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Leaking like the Titanic..

scooter81

Walking Disaster Area
Sorry Ive been quiet. Things have been mental with work; new job role, duties, annual billing and all kinds of challenges.Family life has been busy, and personal life/love/relatipnship is great and going from strength to strength :) its nice.

Dreading pre-op but looking forward to it to get dates etc to close another chapter and continue with plans. The thought of another op terrifies me but its different. Has to be done, cant continue with seizures, TIA's and the other stuff. At least once a week something happens. Cant carry on with it. Oddly enough Im in better shape than ever in my life. Race for Life on 18th May, walking/cycling 4 miles to work n home
 

heavenlykaty

New Member
Wow.... your story has made me cry.....you are amazing, you so deserve peace and happiness.
You also look fantastic

take care kate x
 

scooter81

Walking Disaster Area
Ok, here we go.. Some of you will know Ive been quite unwell and had my pre-op assessment for my pace maker a couple of weeks ago with the advice of "youll get an appointment in a couple of weeks and surgery will be in upto 12 weeks"..

Since then Ive been feeling drained, lethargic, blacked out, had further seizures, pains in hands, coldness, ringing/high pitched whistling in ears, blurred vision, amongst a few symptoms. Pre-Op blood results came back and I have a bunch of ...messed up bloods which we re rechecked this week and theyve came back messy too. I have been diagnosed as having pernicious folate anaemia and severe B12 deficiency.

Now have to have B12 injections over 12 weeks, folic acid supplements amongst others and repeat bloods. The worst part of it is, my blood results that have been previously marked off as ok by medical staff at 2 hospitals and GPS are NOT ok. Glucose levels have been low, so I guess the purpose of all this is to everyone on here/out there who have at some point over the last few weeks advised thay get random low glucose levels, dizzyness, passing out etc.. to GET IT CHECKED OUT! Dont just sit there and do nothing, because as you may or may not know B12 is key to most bodily functions.

This severely debilitating, potentially life threatening deficiency can be easily diagnosed, and so easily and inexpensively treated IF our health professionals update their knowledge. If you feel odd in any way or display any of the symptoms here:

Signs and Symptoms | B12 deficiency

GO GET IT CHECKED!! Better to be safe than sorry.. On another note, they think that this whole issue with the seizures, fitting, heart stopping etc.. is to do with this. My levels have apparently been obliterated since I was released in July 2012. As B12 is important for the nervous system amongst other things it can be misdiagnosed and treated for something else. I have at one time or another since things started displayed over 25 of the symptoms. Newbies and pre-oppers, post oppers it may be worth getting a vitamin B complex tablet to help boost levels??
If what our practice nurse (and former Spires Bariatric nurse)thinks it is, my systems pretty crackered and I may not need any further surgery after all. however had it not been detected, I may have deteriorated further and as drastic or OTT as it sounds be cashing in that funeral plan Ive purchased. Take care of yourselves
 

scooter81

Walking Disaster Area
Cheers Kate, and as ever Chrisa, thanks for being there x x
 

scooter81

Walking Disaster Area
Tell me about it. Ten steps forward five back. Hopefuly this will mend things. Ive got some faith, though it may very little that were almost there. Just looking forward to my holiday in September
 

chrisa

New Member
Couldn't have picked a tougher cookie to endure this condition, YOU CAN AND WILL GET THID UNDER CONTROL. You are a go getter and fight with all ya might way to go girl keep on forging ahead.XXXX
 

emmahc1975

Active Member
Gosh you have been through the mill. I hope your back to your usual self soon.
Good advice about the b vits, its worth adding that the b12 injections are a mega high dose & the b complex are low by comparison. B12 is also harder for your body to absorb b12 through your stomach & maybe our revised tummies would exacerbate this problem.
You can get a sublingual b12 at a higher dose that the complex which you dissolve under your tongue & is absorbed directly through the lining of your mouth & is much more effective.
If anyone is thinking of taking b12 try these as well as your b vit, the worst that can happen is a boost of energy!
 

