I believe my brother is dying from PA

[Wowo23]

Hi all,

My back story. I lost my right leg almost 5 years ago due to bone tumors. My primary as well as my oncologist, couldn't figure out why I kept losing weight(I was down to 80 pounds) and I couldn't figure out why I felt like I was losing my mind and why everything went black for a moment upon standing. After searching for over a year(tons of testing looking for more tumors) my oncologist thought to run a b12 panel. My b12 was practically non existent. My primary took over and ran the instric factor and MMTHFR tests. The instrinic factor which should be 0.0-0.1 was 98.00. The gene mutation came from each one of my parents. So, I was given a packet to give each one of my siblings. We are 2 boys and 2 girls. I have 2 older brothers and a younger sister. I started on loading doses and then they wanted to give 1 jab a month, but thankfully my oncologist said no way and for the last 4 years, I've been self jabbing 3 times a week. I've slowly gained back almost 40 pounds and feel so much better.

My oldest brother David, starting having little mini strokes about 5 years ago. He is now down to 120. My brother is over 6 ft tall, so I imagine he looks terrible. I say I imagine because he has turned into a recluse and won't let anyone come over. Thankfully he lives with his wife and my other brother so he's not alone. I had spoken with him many times on the phone asking him to get tested for PA. He said he did and was fine, but I also learned that he hasn't been to a doctor or left the house in over 2 years.

PA came to mind because of the same weightloss, neuro symptoms, dizziness upon standing, premature white hair, his agoraphobia, searching for words ect...

I've tried everything to get to see him, but he won't budge on visitors or going to the doctor. He says he knows he has some type of cancer, wants to be left alone and wants to let nature take it's course.

I just don't believe he has cancer. I feel that if he did, he would have passed a long time ago. Especially without treatment.

Knowing PA is a very slow death without treatment and knowing the signs and symptoms, I strongly feel b12 jabs would save his life. I've suggested that my sister in law fight for rights to make decisions for my brother's health, but she doesn't want to upset him and wants him to be in control of his own life or death decisions. My other brother feels the same, but for some reason, no one wants to go against him.

Thank you for reading.

Any insight or advice would be greatly appreciated.

[Nackapan]

That is very sad you can't reach out to your brother. Your only hope it seens is to Hope your other brother and sister in law will at least get him a blood test.

He sounds

very ill and controlling.

They may even be afraid of trying to help him as he may be mentally unstable with his illness.

Keep in contact or get a friend of yiyr poorly brother 'on board' ?

[Wowo23 in reply to Nackapan]

Thank you for your comment and support

[Sleepybunny]

Hi,

I am sorry to read about your brother. It must be very upsetting for you to know he is going through this.

I wondered if your family members might read a book about PA and B12 deficiency.

Two B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society) based in UK.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Perhaps they would watch a film about B12 deficiency?

Films about B12 deficiency

b12deficiency.info/films/

PAS conference 2019

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic in US

(article is aimed at researchers and health professionals)

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

"My oldest brother David, starting having little mini strokes"

I wondered if he had ever had his homocysteine levels checked.

B12 deficiency can be associated with higher homocysteine levels in some cases.

High homocysteine levels can be associated with a higher risk of strokes.

Link about homocysteine test

labtestsonline.org.uk/tests...

I am not medically trained.

[Wowo23 in reply to Sleepybunny]

Thank you so much for your reply. I've sent them the papers from the health dept. and explained about the gene mutation, but my brother is sure it's cancer and won't go to the doctor or let anyone over. I truly believe that if it were cancer, he would have passed a few years ago, but no one will listen to me😪

[Gen89]

Is it possible to ring your brother’s Gp and tell him you have PA with gene mutations from your parents and ask the Gp to contact your brother?

[Wowo23 in reply to Gen89]

I'll see if I can contact them. Thank you for your reply

[Gen89 in reply to Wowo23]

I hope things work out for you and your brother. So upsetting and hard to deal with a situation like yours. Good luck.

[Sleepybunny]

Have you talked to the PAS?

They can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

The person who runs B12 Deficiency Info has helped some forum members.

B12 Deficiency Info website

b12deficiency.info/

[Narwhal10]

Hi Wowo23,

I am so sorry to read about your own story and that of your brother. Thank goodness you got tested.

You say that your brother lives with his wife and other brother. So, maybe discussing with them your concerns if you have not already. Giving them information and possibly advocating on his behalf.

Now, your brother has had several mini strokes or transient ischaemic attacks (TIAs) which can cause personality changes and apathy. But also, PA/vitamin B12 deficiency can cause lethargy, changes in mood and because we have lots of different symptoms it is very challenging.

Sending my best wishes.

[Wowo23 in reply to Narwhal10]

Thank you

[Hidden in reply to Wowo23]

Hi wowo23.

I understand your dilemma, when I was first diagnosed I wrote to my brothers and sisters explaining that P.A. can run in the family. MY mother and gran were both crippled and bedridden. ALL ignored my advice, until my brother collapsed and taken to hospital (around 10 months after I was diagnosed ) He also had P.A., now 6 members of my maternal family have this condition.

All you can do is send them as much information (books as suggested by sleepybunny which are extremely informative)) and gently try to convince them.

I wish you all the best and hope you find some way in convincing then to get tested.