Hypochondria?

[sarahjaneR]

Saw my GP today and was told all my bloods are fine. Asked him about the "bad" days i have now and then and he said that a lot of people with PA tend to blame every other symptom they have on their PA and that most of the time it's just hypochondria. I remember when i first went to him about my tiredness and he put it down to stress and only checked for PA when i asked for a blood test. Now i'm confused as to what is "real" and what is not whenever i have these off days.

[BlueBoyMico]

Wish I could say something that would 'lift' you but I'm on day 6 of B12 oral high doses and having the 'I'm dying' feelings, wrecked and weak as a dead duck and terrified, I'm telling myself this is normal for loading stage so I doubt anything I say would benefit you other than, if you're experienced in P.A. life you must know tomorrow is another day and an opportunity to have a better day? x

[sarahjaneR in reply to BlueBoyMico]

I'm thinking of taking some folic acid 400mg a day, even though my doctor says my blood results are fine and that i don't need anything else for my PA, i've heard some good things about folic acid and from what i've heard that dosage shouldnt do any harm and might just help. So much information and advice on PA online, it's hard to know what to do sometimes.

[clivealive Forum Support]

Hi sarahjaneR your doctor saying "that a lot of people with PA tend to blame every other symptom they have on their PA and that most of the time it's just hypochondria." is an easy "get out".

Firstly if there are so many P.A. patients all saying the same thing there must be some substance to it.

Secondly, unless he has P.A. himself he cannot possibly know the fluctuations in neurological symptoms between injections as the "one size fits all" prescribed intervals of injections simply don't suit everyone.

For many of the 46 years I've had P.A. I noticed a return of symptoms in the run up to my next scheduled injection - which can't just be a coincidence - and I've managed to persuade my G.P. to increase the frequency of my cyanocobamalin injections from every four weeks to now every three weeks.

Of course there may be other causes of your "bad days" and "tiredness" but it is your doctor's job to discover the reasons rather than just writing you off as an hypochondriac. My heart goes out to you.

[sarahjaneR]

Thank you. It's so hard, when all he does is wave the results and says everything's fine. He asks if I get any tingling nor numbness in hands or feet and as I don't he just says then all is well! Obviously it isn't on the bad days lol.

[sarahjaneR]

I might do that because I've never seen any of the results and I'm not sure I would know what they meant if I did see them. He thinks the bad days I have are not related to my PA yet tells me everything else is fine, blood pressure, glucose , weight, diet, fitness etc.

[Fudgemanjim]

If it makes you feel any better i was told for the past ten years symptoms were in my head and PA has no sid effects , i was told more injections would give me cancer,,, i pushed myself to work, i was told to try and go lo ger and longer without it and to prush for longer...when i went longer theyd say see you dont need it at all....they halfed ny dose withot saying... talked down to me... i wound up with very painful chest and heart pain for a year which they said was in my head then to treat with alchol, then codiene, then they said phenomia even though they couldnt find a sighn of actual phenomia they just said all they could think it would be, then it was a warped rib from birth... i had 2 specialists over 2 years booked and canceled..called hypercondriac wasting there time. i was also diagnosed bipolar and given phycotics for a year or 2. . Then phyc said no ill ess and was PA but GP ignored her..

.it wasent until my french partner came with me and was sickened by how the doctors treated me ,,, she said they were negligant and made me see her doctors in paris who instantly told me all ny problems seemed to be PA related and couldnt understand how NHS doctors missed it knowing i had PA from birth...

I have officially given up on my drs here in UK , after memtioning all this too them they suggested i move there if there better and we are doing just that next month just for the doctorsas the UK ones let me get to stage of being in wheelchair and needing a stick (im 29) and unble to work... since traveling to paris and seeing doctors that understand ive get jabs AS SYMPTOMS SHOW , and am having CT scans among other things just to detirmine the damage thats been done by gettimg injections not nearly enough for so very long (they think theres likley damage to heart and stomache... and definitley minor damage to lungs... to be honest we are building evidence and as hard as it may be we plan to try and sue... hearing doctors doing simlar stuff to others gets me so angry. Because i loved my job and was very active and all the warnings (that i mentioned everytime i saw dr) was ignored, wrongly asmore regular b12 treatment has made a HUGE diffrence (docs in paris tell me one per 2 month kept me alive but my organs wete slowly dying in the simplist of terms

Ive been PA my whole life and these past 2 yers have been very bad and painful and scary...and to think how much i was ignored...

