Dr says I'm fine...I can feel me dyin... - Pernicious Anaemi...

Pernicious Anaemia Society

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Dr says I'm fine...I can feel me dying. [USA Help Please]

Lif3sav
Lif3sav

I wish there were straight email communication to the UK from the US. I have celiac disease & pernicious anemia un-diagnosed though not for lack of effort & Dr visits. Resulting in nerve pain, so many more issues including but not limited to mental & nerve damage all now rapidly progressive, due to deficiency & adding more as my condition deteriorates..This post is scrambled at best as I add details, lose track & get lost, skipping all over the page, misspelling, losing words & phrases, inability to articulate, making corrections & rambling on as I make additions, often repeated.. Sorry for any confusion, heck I'm too confused to correct the errors but all the facts are puzzled here, to the best of my ability, jumbled, having taken most of my day so far...so this is what you get. If I try to fix it, it only messes it up worse. I need help...badly. I'm dying due to the level of my deficiency. I can't even afford the scant beginning benefit amount from the UK that gives me incomplete relief & begins healing & restructure of nerves. Even that amount is 1/3 more than my entire income. How will I live and how do I stay alive also? I need of the proper methocobalamin but have figured out an alternate but not optimal mixing of type: using Mcb prescribed amount monthly, supplemented w H-cobalamin not prescribed & accessed illegally will only cost me $155 USD to gain small amount of relief, not total healing, only slowing the deteroration of the disease. but I can't access the Hcb reliably for access though its affordable, because it's illegal without prescription even from Mexico.. I live in the center west ofthe US. A trip to Mexio is inaccessible.I have to get it illegally. The last 2 weeks...now edema. Last night my knees were the size of my head, my skin so tight I thought it would rip. I couldn't walk, shooting spasms in my hips, psoas, , cramping muscles is my back. No i'm not suicidal but if this is what I have to look forward to along with fighting with Dr's just to be told I'm fine & being denied access to specialists, no referrals granted...I don't want to linger. my mind is imprisoned, held hostage by it's own faulty syanpses, ramblings incomplete thoughts & formulas, no cohesion, I can't maintain a phone number in temporary state long enough to dial it.. often. Definitely can't explain the synapses & physiology of cells & interstitial fluid that isn't functioning, uptaking, penetrating, integrating or the substances & components in foods that integrate to complete. I cn't relate to myself. Icnnot articulate to a woman the nutritional and physiological cause of overproduction of silicon components & what the body did to assemble & eject it from her body. Certainly not explain to a woman what she has to eat to make her body stop producing it and prevent her body from pushing glass tears out her tear ducts. It's funny, I understood all those things to my soul, even in images with formula paths flowing through my brain without formal schooling and could help others heal, but because I cannot write a prescription i cannot even access the one thing I must have to remain alive, heal and be normal, much less myself. I can't help people that Dr's won't help or are too ignorant to. They are trained to treat symptoms rather than cause...they must have attended stupid school. Now all that knowledge & gift floats through my brain in shattered, severed, orphaned bits, pieces and the continuity of a thought, much less function just is'n't there. often a nightmare rather than small gift packages. I want to give these to others & it's like bad potluck. I can't relate to people even on a basic level & only have moments of lucidity. Mental exhaustion. My hands won't follow instructions {thank the programme for spell check} dammit can't locate parentheses..., I stumble and also misstep in sometimes jolted movements., scream out in pain when cramps, spasms & God knows what randomly hit on top of the continual burning, needling pain, adding to my physical exhaustion. Spiritual exhaustion. Once in a while i get snippets of me..