I started B12 injections in october 2022, continueing EOD since.
Just having another autoimmun disease diagnosed; primary biliary cholangitis!
When reading about PBC it becomes clear to me that you can have neurological symptoms from this disease as well! So my fatigue, autonomic symtoms, CNS symtoms like memory problems can actually being due to both diseases…. . I am getting more confused how to interprete and handle all my CNS disabilities, neurological spts, like spys from subacute combined degeneration of spinal cord which is my most disabeling spts that makes my unable to work since november 2022. I am loosing my hope of becoming better and being able to going back to work.
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Annaunge
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I know the feeling me too, but we must try to stay positive, any improvement is better than none
Like yourself I also have various autoimmune conditions to the point where I no longer know what is doing what. It is like being on a rudy roller coaster that you cant get off.
At present I am waiting a scan on my abdomen and to be seen in gastro but the long waits are very daunting.
Thank you! Exacly, I don t know which disease gives my spts…relieved you experience the same. It is hard as well when different doctors says my spts is due to the other disease…
When like us we present with complications I dont think they have a damned clue. My bits and pieces are scattered all over the place with different Drs / consultants all looking at the bit that interests them - none look at the whole picture or join the dots.
Can I ask you - do you get sharp pain on your right side high up under the rib cage ? It is worse with deep breaths or if I sneeze or cough.
I have a few isues such as gastritis and a couple of hernias hence why waiting to be seen in gastro - got an appointment for next month. I feel like I have won the jackpot I have been waiting to be seen well over a year!
I googled the symptoms and it mentioned the bile ducts ! I am waiting to be seen in Gastro and will get them to check. Did you notice any lumps on the right hand side of your abdomen ?
I shall be seeing the gastro on the14th of June and at present waiting an ultrasound.
can’t remember lumps, but grumbling and sharp pain.Gp first gave me a week of antibiotics which not surprising didn’t work. Bloods showed raised levels for jaundice etc ( ?ALPS, bilirubin I think), so got sent promptly to gastro.dept who did an ultrasound and saw blockage, that was removed next day. I had problems with removal ( but that is a different, rare, story) , year later had gallbladder removed too.
no, I don t have any pain actually, more neurologic spts, heat intolerence, faintings, burning sensations from waist down into my legs. Ataxia and memory issues.
Oh isn't life just great - I have all of that too ! ( Except the fainting )
The heat intolerance is dreadful, I have fans all around my home. My ataxia affects my gait, balance and walking but not my speach. The neurological symptoms get me down but since injecting are a little better but there is a wide margin for further improvement.
It is really amazing how spts are the same…..that relieves me….that I continue having hope in B12 injections! My spts are a bit netter after 7 months of injections. Lets hope for more approvements continueing injections! And not loosing hope when doctors addresses spts to other diseases where there is not a cure…
I am sorry to read of your plight but at the same time lovely that you and Jillly have so much in common. Proof positive you are not alone !
If you are injecting B12 every day ( as do I) I hope you are taking folic acid too as the B12 needs folic acid to work properly. An over the counter dose like 400ug is sufficient.
I am sure others will give you more detailed advice especially Sleepybunny when she awakes😂 but do keep a diary of symptoms, treatment and activity. This may help you look back and join the dots yourself as well as providing evidence of cause and effect and your triggers.
You have found this forum now so hopefully your journey will not be as lonely as there are lots of fellow travellers here!
Thank you! Yes, I am very glad having found this forum. It helps me incredibly much how to continue this Journey with autoimmune diseases. I do take supplements with injections. I am better but still unable to work and with a low functioning in my social life. Having to battle for treatement and still doctors referrs my spts to an other disease than the one that doc is handleing. Liver dr referrs to hematologist who referrs to neurologists etc. I am afraid of not beeing anle to work anymore, I feel that I am to young to stop working, I am 58. And I battle for having treatement for my B12 def, at least , that is one comdition that could improve with correct treatment. And I am hoping to have urso for my liver PBC, just waiting for results from biopsy. But it is a hard battle and uneven somehow. But I can t just accept my disabilities and that there is nothing to do about it! I want my b12 injections and cofactors…even though drs these days not believe in injections. In Sweden they want to treat everone with oral b12 as value in blood raises…..they don t understand that the spts must guide the treatement. I am figthing wind mills.
I echo many of your feelings as I too am going thorough the same although I am currently out of the early turbulent rapids and into calmer waters.
It’s hard when you don’t feel in control but you ARE in control. Only you know what you are experiencing so keep good records. This will help YOU guide and inform the medics when you get to see them and you will learn a lot about yourself. Keep it simple to start just recoding symptoms, treatment and activity.
My mind ran away with “what ifs” taking me to horrible places and I got very low. I now try to focus on what I have control of and learn more and more of how to help myself each day. It’s been a transformation to how I feel about the whole situation- still have bad days/moments but I have good days too now.
This is one of life’s curved balls and it isn’t easy. But together with all the help on this forum you will get through it to your new place. Getting to your new place is your current job so my advice is to approach your curved ball as if it was a work challenge. All the best and hugs 🤗🤗🤗
You manged to describe the situation in words. I am trying to find my new way to function, with disabilities. It is a hard way and as my difficulties doesn t show, lot s of people don t understand my struggles. I keep to a small amount of friends who understands and often have their own disabilities.
I try to read and learn a lot of my autoimmine diseases to become aware of which spts relates to which disease. And I keep a symptom diary, then I can give more distinct description at doctors appointment. It is a narrow way; if too many protocols and sypmtom scales they start to see me as a google- educated! And being to occupied with spts!
Don’t worry too much about what medics may think … the good ones welcome patients who ask questions IMHO! One medic was so delighted when I walked in with my PA folder - he went through it and extracted info to copy - he said how much time it had saved him and we covered a huge amount of ground in a short time
I find it interesting to see how a medic responds to “why do you think … “ or “can you explain why …?” It sorts the wheat from the chaff and if the medic is chaff I don’t waste my energy engaging with them but I get what I need from them - I have my objective clear before I go in and if they refuse - which has happened - I ask for a written detailed explanation of the refusal so I can understand their reasoning. To date this has never happened as they back off and agree to my request which is usually a referral or a reinstatement if treatment has been withdrawn.
You sound very together and I think you, like all of us, have down days when you need support and reassurance that you are on track. Keep on truckin’ my friend!
Hi, just noticed you have been diagnosed with PBC. I was diagnosed with Hashimoto thyroid over 25 years ago alongside low B12 (years later diagnosed with PA. I was told that I have PBC around 9 years ago and apart from an ultrasound I haven't received any form of treatment or follow up. Was just told have liver blood tests every 6 months. I recently had my tsh checked and it came back as 27!. I'm absolutely hanging, I can't even put one foot in front of the other. Off to the Drs soon but can't even think what I'm going to say? Just wanted to say hello. X
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