Desire for isolation

Allergies, blood and immune system
1

Hey, ive been diagnosed with PA for almost a year now. I get the regular B12 shots every 3 months which to me I dont think helps me at all. I have told people close to me about me being diagnosed but people just pass it off as something silly and dont really understand how much it affects me.

I have the desire for being isolated, I would rather spend time on my own and stay in and I get called boring for it.

Does anyone else feel like this? if so whats the best way to deal with it. How can I explain to people that im not just using it as an excuse so they understand that I havent got the energy to do what they do?!

2

Hi Vickie,

I wonder if your B12 deficiency is causing depression. 

Being profoundly exhausted (and having your symptoms dismissed by ignorant people, who don't understand how damaging B12 deficiency can be) would be easily enough to cause depression. 

My B12 deficiency made me exhaused, exasperated and very, very cross.  The difference is probably a question of our underlying personalities. It was useful when I had to power my way through the red tape of my GP's surgery to get to some decent treatment.  I wish I could lend you a bit of my "ggggrrrrrrrrrr"!  : )

It sounds like the treatment you are receiving isn't hitting the spot.  Go back to your GP and ask for blood testing to determine your present B12 and Folate levels, plus your Haemoglobin, Red Cell and Ferritin levels.  It wouldn't hurt to have a full spectrum, to make sure there's nothing else wrong. 

Ask for a printout, and do your own research into what levels should be online.  Low iron may be fixable with tablets - cheap as chips.  Low folate will mean you can't re-cycle B12, and must also be addressed.  Low B12 causes knock-on deficiencies in other vitamins.

Explain - firmly - to your GP that you are still not feeling well, and that this is making you withdrawn.  Lay it on thick.  Tell them that, internationally, a minimum B12 reading of 500 is standard, and that over 700 desireable.  Do not accept the present NHS nonsense about 190.  If quarterly jabs won't achieve this, go to monthly (that's what I get, on the NHS).  If that doesn't do it, then you should be looking for other causes of your anaemia, like bleeding in the bowel.  You need iron tablets as well as B12 jabs if your iron is low. 

If you still don't get better, then your GP should be looking at different formulations of the injected B12 (Cobalamine) which you may absorb more readily.

Depression COULD be an early sign of neurological damage, and left long enough, it will be permanent.  Currently, it is generally felt that B12 deficiency may have a significant part to play in the development of senile dementia.

Gather yourself, grab this problem by the throat and shake it hard.  It can easily be subdued.  : )   Chin up.

3

Wow thank you so much for your reply. I dont know why I didnt sign up a year ago because I probably would've felt a lot more at ease!!

I get called lazy a lot but I am honestly not lazy I do a lot of rushing around but obviously I get very tired sometimes and just cant be bothered to do a single thing. 

Thank god im not alone mine also makes me very cross and angry it winds me up! I dont mean to come out in a massive aggressive way and I try my best not to but it just happens!

Its definitely not helping and I feel like everytime I go back to the doctors they do nothing about it. Can you just ask for another blood test? I dont want to feel like im wasting their time.

I grately appreciate your response its helped me!

4

Trying to more or less drag yourself around is depressing and doesn't give much inclination to go out socially. And the various jobs left undone are also depressing.

You should feel much better if your PA is treated adequately. Different people require different amounts and as I understand it the 3 monthly treatment is for those who are deficient ie just low as a preventative, while for those who cannot absorb it higher levels are required in some cases more than monthly until you respond,

You may also have other underlying issues causing problems. In the first place you need to spell out to your dr just how you feel like 10% or 20% functioning. You may also subsequently need to do your own explorations as to the answer for you. You will find ideas in some of the other threads.

It is not a matter of being demanding, rather communicating the issue. If then they do not perform as is common you will have to explore further. This is common in PA and CFS.

Go for it! how many lives do you think you have?

5

Thanks for responding Chris!

I think it all relates down to being treated differently. I think I need a regular dose of B12 or them to look more into my issue. When I first went to them it was because I thought I had MS as my mum has it. I think that PA mimics MS so im still unsure on if they have actually diagnosed me with the right thing.

Thank you! I will definitely be booking an appointment to get to the bottom of it.

6

Hi Vickie, so sorry to hear you are feeling so bad. GP's seem very reluctant to do anything other than three monthly injections. I have bought a sublingual spray to use when I feel I'm slowing down, before I get my next jab. I also take a good multi vitamin, because often we are low in those too.

it can be a struggle to keep up when you have low B12, try to get something printed out from the Internet to show your friends just how it can feel. I try to pace myself, a day out, then a rest day. We had a week away with friends recently, and I felt I needed two days in bed to recover. I didn't have two days in bed, but went to bed early, and made sure I got a nap in the afternoon. Good luck with everything Marion

7

Hi Marion thanks for your response!

Yes they do seem very reluctant to do anything. It took me a good 3-4 visits before I was told I could finally get a blood test! 

I agree its definitely a struggle to keep up, its just frustrating that its an illness that no one can see so they dont know how we feel. I dont really know how to explain to people who are my friends how I feel with this illness as I dont want to feel as though im looking for attention!

Thats a good idea, I might start pacing myself out. Thank you so much! Good luck to you too.

8

Wow, Vickie - I'm so sorry it's affecting you so deeply in so many ways! I agree with the others to push on your Dr. - seek a new one if s/he won't change the course of treatment.  You need what you need!

To that end, you may need quiet.  I find I'm really bothered with noise and I never realized how very loud my two young sons can be!  It all made sense when I was reading about PA last month. Small things that didn't bother us in the past could get to us very quickly now. It's not easy to understand at all if you're not experiencing it.  Before my diagnosis I couldn't understand it myself!!  You're really NOT alone!

I was afraid I had MS symptoms, too!  Learning about PA was SUCH a relief!  The injections may not be a magic bullet, but there's a light at the end of the treatment tunnel.  I'm sorry your mum has this and I pray that you don't - and won't.   Hang Tough and Hang in There!

9

Thank you again for responding! I do need to start pushing more. I just tried to book an appointment all booked up for the next two weeks - ridiculous! 

Oh no that must be quite frustrating for you as obviously they dont mean to be loud! Sorry to here that! Its scary isnt it to think it could be MS! Thats very true there is a light at the end of the tunnel.

Thank you, hang in there too!! ♥

10

Two weeks to get an appointment and 3-4 shots to get a blood test - that's unbelievable, and hardly satisfying for the drs.

Here it is 2 days, or same day if urgent, and once or twice I have had to say I am coming now.

I really think that whoever is responsible should be held to account. The only thing that seems to work is being held to account. In the first place by writing to the minister of health, the local mp, the health and disability commissioner or whoeveer has some oversight. Keep copies of everything. Then contact the local newspaper and tv and get them to do a story (not on your case but on the inadequate health services).

I have also invested in a small digital recorder although I have not used it yet, I can see that it could be useful, for one thing because dr's notes are very often appallingly inaccurate. However that is a side issue.

My point is that if health services are inadequate those who profit from that situation depend on passivity to be allowed to continue that.