& I'm even arguing with my kids & not recalling it, blurting out random, sometimes aggravated off the wall stuff. Sometimes in fear & curled up in the corner crying like a child. Dimensia. I have to access thru black market & that is sporadic, minute, sparce. Congratulations Monsanto! A vitamin is a felony to access without a prescription & costs more than I can scrounge in a month, double my income. I have no insurance due to inability to locate documents the Department wants to process. This past entire end-February to June 2018, finally a good solid established amount "amassed, & n established base dose to build on: Through research, trial & error, observation, documentation, experience, building on where I had run out/left-off, a few lucky breaks to access a short supply sporadically & unpredictably, abstinence till i had "saved up" enough to get a good, but scant & inefficient amount for a short 2 month run (doses ran out Mid-April 2018, but benefit didn't completely diminish/exhaust until beginning of June 2018) I've been unable to access since. It's 8/8/18 today, all symptoms returned with an added ferocity. (incidentally during the short time I had injections I returned to work earned $4,500 from Feb 28-April 10, 2018 used it to & get caught up on bills that accrued from no income since September 2017, "recieved" my SSI of $1,500 4/1/18 , which was promptly reversed & re-absorbed as an overpayment, then more than the remaining earned income garnished & so far continuing. i recieved $56 to live on in June 2018, $416 in July 2018 & ongoing am garnished to recieving only $675 per month ongoing for a while) my insurance,when i still had it, won't cover M-cobalamin at all, only Cyano (nobenefit whatso ever, no Rxn. First Dr (male) wouldn't even start, 2nd Dr (male also) changed Mcb to Cyano & reduced to 1K Mcg per month injection (at least i will not get Cyanide build-up). This was after my having to stop seeing naturopath due to him developing progressed dimansia (hes ancient old BTW). New recent (3rd & female) Dr won't refill some coping meds prescribed 20 years ago, but prescribed no more than 5k Mcg every 2 weeks (the duplicate of what my naturopath began me at 3 years ago), but thankful that the pharmacy that ships me my Rx can only distribute their smallest quantity of Mcb in 50K vials..enough for 3 doses of 15K 1TIDv X3d) of & two incredibly loving neighbors who sold me their supply & went to their sources for the limited amount they had in stock Of H-cobalamin. I stretched it out the best I could & after several times of this, running out several times, waiting for a small amount of more here & there I established that 15k Mcg Of m-cobalamin every 24 hrs ( all & over my monthly RX I had to load.. only had enough for 3 injections, at first 60 hours apart & experienced fall-off of benefits) then the 24 hour the next month, adding 15Mcg injections of the Hydroxycobalamin I got from friends efforts ( u know how hard it is to communicate to a Spanish-speaking only person to establish understanding of the need? I don't speak Spanish, but we care for one another). The M-cobalamin 15Mcg injection 3TID, X3D, followed by H-coblamin 15k Mcg stretched out at 60 hours (all i could wait between with obvious depletion) I made that stretch 2 months, results still not optimal but did experience subdued symptoms, sometimes for a day or 3 in a row, much improved, but not optimal energy, thought, function & metabolism, reduced pain , less nerve firing for a longer duration than the aforementioned symptoms in this sentence . Obviously i am severely deficient. After asking, pleading, ect for the Dr referral even to a geriatric Dr to deal with the geriatric issues I am experiencing (I was 49 at the time), I got fed up & spent half my monthly income to see a naturopath. He found just by symptom check that I was severely deficient & started me on Methocobalamin injections, slowly. I felt so much better, but not optimal & we continued to adjust...but then this naturopath developed dimensia, didn't remember things in my chart, yelled at me often when I couldn't explain why sublingual lozenges weren't something I commonly could take (I'm allergic to fake sugars, aspartame) & why him thinking the lozenges were moer affordable than the injections at the doses i needed. Those with natural sugar were more expensive than just ordering the injections 7 there was the fact that They ended up in my stomach more that in my bloodstream. I still have to take large doses of MSM to methylate enough to pass thru the blood-brain barrier into my interstitial fluids...hello they are in my mouth. He said if I kept my mouth shut for a minute they'd get where they needed...sure I can't breathe thru my nose man, of course most of it is going down my throat. foods weren't producing the result, why I Long story short, i went back to my Dr, & after 3 years Dr's won't conduct a Schillings test "too expensive" they say. Expensive?!! Is't that what my insurance is for?! Expensive is becoming too sick to continue to run my company and lose the ability to support my family, & have to be supported by SSI & medicaid. They keep testing my folate, It's great, residual unused & inaccessible B12 in my body they say is too high at 634 Mcg They find nothing wrong yet have put me on several different meds & an antidepressant/mood stabilizer, stuff for ADHD to manage symptoms. Enough. Do I just give up & be a problem to my family for a shortened remainder of my life?...Im, at times ready to just slet go, let it, too exhausted to continue to fight, to try to continue this fruitless journey.

