From PA to CIPD - but a Big Thank You .. .

[Treesong2023]

Hellow lovely PA folks and mods/ forum leaders.

With the classic set of symptoms of peripheral neuropathy burning / tingling hands, feet, brain fog, carpel tunnel hand / arm aches, with endless tiredness and low mood thrown in for dessert. My own health detective work lead me here.

And here, I found the most tremendous amount of support, kindness and guidance. I learnt a lot from this forum, and from many of you with your replies. This raised my knowledge and understanding to a level that cleared my views. It also calmed the rising tide of fear and anxiety I had, had over my worsening symptoms.

Yesterday, I reviewed my extensive set of blood tests, nerve tests, and urine tests with a private endo. Who was lovely, and listened! Unlike my GP who seems to start from.. I don't believe you ...

Long story short, he felt that I was more likely to have an immunological problem such Rheumatoid Arthritis or CIPD. But maybe with some form immuno-gastritis causing a consistently low folate and close to abnormal RBC indicators. He is advising my GP to refer me to a Neurologist, given I have confirmed nerve damage in my feet and consistent / worsening set of neurological symptoms.

The nerve damage I have, I feel I have to lay at the feet of my GP. He suggested I need "talking therapies" instead of the nerve tests I had to push and push for.

Anyways, I will be pursuing my Endo's advice of course. But I wanted to pass that he said something that almost made me want to cry. He said " well done you for listening to your body, and trying to learn about what you are dealing with .."

I told him of Health Unlocked (he wasn't aware) saying it was packed full of people doing the same, and I benefitted from the help of the forums within it.

Now, that leads me sending my sincere and warm thanks to all who have helped me in the past weeks. Some in here have and are facing tremendously difficult times and trials. I can only marvel at their strength. But this place helps us all, and the people in it make it that way.

You are a great lot. A lovely bunch. You are good people.

I will be heading off to learn more about my "probable" condition on other forums, as us health detectives do! So, I am sending out my thanks, and wishing you all well ❤️. ..and let's never stop looking after our health, looking each other, and trying to get better! K🌻

[wedgewood]

Wishing you the very best in your search for better health . Thank you for your lovely message .Glad you have found this marvellous forum .

[Sleepybunny]

Hi,

Good luck in continuing to find answers.

"But maybe with some form immuno-gastritis "

AMAG (Autoimmune Metaplastic Atrophic Gastritis ) can be found in PA.

Might be worth asking the specialist if you could have AMAG.

AMAG is mentioned in link below.

pernicious-anaemia-society....

GUTS UK may be a useful site to look at

gutscharity.org.uk/

[Treesong2023 in reply to Sleepybunny]

❤️🌻

[Cherylclaire Forum Support]

...And there is now another more clued-up endocrinologist because he chose to listen to you, so making it easier for the next person to get support and an eventual diagnosis !

Yes, well done for listening to your body - and for summoning up the energy and courage required to push for the help you need.

Let us know how it goes, Treesong !

[Hidden]

That is great that you finally have a diagnosis. Had to look it up, can't believe you've been left with that for this long, well done for persisting. When you posted your blood test results the other day it was clear something else was going on. Really hope you get all the help and treatment you need. Bit angry for you as you've basically been treated as if you were mentally ill by the sounds of it and all along you had a serious condition causing you damage.

Thank God you finally got somewhere (you only get a listened to through paying private, seems to be the trend as thats what is being planned for us anyway). Wishing you all the very best in the future

[Treesong2023 in reply to Hidden]

Thanks Rachael - I am sure you will find you way ahead - i dont have a diagnosis. but a sharoper focus - and dont have B12D or PA as my first line problem it seems. CIDP was mentioned and I didnt know what it was either! Lets fight on girl. YNWA ... Sending best wishes.

[Sleepybunny in reply to Treesong2023]

Do you want me to post some links about CIPD?

Came across a few articles that suggested that B12 deficiency can be misdiagnosed as CIPD.

[Treesong2023 in reply to Sleepybunny]

Yes please 🐰🐇🐰🐇. 🌻

[Sleepybunny in reply to Treesong2023]

Just checking I have the right condition...

Did you mean CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)?

Apologies if I've got the wrong condition.

Links about CIDP

Some links may have details that could be upsetting.

CIDP Patient leaflet

thewaltoncentre.nhs.uk/pati...

UK hospital in link below is a centre of excellence for CIDP

kch.nhs.uk/service/a-z/peri...

UK link about polyneuropathy (aimed at health professionals)

patient.info/doctor/polyneu...

US link that mentions CIDP

rarediseases.org/rare-disea...

UK charity for CIDP and other neuropathies, lists sources of support

GAIN

gaincharity.org.uk/informat...

I found several nteresting articles when I searched online for

"B12 deficiency misdiagnosed as CIDP" and

"B12 deficiency CIDP"

I'm not medically trained and I am not saying you have been misdiagnosed. I'm just saying that CIDP is sometimes diagnosed when it's another problem causing the symptoms.

Good luck with getting the care and treatment you need.

[Treesong2023 in reply to Sleepybunny]

Yes Sleepy🐰. That's the one the main one my Endo suspects. But a general screen on immunological problems first.

Thank you for the links. As ever, I am touched by the help and time you give to the people who wander in here looking for advice. Really grateful. Thank you so much. Kim 🌻

[Motheroflittle]

So happy you finally got some answers and a path forward to better health Treesong.

All the best to you.

[Treesong2023 in reply to Motheroflittle]

Thank you 🌻 ..I seem to be ruling out things like PA and B12 etc. .. and getting close.