Hello, I have PA, inject myself every two weeks, and it still isn't enough. My history is convoluted and probably pretty typical for people in the USA. I read what people go through in the UK and want to cry, because what exists there is still ages ahead of treatment in the US. Most of what I've learned has come from sites like this, based in the UK. Here is more like a desert.
My current GP is from Ireland, so he is sympathetic, but he still has to work within the system. I buy my b12 from Canada just to be able to get what I need, and to afford it.
I just wanted to say hi, not ramble, so HI and I'll be around, reading posts, and commenting if I have anything useful to add.
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Linda730
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Great to have you Linda 730 . You are very welcome !
So are you able to get the Hydroxocobalamin form of B12 ampoules from Canada ? I have a feeling that you can only get Cynocobalamin. Hydroxocobalamin is the form that is used here , and it’s supposed to stay in the system longer than Cynocobalamin . But why don’t you inject more often if you need to? You cannot overdose and there are scientific documents about that that you can read, published by Stichting Tekort ..Look through “pinned posts “ in the right-hand column. If you wanted to try Hydroxocobalamin, there is a German online pharmacy which will ship to USA ( it’s the only one I know of ). It means that a 1mg ampoule costs about $1.50 if you buy 100 ,with shipping included . It’s called mycare.de if you are interested . Very best wishes to you .
Thanks for the information. I haven't tried to by the hydroxo form yet because the price is too high for my budget, but I had read it was definitely the better version to get. I also don't inject more often then bi-weekly because of cost, and I'm so tired of shots :). I'll check out the German site. I currently buy a 10mg vial, less loss at the end. The small vials always come out short for me.
Still looking for another form than cyano. I tried the German site, but it was too confusing to me.
Welcome, Linda730. I am so sorry you are suffering from PA and from ignorance of the learning that the best indication for treatment is how the patient is feeling.
I know what you mean. Most of my learning, too, about PA has been from the UK people, and only since my diagnosis. I cannot tell you how thankful I am for the Pernicious Anaemia Society and its efforts to support us and to educate the World about this affliction. I count them as among my greatest blessings. I would feel very alone as to my (disease experience and much of my disability experience) situation -- but for PASoc and this group of fellow sufferers.
It took over thirty-seven years of trying from the conspicuous start of my symptoms to get diagnosed and treated. By then I had permanent neurological complications. I am doing appreciably better than I was then, but I do not expect to have anything near a full recovery. I am also a US person.
My treatment was started a little over nine years ago. After my loading shots, I had monthly shots for a long time. My condition was worsening, so my shots were increased to every three weeks. My condition still worsened over time, but more slowly than before. Etc.; etc. over the years. Last year my shot schedule was increased to two a week. After a few more months, I felt better, and I feel my treatment is adequate at the present rate.
We have some members who need their shots more frequently.
I, too, have permanent neurological damage. I think my symptoms started when I was 25 or so, but I went nowhere trying to figure out what was happening. I went the rounds with doctors saying it was all in my head... I got so angry I stopped looking for help for awhile. Then I started with incontinence problems in my early 30s, which eventually lead to MS. When that was ruled out, I tried a MS specialist, who found the b12 problem. But he wasn't a communicator, so I still don't know how he found out, although I assume it was from a blood test. All he said was tell your GP you need shots for the rest of your life.
I never had loading shots, and the once monthly shots I did get did nothing to change my symptoms, so I stopped my shots, after informing my doctor, and he didn't relate any reasons why I should keep getting them. Of course, I kept getting worse, until I lost my job from falling asleep at work, and lost my ability to focus and multitask. Then my symptoms progressed to what looked like dementia to me.
Something I read or saw gave me an aha moment... lack of b12 can cause dementia. So, I went back to my GP and convinced him to restart my shots, even though I had no insurance and he couldn't test first. I also talked him into bi-weekly. It took about a year, but I started to improve (once again, no loading shots). Now I would say some things have definitely improved, other things continue to decline, but very slowly. Unless I'm under extreme stress.
At this point, I really should increase the frequency of my shots. But I also have memory problems, so I worry about confusing myself. Sounds silly, doesn't it? But I don't adapt well anymore. And at the moment I don't have anyone helping me.
So, I really appreciate the group (I actually joined PAS years ago), and now that I've found the chat, it should be even better. We all need encouragement and guidance.
Your comment about having no insurance is a damning indictment of your county's continued refusal to consider a single payer universal national health scheme and reliance on the profit oriented private mish mash you now suffer from. We think we are badly done by because our GP's are throttled by lack of knowledge and a restrictive license for the Hydroxocobalamin we so desperately need but we do at least have the relatively easy option of personal import from Germany for our supplies and it just 50pence a shot, plus the cost of the equipment (about 17pence) it is well within the scope of most sufferers to finance.