I cant give any advice other than the people on here are very knollegable amd helpfull as is PAS... if you speak french or know someone who does id suggest seeing doctors there as i have as ones ive found are far more helpfull (if it wernt for them id still bw in a chair and agony... now its just a stick and occasional pain and discomfort when jab is needed... oh and foggyness and dementia like symptoms for want of a better word...but ill tackle that once ive moved) once its done im good for nearly a week sometimes... well much better than before anyway its a long road)

[Fudgemanjim in reply to Fudgemanjim]

Just to point out i do obviously still have bad days... i had one a few days back and did a little rant on here as it got me down a bit.... if things can be fixed and its not permenant (may be unlikley) itll take a longtime and as clive alive says things can get worse before they get better... my point is the bad times are NOTHING compared to what i was going through a few months back... we were preparing for the most macarb of things.... nice thingis it does give one a appreciation of things... theres no greater high or joy than when pain or symptoms stop or are relived in my opinion... just being like old me even for a few days best of luck to you a d i hope things improve for you and doctors start listening or you find somthing that works... many on here self treat via ordering b12 online... i personally distrust this but i do self inject... just with it perscribed b12 picked up abroad

[wedgewood in reply to Fudgemanjim]

Honestly no need to distrust ordering B12 ampoules online (Hydroxocobalamin ) There are several very professional German online pharmacies . I use versandapo app.de in English .First rate and reasonable . No prescription needed in Germany .

[sarahjaneR]

I know how you feel. It annoyed me that he thought it was probably in my head. I'm not one to go to the doctors unless i really have to. I'm beginning to think he's read the guidelines for PA and nothing else.

[Fudgemanjim in reply to sarahjaneR]

Yes, my worry is your symptoms worsening to the point they did with me, and still not being listened too... i lost so much that im trying to gain back and dont know if i will ... but for more people to go downhill so much when theres no need for it worrys me...of course everyones diffrent and hey so.e people function great on 3 monthly ... 2 monthly and so on...id just say keep an eye on symptoms... im still scared of going how i was or for so eo e else to go that way unessicerially

[Fudgemanjim]

Anyway ill shhh now , probably creating unessary worry which is not my intention best of luck

[sarahjaneR in reply to Fudgemanjim]

thank you, I'm not worried just annoyed at his attitude

[Fudgemanjim]

Haha this makes me smile... had the exact same thing....as in even the same sentence of "we dont do that here" and then of course not doing that... i wo der if thats a trained response to being shown PA or NICE guidlines xD

[raelenejones]

I feel your pain. I've come out of the Dr's surgery in tears after being offered anti depressants to help with the symptoms she said were in my head. Now I self inject and have a new lease on life. I'm in control of my PA and it feels great. Hang in there. You're among great people on this site.

[jointpain]

I understand how you feel, for the past twenty odd years I am sure my doctors had hypochondria written on my file! Anyway I changed Doctor surgery two weeks ago, and have been treated really well, but the new doctor hasn't received my file yet, so it could all change? The last but one time I saw my old docto I saw a locum who believed everything I said, hence the B12 test (first time ever) once I knew what it was and that it was low everything made sense I then saw my normal doctor who said everything was normal. I knew different by then. Changed doctors, took sublingual b12 had another test after a month, and b12 is up from 178 to 452 and I feel so much better. And so happy I changed doctors.

I used to complain to my previous doctor that though the test he had done were normal. It must mean he wasn't doing the right tests. Hence the hypo label I'm sure.

Hope everything goes well for you. Xxx

[sarahjaneR]

thank you all for taking time to reply x

[Hidden]

33 years ago our 19yr old son got over enthusiastic with the throttle on his recently acquired Suzuki X7 250cc Isle of Mann tuned motorcyle, made close contact with an 18" square brick gate post and died of multiple internal injuries and broken bones 6 hours later on an operating table. For the next 5 years every time any of us, me, Mom, daughter and younger son went to see our GP's we were patted on the head and sent off with tranquilisers as it was just delayed grief. We had to have a serious talk with the senior partner who fortunately was a very reasonable guy to make sure they understood we were not still in deep mourning.

They do like to get fixed ideas into their heads do some of the GP's - I think it saves them having to think.

[sarahjaneR in reply to Hidden]

I agree, they can be very patronizing. I'm sure he would like to pat me on the head and say "there there, run along now"

[Frodo]

Conversely, when you have a named condition, doctors will also put down new symptoms that you think need investigation down to the condition you already have if it suits their agenda. For example, in my case, everything is due to migraine apparently (even a tooth problem - the dentist insisted it was migraine) so therefore it isn't 'serious'.

I think this is probably what's called 'patient management' or 'managing patient expectations'. Some doctors do it in a nicer, more tactful way but they all do it.

We've discussed the issue of being told one has hypochondria (or even 'cyberchondria') in the forums before - it's psychologically abusive ('gaslighting') and does result, as you've found, in questioning one's own reality and perception. I have experienced this a lot, as have other family members who have difficult to treat autoimmune disorders.

I think another issue arising is that being treated in this way naturally makes one anxious in medical appointments, which inevitably leads to a label of anxiety on top of the hypochondria.

[sarahjaneR in reply to Frodo]

I agree, what makes me it worse for me is that I've had to find out about my PA through the internet as my doctor thinks it's enough just to tell me that I have PA and that the B12 injections will put everything right. Thank God for forums like this.