't think my daughter believes it could be B12 causing all these problems. I wish she would try injections. Her husband is a pharmacist so he could inject for her. Hope you continue to improve x

Zc66
Zc66 in reply to karenhath009

I was just reading through your comments and i thought i could give a list of my symptoms so you could show your daughter. Little things at first that didnt really pay attention to but more symtoms came, happening more regularly. They slowly subsided after my loading dose but now it being 2 weeks since my last injection i can feel some symptoms starting to creep back again.

So i had.... tired!! So tired like getting to lunchtime and NEEDING a sleep.

Breathless... even brushing down my sofa i would notice my breathing was not really bad but i definitely wasnt normal.

Pins and needles in mainly my feet but sometimes hands.

Random shooting pains almost like nerve misfires could almost be anywhere but mainly forearms, thighs, side of ribs, cheeks and across my forhead.

Nightsweats

Forgetfullness/in a daze alot

Hip/shoulder/rib pain (bursa)

Diarrhoea

Tinnitus

Light headed

Muscle spasms

Week legs and arms

After taking my b12 loading dose these things slowly disappeared then i almlst forgot about them... until its tine and they start creeping back.

My GP just thought im crazy and a hypochondriac with anxiety and depression.

I hope your daughter gives the injections ago as they arent harmfull, if indidnt take it into my own hands and can garentee i woudk be feeling awful right now, i also hope she gets the correct diagnosis. Good luck

Did the private chap send a copy of his letter to your daughter as well as her GP? If not request one so that if your GP refuses to refer her you can send a copy with your complaint to CCG or if you engage the help of PALS, they can have sight of it to. Here's a link to them - nhs.uk/common-health-questi...

Yes, the letter was in my daughter's inbox two hours after the video consultation. Thank you for the link that's very helpful. Is it something we would mention we're thinking of doing to the Practice Manager or straight to them? Let's hope we won't need it. Thanks again ♥️

Be guided by the GPs response, if he refuses to initiate the referral then take it to PALS, always save your weapons till you need them 😉

Thank you

Sorry to hear yoir daughter is not feeling well, great that yoi have had an appointment with a provate GP hopedully that will hell you get to the next step.

I self inject, have had no diagnosis from my GP they tell me im fine (which i am now but i wasnt) i had headaches in the morning along with tinnitus & poor balance plus night sweats. Along with nerve pains and many other syptoms including lose of grip in my right hand... would stuggle to hold a pen and drop things all the time, It is such a worry when you feel so many things are going wrong.

I am 4 months into self treatment and havent felt this well in a long time.

Hope you get some answers soon. X

karenhath009
karenhath009 in reply to Zc66

Hi, glad you are finding some relief. I hope we do find some answers. I'll keep you all posted. Thanks for replying x

dragonfly76
dragonfly76 in reply to Zc66

Hi. How often do you inject?

Zc66
Zc66 in reply to dragonfly76

So i loaded at first doing every other day for 2 weeks because i had nerve pains so bad almost everywhere in random spurs.

Its been trial and error really i could really do with injecting once every 2weeks but i get really bad acne when i have too much in my system so i stretch it out to one every 3 weeks. I get achy legs/tinnitus/snappy/night sweats when im running low again.

☺️

dragonfly76
dragonfly76 in reply to Zc66

Thank you for your time. My Naturopath prescribed 2 times a week but I take once a week.

dragonfly76
dragonfly76 in reply to Zc66

Which type of B12 injections do you take? Thank you

Zc66
Zc66 in reply to dragonfly76

Hiii, sorry for the late reply.

I use Hydroxycobalamin 😊 x

dragonfly76
dragonfly76 in reply to Zc66

Thank you

I’m so so sorry to hear about your daughters struggle to get help, I also have ME (20yrs) was put on antidepressants and told it was all in my head, referred for conegtive therapy which didn’t help. How can they treat your girl like this and sleep in there beds at night is beyond me as this is inhuman to not see her. A lady that works in Holland and Barrett told me yesterday she saw a Dr last week face to face, I was shocked, she had swollen glands - God bless you and your child I pray she gets the help she desperately needs x

Ah, thank you. Don't know why but your reply made me well up. Do you also have a B12 deficiency alongside ME? I read somewhere that studies have shown B12 injections to be helpful in alleviating symptoms in some ME sufferers? Thanks for your reply ♥️

Very sorry to hear how ill you daughter is. She is probably so ill she can’t galvanise herself into taking any kind of action (eg your suggestion re B12), so she definitely needs your and a good doctors help. As fbirder says below she definitely needs to see a neurologist immediately. Are you a member of the Pernicious Anaemia Society? Martyn Hooper would I am sure be able to help you with information and other helpful advice. I do hope that she gets to see a good practitioner as soon as possible. Take care.

karenhath009
karenhath009 in reply to Kazania

Hi Kazania, yes, exactly that. She's slurring and barely able to function. No I'm not but it's something I've been meaning to do moreso for her. Thanks for your reply ♥️

Kazania
Kazania in reply to karenhath009

Do join, as a member you will also have access to all the conference videos, which are full of information about current ongoing research and very informative. But sort a doctor first. Take care of yourself too.

Kazania
Kazania in reply to karenhath009

PS just noticed an earlier post of yours about CFS/ME. This is the first diagnosis I was given, since then hypothyroidism and Pernicious Anaemia. Although I had an atypical epstein barr diagnosis , I personally think doctors settled for CFS/ME because they didn’t have a clue. Much better on B12 injections although I think I do need the thyroxine too. Just in case this helps.

karenhath009
karenhath009 in reply to Kazania

Thank you Kazania. All very useful and noted ♥️

UPDATE GP rang my daughter today and said she wouldn't refer her on Bupa Drs say so but asked her into the surgery for some neurological tests with another GP. She's just rung my daughter to say she's referring her to a Neurologist urgently to rule out a brain tumor or cancer as there were some worrying red flags. Now I'm questioning whether it is B12 as my Mum died young from Cancet after first being told she had ME and to join a support group or get on with her life 😢 Now I just need to try and go with her. Thanks all for your support. It means the world to me ♥️

Zc66
Zc66 in reply to karenhath009

You are doing the right this supporting her all the way through this, thankfull she will be getting all the tests she needs and fingers crossed it will be something simple to cope with. The waitingbis the hardest, thoughts are with you both, good luck. ☺️

karenhath009
karenhath009 in reply to Zc66

Thank you. I really hope so. Seeing the referral letter saying "suspected brain cancer 2ww" has really freaked me out. Thanks for your thoughts. Really appreciated ♥️

Hello, am new to this board but have been very poorly with a b12 deficiency feeling so much better after supplementing B12 nearly got rid of all my symptoms I have also been a vegetarian for 25 years. Am having all my amalgam fillings removed as am sure these don't help please research they contain Mercury. Excellent video on you tube about B12 deficiency youtube.com/watch?v=BvEizyp... it's about an hour long but worth watching.

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