Still worried about symptoms and even private Dr wouldn’t listen!

[Winterlight]

I’m sorry to be asking more questions here again. Long story short I put some symptoms last year down to grief and shock of my husband dying suddenly. May this year developed neuro symptoms strange sensation in legs and arms, balance not that good, tinitis, pins and needles in lips, palpations, lightheaded plus others. Saw Gp who did bloods and told me 2-5 years ago my B12d was low at 111 but I wasn’t informed. It was 122 after my appt with her. She thought my symptoms were due to it being low and that I’ve been vegarian for 30 plus years and more recently vegan. ( I’m now not vegan)

I had 6 loading injections and felt much more normal over the next few weeks before some symptoms came back. Since then I haven’t been able to get a GP appt at the surgery it’s just impossible. I’ve also been told I cannot have anymore shots until my three months are up.

Paid to see a private GP who was lovely. Gave me a shot of B12 and refered me to a haematologist and this is where my problem lies. No disrespect to any Dr but he was so arrogant and would not listen. Nice GP said I wasn’t anaemic but he said I could be and there was no test available for PA told me to take supplements which I do then added they probably won’t help me at all !

He was not interested in my worries about having more frequent injections at all. He wanted me to see a neurologist which I can not afford after paying to see him. He said he didn’t think my B12d was low enough at 122 to cause neuro problems then he admitted it was extremely low at the time. Since I’ve had the loading shots it went up and was normal but I still do not feel right. My muscles in my legs and arms feel light and weak and they are wasted. I am getting one cold after another. And I feel like I’m not really here. The nice GP mentioned I could have PSTD too and she said I was malnourished I know this is because of losing my husband. It’s been so hard.

All this Haematologist has done is cause me worry I’m now thinking I have something else going on and it’s not my B12 because he said I should be investigated for other things. But I feel so much better when had the injection even the one I had last week I felt normal a few days later but it doesn’t last even though my levels are good right now.

I would appreciate anyone’s comments. Sorry this is so long.

[Winterlight]

Sorry for typos my iPad seems to add the letter d to B12 🧐

[clivealive Forum Support]

Hi Winterlight if your B12 was 122 whatever was the range <From - To> that the Haematologist reckoned that yours was not "low enough at 122 to cause neuro problems"?

I think your IPad thinks B12d is an abbreviation often used on here for B12 Deficiency.

Was your Folate level ever tested?

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

P.S. Being widowed suddenly is enough to knock anyone sideways - it happened to me 25 years ago and I still miss her every day.

[Winterlight in reply to clivealive]

Thank you Clivealive For your reply. I am going to be looking into my results it’s been too hectic today worksise.

I’m so sorry you lost your wife suddenly too. It’s so hard isn’t it and I didn’t expect to be widowed in my 50s I’m finding this second year even harder than the first. I’m certain all the suppressed grief and shock has made my health worse.

Wishing you well too.

[clivealive Forum Support in reply to Winterlight]

My first wife underwent open heart surgery (for a valve replacement) from which she never regained consciousness and she died 3 days later - just five days after our 27th anniversary. So I was faced with a succession of mail, starting with congratulations, best wishes for your operation, get well and sorry for your loss cards.

We'd been told that the operation would have a 95% chance of success but as my younger daughter wailed at the time "why was my Mum the five percent?"

I was 51 when I became a widower but I have been blessed in having been remarried (four years later) for 22 years to my now wife whom I met at Tescos where she served me on the checkout. She is nine years younger than I am, was deserted by her husband 15 years previously, leaving her to raise their five year old daughter singlehandedly.

So now I have a forty year old stepdaughter in addition to my my own two fifty (plus) year old daughters and a total of six grandchildren - each having two.

I was determined that I was not going to sit at home alone and back in 1992 there was no online dating facility as there is today. So I travelled extensively visiting churches of the same denomination and built up a network of "pen-friends" but at the end of the day found success at my local supermarket where I went shopping every Friday afternoon. She looked so neat and petite in her then red/white spotted dress that I literally said to myself as I joined the end of her queue "I could live with that". At Christmas time in 1995 I dropped a card on her table which read:

Now in this season of peace and goodwill,

It's time to remember the girl on the till.

She chats as she wraps and then tots up my bill

And although I'm not certain - I think her name's Gill.

I feel no guilt or disloyalty as Valerie and I both acknowledged that we were a "pair of old crocks" - me with my gastrectomy at the age of 17 and the P.A. and she with her faulty aortic valve caused by rheumatic fever when she was sixteen so we had an agreement that "if the worst should happen..." we were both free to "find someone else". I still love her as much today as I ever did and she is still in my heart and I wrote this poem shortly after her death.

Remember love shared

With that other who cared

So much did you cherish ~

Those feelings won't perish.

With memories to treasure

Recall only the pleasures

Cling fast to the gladnesses

Loose hold on the sadnesses.

Though now you're alone

Pray God's Will to be done

Value with certainty

New life ~ through eternity.

At God's Mercy Seat

There she shall you meet ~

Join hands and then savour

The Grace of your Saviour.

Then with life full restored

Enter the Joy of your Lord

With that other who cared

And Remember Love Shared,

I obviously don't know your religious beliefs Winterlight but the above reflect mine that God Willing we will see our loved ones again when Christ returns. In the meantime our lives must go on to the best of our abilities.

I hope I have not offended you by telling you my story.

[Winterlight in reply to clivealive]

Wow what a beautiful love story Clivealive 😊 Thank you so much for sharing it and of course I’m not offended. I’m just so happy to know you found some happiness again with such a special lady after all you have been though. It’s lovely that there is no guilt too and certainly no need for it! Your Valerie as you know would never want you to go through life alone. I think it’s a beautiful beginning to a very sad time that you suffered.

Your poem is beautiful too. And yes our lives have to go on. I wish you and your lovely wife and family much happiness and again thank you for sharing your story 😊

[fbirder]

You must have seen the same haematologist as me, arrogant twerp.

I’m surprised your docs haven’t suggested that your B12 deficiency may be due to diet. It’s not at all uncommon for vegetarians to be deficient and quite common for vegans.

It might be worth trying some B12 tablets for a month or two, say 1000 mcg twice a week.

[Winterlight]

Thank you for your reply you could be right fbirder 😁what absolute arrogant twerps they are !

The original Dr I saw at my practice did say my diet had probably caused it but trying to see her again is like trying to get blood out of a stone! No appointments at all whatever time I call or call in there which isn’t easy it’s quite a walk.

I’m taking a B12 spray at the moment but have wondered if I’d be better taking the 1000mcg tablets. Some vitamin tablets make me feel sick do you think these are likely too?

Like I say according to Dr Arrogant anything I try may not help! But he had no suggestions either I’m so annoyed! I’d like him to have ten minutes of one of his legs feeling like he’s wearing a stocking over his trousers today like I feel I have then I bet he’d be looking into his B12 levels :/