Bizarre aches and pains with PA

[expatkerry]

Hello all,

I suspect that the strange sensations I'm suffering from at night are all part and parcel of this, but thought I'd ask if anyone else has these symptoms. I wake at night with 'buzzing feelings that start in the thorax and spread down my arms. I also get a buzzing feeling in a band across the bottom of my back which is a weak spot, it intensifies until it becomes painful. I feel certain it's the nervous system as 20 minutes of deep breathing often eleviates the pain. I've also made a connection between the frequency of the pain and my diet; if I eat sugar I'm almost sure to get the pain and bizarre sensations. I'm currently being treated for PA (but not adequately) my doctor has prescribed three monthly injections (no loading doses) and seems to think it's enough as my B12 reading was 257. I've had just one and the beneficial effects wore off after 3 weeks. I'm seeing her end of January and hope to persuade her to change the treatment, I'm going to ask foran MMA test and homocysteine.

[deniseinmilden]

I suggest you see someone sooner and get yourself more B12 ASAP!

[expatkerry in reply to deniseinmilden]

I agree Denise but it's not so easy to do (as everyone here can testify) I'd wait a couple of months for another appointment and the next doctor will probably be as cautious. My doctor does listen which is something so I'm hopeful. I am tempted to go 'maverick' and treat myself but then you're on your own with no follow up. I'm keeping this option as my last resort.

[deniseinmilden in reply to expatkerry]

I've done it. I'm sure I would be dead by now if I hadn't. What is the cost of better health vs permanent damage?

Why can't you see your Dr again sooner?

[expatkerry in reply to deniseinmilden]

She's a specialist so appointments aren't easy to get. She wants to see how the treatment is going (badly!) and she's prescribed blood tests every two months, I'm hoping the tests will support my point of view. She did say she would do the MMA and the homocysteine test in the Summer, but when she offered me the jabs I was so pleased I forgot to remind her to do them. Next week is jab week so there's some relief on the horizon!

[deniseinmilden in reply to expatkerry]

Thank you for your reply : I understand now.

I really sympathise and so hope you can get the level of treatment you need to get and keep well.

Have you got the BCSH guidelines for B12 deficiency which say to treat neurological symptoms every other day until they are resolved? It's important, as is doing this again if they reoccur.

It is also important to explore all avenues in case one problem is masking others.

Very best wishes to you! x

[expatkerry in reply to deniseinmilden]

Thanks Denise, with a bit of luck I'll get what I need. I live in France but the attitude to B12 seems to be the same as in the UK. Did you have any difficulty getting the right treatment ?

[deniseinmilden in reply to expatkerry]

Yes, lots. 20+ years of living with a diagnosis of chronic fatigue syndrome instead of B12d and then a year of increasingly acute symptoms until in mid July I couldn't walk or talk. Fortunately I had got things sorted by that stage so it was only a case of actually doing the daily injections and taking lots of additional sublinguals and supporting supplements to get me well again.

And I am good at constructing a considered argument for something and my Dr is one of the best! If not I would have had to have just bought everything online. The trouble was I was really too ill to get my head round doing that then. I will order some now to use in case my NHS supplies get stopped for any reason.

For me, because I had got so bad, I now can't go more than a few hours without taking some more B12. However if I constantly top up I can live and work relatively symptom free. It is amazing!!

If it wasn't for the people on here I am sure I would have died.

Good luck! X

[Pupi11717 in reply to deniseinmilden]

I am very surprised with how bad things got for you. I am now understanding this condition and am a little afraid of how tired I have been feeling lately. My neurologizal symptoms (numbness, pins & needles) are also scaring me. 🤦‍♀️

[deniseinmilden in reply to Pupi11717]

Well that was 5 years ago and I'm approaching 6 years of treatment now. I can't believe how much better my B12 symptoms have got and so long as I continue to inject I'm pretty good. I never thought I'd improve again this much!

My pancreas has now packed up too so I suffer from a number of deficiency problems due to malabsorption and poor digestion, plus I have other weird and unpleasant health issues but if you get enough B12 and supporting supplements in time you should be OK! Good luck and take heart! X

[expatkerry in reply to deniseinmilden]

Hello there, I saw this thread had reopened and was surprised to see it was 5 years ago ! À lot of water under thé bridge since then, a year or so after posting I started self injecting. Today I have no breathlessness no weak legs, fewer bouts of depression and the aches and pains have gone. I still suffer from fatigué despite regular vit D injections but I doubt you can completely irradicate thé effets of PA. I thought a 'feel good' post was due😊

[deniseinmilden in reply to expatkerry]

It's great to hear from you and particularly that you too have improved in a similar way!Brilliant - thank you!

I wish you as well as possible and the patience to cope with your remaining limitations. x

[Seth12345 in reply to expatkerry]

How long did it take for you for the nighttime aches and pains to leave?

[expatkerry in reply to Seth12345]

Quite à while, it gradually disappeared. I'd say at it got better after 18 months of self injecting. I'm not à doctor but I présume it was the B12 that did it.

[hunny59]

I've given up trying to get any co-operation from my GP. They don't listen, disregard the guidelines and make you feel like it's all in your head. Mine even said he thought I was "barking up the wrong tree" a week ago. I wasn't willing to wait for the NHS wheels to grind as my health is too important to me so I'm now sorting myself out with guidance from the good folks here. No regrets.

[expatkerry]

Hi Hunny, I may well have to do the same, it makes me feel so frustrated waiting for appointments to come around, but my specialist is lovely and if I can make her do the right tests maybe I can get somewhere.