robina

New Member
Oh bless you hunni, hope to god this is the answer youve been looking for

I have a b12 spray I use as its absorbed via the lining of my mouth/throat
 

scooter81

Walking Disaster Area
Thanks ladies x

Thankfuly broke up till Tuesday. Day from hell at work, 3 of us in instead of 13. Im well and truly crackered and in need of a Nanna nap.
 

femfrankie

Shrinking For Sophie
You have had a horrendous time hun and let's hope they have finally got a grip on what's behind it all now .. I ranted about this in my diary back in early December and at least in England you are running with the new modern more accurate b12 test. Here in Scotland we are still using the highly inaccurate test that dosnt test how effective your folate levels are. You can have what appears to be a superb folate level indicating everything is tickety boo with your b12 levels but it be totally ineffective and gives a false reading.
It is sad that not only general practitioners but consultants are so laid back in their views on the whole vit b complex thing .. I include both my GP and consultant on that.
In December I can't emphasise how ill I felt ..when I look at pictures of me back then I'm almost cross eyed & looked like death warmed up. Okay I'm maybe at fault for not emphasising just how bad I really felt but the feeling I got from all concerned was that yes I was extremely low at 120 but it's wasn't really anything to be overly concerned about?? My GP was more concerned that my calcium and vit d levels were rock bottom as well. I can't go more than 8 weeks without needing a b12top up but thankfully my GP is good there and takes my word for it that it's needed so doesn't argue but I have to get it from him as protocol dictates no less than 12 weeks. The treatment nurse gets her knicks in a twist should I ask her as it shows on the central system that she has flaunted protocol and then she gets it in the neck and her job is put on the line!
Another gripe I have concerning protocol and I'm not sure if it is the same in all areas is that I can't even get my bloods rechecked until the end of June, 6 months after my last vit/mineral check because the central system knows that I had them done last December and does not allow rechecks within any 6month period!? I hasten to add my GP finds this frustrating also and did say I would have to be gravely ill before they could break that protocol which he thinks is totally nuts! So here I am faithfully taking my double vits & getting my jabs every 8 weeks and keeping fingers crossed that it's enough and praying that all will be okay come retest time.
The pernicious anaemia trust are doing a lot of campaign work to try and get the message out there to GP's and consultants but it's going to take some time to get the message heard
I wish you luck rebecca and I know it going to take a wee while but I hope they get you fixed up soon so that you can truly get on with your life. Xx
 

ChynaDoll

Member
Oh honey I'm sorry you've been having a tough time..
Really hope you're fixed and back to normal ASAP! Lots of love xxx
 

scooter81

Walking Disaster Area
An announcement to make... well several..
1) consistantly trembling hands have stopped
2) palpitations, skips, pains are fewer
3) non stop shivvering & cold feel has gone
4) nausea has gone
5) energy levels are through the roof. Feel like I have the energy of a 7 yr old!
6) blurred vision is occasional and momentarily
7) dizzyness has subsided
8) seizures have been non existent for 2 weeks!
9) blank memoryloss moments are pretty much gone
10) confusion subsided
11) headaches gone
13) no sweats, shivers, shakes, anger feelings

Yes.. A significant improvement. Not completely how it should be but my goodness, never felt this good for years! A way to go, but today everything certainly is zip-a-dee-doo-dah, zip-a-dee-eh!
 

robina

New Member
Wow hun. So pleased your turning the corner and starting to feel more like yourself. Sorry you had to go thru so much before they diagnosed you thou
 

heavenlykaty

New Member
Thats fantastic news, well done keep up the vitamins, so pleased you are through the worst x
 

femfrankie

Shrinking For Sophie
That's great news Rebecca :D Maybe now you can start enjoying the new you to it's fullest xx
 

HelenAngelfish

Well-Known Member
Great news! Xx

Sent from my iPhone using WLSurgery
 

A.Positive

New Member
Yes!!!!!!!
 
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