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Foggyme
FoggymeAdministrator

lif3sav. I'm really so sorry to hear of the difficult time you're having. I doubt that there's one person here who won't identify with what you're saying - many here had to struggle to get taken seriously by their doctors - and many gave up with doctors and went down the self-treatment route, out of sheer desperation.

And oh that dying feeling - know it all too well!

I have to confess that I'm a bit lost for words here, since I am not familiar with the health system, the insurance system, or the benefits system in the USA, so it's difficult to know how best to try and help you.

The only thing that springs to mind (and which you don't touch on) is free clinics. Know there are some in then USA but don't know how plentiful, how you would access them, or if they would treat - and continue to treat - B12 deficIency/PA (if that is what you have).

If you need information about PA / B12 deficIency so that you can share it with a doctor in an attempt to educate them so they can help you, please read the the second and third PAS pinned posts (to the right of this page when you log on) which contain links to useful information. The BSCH guidelines for diagnosis and treatment (which you will find there) are obviously UK guidelines - but the principles are the same nevertheless (though the treatment regime may differ in the USA).

I note you say that one of your previous doctors thought that your B12 level of 634 was too high - well, if you were then having B12 injections, that is not actually that high (levels can be astronomical following injections, depending how long ago you had one - my serum B12 is always over 2000 - well off the top of the reference range). Once injections have been commenced, serum B12 levels can no longer be used as a marker or measure of deficiency - doctors should be assessing symptoms, not blood test results (more information about that in the PAS pinned posts).

About the exhaustion and the feeling of wanting to just let go - yes, again many here will have felt that too. Nobody can possibly imagine that kind of just exisitng, barely conscious feeling unless they've had it. And we have. And I say this so you will know that you're not alone.

If you can summon up the determination to keep going and fighting, it is possible for things to improve, and getting frequent B12 injections - enough to get and stay well - is (as you know) essential. Many here find that the best way to get doctors to take PA / B12 deficIency seriously,is to become knowledgable about the conditions and take reputable evidence along to share with doctors.

With this in mind, it's also worth taking a look at the Pernicious Anaemia Society’s Website - they are a recognised authority in this condition and the website contains information that is aimed at both medical professionals and those with PA. I believe they have, on occasion, liased with overseas members and helped them to get treatment, so might be worth contacting them to see if they can help.

Here's a link to the website:

pernicious-anaemia-society.org

Perhaps you have a relative, close friend, colleague who could read the information in the PAS pinned posts and on the PAS website, so they can understand something of the condition / issues involved and then act as a 'health buddy' by attending appointments with you to speak up on your behalf. Doctors are often more attentive and less dismissive if there is a witness present. Sadly.

As I said above, this is where I'm at a loss because I don't understand the American healthcare / benefits system (i.e. compounding pharmacists are something we do not have in the UK).

We do have quite a few forum friends in the USA so I'm going to edit the title of your post to include USA; a way of drawing their attention to your post (and your plight). Forum members from the USA will be much better placed to offer advice about how to negotiate the healthcare, insurance and benefits system. And some may be able to advise on ways to access B12 injections (at the best prices). Or perhaps on the steps they've taken to find a knowledgable doctor to diagnose and treat them. Or anything at all that will help.

I'll keep my fingers crossed the someone from across the pond can offer wiser (and more useful) words than mine. In the meantime, please know that you are not alone and that things can - and do - get better, though I expect you'll find that hard to imagine, at the moment.

Be kind to yourself and take care x

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