Over the past 5 years or so I have had conversations with people in your country and in an online forum about American heathcare and if nothing else it makes me appreciate to wonderful boon we have here in our NHS. Ever since it was started it has always had it's problems, usually with funding or insufficient capacity, and I would expect it always will but it has never actually let most of us down. Until visiting Florida in 2012 I had never heard of such weird a thing as by-pay and pre-existing conditions were only a feature of travel insurance. Nor had I even heard of people declaring bankruptcy because they couldn't pay medical bills so when I saw figures of 600,000 people having done so in a year it was so very shocking. Our people don't know just how lucky they are to be living in UK where they might need to be worried about a health matter but not how they are going to pay for it. If we can help by encouraging and chatting then bring it on.
Sorry for not replying sooner. I, too, have the time problems kewpie has. And I do anything I can to avoid stress. Sometimes 'normal' things like replying to posts is stressful
Now I am on Medicare, but they don't cover the costs of b12 unless I get per dose bottles, and then I still have to pay $7 or so for it. That's a cost of $70 compared to the $15 I pay online (plus syringes + shipping/handling). I am going to increase to once a week. I'll manage; I always seem to.
Linda -- I also have some dementia. It is frustrating and embarrassing. I am going to be vague about it here. I can learn some new things, but not how to do any new things, and not new ways of doing things. I am still quite challenged as to word retrieval, and I am *slow* otherwise. I can generally *pass* if I keep my mouth shut and nod. I have serious memory issues, and my sense of time -- especially calendar time -- is very different from before my neuro complications started.
I use a largish book-like date planner calendar kept open on the counter to keep track of my dosing of my (most of them forgettable) medicines. I make marks in it to signify and to remind myself that I have had whatever dosing. Then I have to keep checking it to see if I have had my medicine, because I often completely forget, even after that reminding. My husband has a cell phone with a reminder alarm feature that is set to alarm at the same time every evening for my cancer medicine dosing. He knows not to speak to me or otherwise distract me between the time I take my medicine/s and the time I mark the calendar just after my dosing -- any little distraction might totally throw off my focus and make me forget what I am doing.
I have two friends -- one on shots for diagnosed deficiency, one not -- who supplement with Vitamin World Methylcobalamin 5000 mcg. B-12 sublingual microlozenges from Vitamin World stores. The one in deficiency treatment is very active and uses a few of the microlozenges daily.
Another friend who is usually more tired and on shots for diagnosed deficiency supplements with Sundown Naturals Sublingual B Complex with cyanocobalamin B-12. It is available in some supermarkets.
Kcbrecks -- Yes, it is a national disgrace, that a Country with even so much money to waste does not even provide necessary health care for all its people.
There are some "social safety net" programs for the poorest of the indigent, and there is Medicare health care coverage for seniors and some (not all) disabled other adults. The Medicare coverage is more affordable than most health care insurance, but it does not have a catastrophic cap/maximum on out-of-pocket expenses, so to keep health care costs under some control (some certainty as to limits of costs not covered thereby), seniors need to have supplemental insurance also or risk financial ruin. Those who can least afford high health care costs -- the uninsured -- are often charged several times the usual/real rates (the real/insurance-covered charges reduced/limited by insurance contracts in all the cases of insured patients) by their health care Providers.
kewpie, you and I seem to have a lot in common. I was working in IT when my symptoms got so bad that I ended up losing my job. Like, falling asleep as if I had narcolepsy. I still fall asleep, still can't focus on things... reading is more of a pain than a pleasure (and I was always a reader). I definitely would not be able to work any more, although I wish I could. Lately, my legs have been the biggest issue. Peripheral neuropathy, which I might have had since I was mid 20s, a few years after I first lost my memory, has made walking slow and unsteady. Weakness in my legs means it's hard to go up and down steps, near impossible to take walks alone, almost certain to lead to falls. I've been falling since my 20s, had other symptoms show in my early 30s, was diagnosed as MS in my mid 30s, then b12 deficiency late 30s? That's a long enough time for permanent damage.
I had hoped I'd at least level off after I started with shots, but as I keep learning more about b12 deficiencies, the more I realize we know so little. And I probably have utilization issues. High levels of b12 in the blood but symptoms continue to progress? I'm going to see if I can get an MMA test, maybe a gene test for MTHFR (which will involve more research to understand results). This would be so much easier if a doctor was directing me instead of me directing my doctor.
I'm having a lot of trouble typing accurately today, so I'm probably going to have a frustrating day today. The worst aspect: I spend way too much time thinking about myself.
Sublinguals doing do me much good except maybe in a crisis. And I totally understand about being distracted, and have a routine for making sure you take your meds. I still miss mine sometimes, but mark them as taken... duh. (I use an app to record and remind me).
In regards to memory, I think k I might have anterograde amnesia, but how to get it confirmed is the next question. Why do we seem to find answers that seem so obvious in retrospect, yet trained doctors are oblivious?
Hi Linda, like you I have several autoimmune diseases. I am trying to knock them off one by one so that they are either treatable or allow some parts of me to go into remission.
It will be good when some of our diseases start to repair damage and make those parts like they were before having that disease. I know that’s what a lit of Pharmaceutical companies are aiming for & know of one disease where this has actually happened. There may be more I just dont know about them
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