Worried about severity of PA

[Debbie]

Hi, I was diagnosed with PA about 6 years ago. For the first 3 years the monthly injections worked fine. A few years ago my health deteriorated, making it hard for me to walk without a walking stick.

About 18 months ago I started having weekly injections which helped a little, then in August I became even worse and now can only walk with a walking frame and only very short distances as my strength and muscle tone is nearly non existent. The eye sight in my right eye has also been affected.

About a month ago the doctor started me on injections every other day. I was wondering has anyone else been affected this way?

I'm starting to have some energy again, my strength has improved all be it slightly, but am worried that the damage has already been done and I may not be able to walk independently again. I live in Tasmania, Australia. Any feedback would be greatly appreciated.

[Hidden]

Hi Debbie,

No I've not been affected as badly as you, but I found after 5 years conventional B12 treatment I got thinner and weaker per year, started to sink trough my legs etc, I was found to also be folate def and the extra folate tablets perscribed helped me regain a lot of my muscle strenght back so wonder if you have had folate tested as its quite common with PAers to also become folate (and other B vits) deficient..

Alot of B vitamins need each other to be metabolised, if there is an imbalance (by only adding B12) recovery can be incompleet..Other vitamin def can also cause numerous problems so it may help to have a vitamin profile done. But I can not say that will be your problem,

I hope this helps,

Kind regards,

Marre.

[Debbie in reply to Hidden]

Hi Marre,

Thank you for your advice, I have started with a higher doseage of folate. I will look into taking additional B vitamins.

I am keeping a positive attitude and that with some time and a lot of the right vitamins my health will improve.

I hope all is well with you now.

Kindest regards,

Deb

[Hidden in reply to Hidden]

Hi Debbie,

I am fine now, am on once every 10 days cyano B12 with folate and its worked wonders for me, I'm just normal. But from the PAS forum I can see I am lucky, have no real problems with PA as long as I get enough B12 and folate. Others have far worse problems, but some get a lot of improvement with more frequent B12 and other vitamins as required, particularly folate . Others also seem to need vit D, magnesium, zink is important and copper def can look like PA etc so if possible try to further investigations..Thyroid conditions are also common with PA so thyroid function (and antibodies) should be tested if not doing well on standard treatment etc. Unfortunatly if you have an autoimune condition (PA) you can be more susseptable to more autoimune conditions (there are over 60 other autoimune conditions such as RA, Hypo/ hyper thyroid etc).

Some PAS members do a lot better with Methylcobalamin (infusions of a purer form of B12 with other vitamins added, and then topping up with subcutain injections daily),

Hope you will find a lot more improvement just with the extra injections and vitamins..

Kind regards,

Marre

[Debbie in reply to Hidden]

Hi again Marre,

It is great to read that you are well, over the last couple of days I have read alot of the story's from the PAS forum and I feel so bad for them, especially with the difficulty they have had gaining the extra B12 they so desparately need.

When I was originally diagnosed and started with the 6 weekly injections with my doctor I improved and was really well and living and functioning normal for over 3 years.

I'm self injecting the methylcobalamin every other day, and taking folate, magnesium, vitamin D, vitamin A, primrose oil, flaxseed oil and fish oil tablets, along with additional B vitamins, and importantly iron.

My original doctor was brilliant with suggesting I take the additional vitamins, however, slow to increase the amount of B12 I was having. My new doctor has been lovely, she knew I needed the extra B12 and found the self injecting B12 I could use, both doctors try if possible to use a naturopathic way of healing.

Yes like alot of us with PA I also have an underactive thyroid (this seems to be under control). My mother and grandmother have PA, although my mother didn't realise until I was diagnosed.

I was working full time in an office until my mobility was just to much for my employer to handle, I have found that any type of stress, emotional, work etc seemed to drain the B12 very quickly, also, being in the sun - heat has had negative affects.

I'd always been a very independent and physical person, now having to use a chair to get around is soul destroying.. Not to mention having to ask people for help constantly. My strength is starting to improve but am increasingly worried I may not be able to walk without aid again.

I only started the self injecting B12 six weeks ago, so I guess it really is early days yet.

Thank you for you advice, it is good to speak to someone who understands.

Hope you stay well.. Thank you

Kindest regards, Deb

[Hidden in reply to Hidden]

Hi Deb,

Yes it is terribly sad re :"the difficulty they have had gaining the extra B12 they so desparately need. ". My two Daughters have also been diagnosed with B12 def recently and are on conventional UK B12 treatment. They seem fine, most probably diagnosed on time and hopefully will never need more. I do, was diagnosed late and get my stuff abroad, its not expensive and I am very happy with my own arrangement, but do worry that one day I may need to help my kids..its just absurd that UK'ers are expected to last longer on the same B12 treatment than other fellow PA'ers abroad...most other EU countries give hydroxocobalamin as maintenance once every 2 months, why is a Britt suposed to last a month longer or otherwise put on antidepressants...its just to sad.

Now Canada is going to go on perscription for B12 (cyanocobalamin) it seems, sad for those people that rely on self medicating for quality of life..Buying over the counter is a lot cheaper I found.

Hope you will feel a lot more improvement in time, I've been on my routeen since 2006 and realy think I'm just normal now, had balance issues, but they are more or less gone now I think, hope you will find still further improvements over years,

Kind regards,

Marre.