Newly diagnosed with PA but also have history of demyelination - is there a link?

[SB04]

I discovered your site a few weeks ago after recently being diagnosed with PA. I did not know about B12 deficiency, and after my GP diagnosed me in November she arranged for me to have a series of B12 shots. After reading ‘Could It Be B12?’ and ‘What You Need to now About Pernicious Aneamia & Vitamin B12 Deficiency,’ I was enlightened to say the least. Back in 2004 I developed severe neck pain, which then morphed into pins and needles as well as numbness that started in my right toe all the way to my right shoulder. I could not feel that side of my body and my GP at the time sent me straight to a neurologist where I had an MRI and a lesion was found in my C2 (cervical spine). I recovered after six weeks but then developed a few months later severe joint and neuropathic pain. The neuropathic pain with treatment eventually disappeared after 12 months but the joint pain was unbearable. My GP tested my iron levels and they were very low so was told to take FabIron and this did help with my energy levels but little impact on my joint pain. I was referred to an immunologist and had a gallium scan which showed inflammation throughout every joint in my body and was diagnosed with seronegative arthritis. Fast forward a few years and I developed another lesion in my thoracic spine, although my neuro at the time didn’t think it necessary to have a spinal MRI. Instead I had a brain MRI which came back normal and was therefore told I did not have MS. My GP in Melbourne was smart enough to order a Vitamin D test which should my levels to be extremely low so I have been supplementing for about five years and this has made a huge difference in terms of not getting any more colds. I also see a rheumatologist who has officially diagnosed me with demyelinating Sjogrens, however the only dry part of my body is my eyes. Fast forward to the last four years and I still have terrible joint pain as well as developed migraines (I never get headaches), severe nausea, tinnitus, visual disturbances (I sometimes feel permanently drunk), severe hip and lower back pain which I put down to my arthritis. I do need to mention here that four years ago my sister was diagnosed with MS and my brother with ulcerative colitis. I know, there has to be some genetic pre-disposition here but what I would give to find a cure – just about anything. Since my B12 shots many of my symptoms improve, it takes four days or so after the shot and then I feel great for about a week and then some symptoms return. You have to appreciate here that I can’t help asking myself if it’s all in my head. I would be grateful for any feedback from anyone who has had a similar experience and how many shots should I keep having? I have had three shots over a period of six weeks. My GP is very good and in comparison to my specialists is far more knowledgeable and open to suggestions. After all, she was the one who tested me for Vitamin D deficiency and diagnosed me with PA. Would you believe since my first lesion over 14 years ago, I was never tested for B12 deficiency by any of the specialists?

[Shash23]

Do u still feel neck pain?

[SB04 in reply to Shash23]

Yes - everyday. Currently see my chiro every two weeks for manipulation. Without it my neck would lock up.

[Shash23 in reply to SB04]

I had symptoms (neck pain etc.) 1½ years ago ..diagnose 6 mnth ago since treatment strt... I can feel the improvmnt.. Now i notice my neck pain at injection due time.

[SB04 in reply to Shash23]

Thanks for your response - that's good to know regarding relief from neck pain on injections. I may need to up my dosage from fortnightly to every other day and see how I go.

[wedgewood]

I’m sorry to hear that you have had such a bad time over so many years . The ignorance in the medical profession about B12 deficiency /Pernicious Anaemia , is nothing short of astounding and disgraceful .

When the UK wakes up , you will get responses from more competent members of PAS than me . But reading about your symptoms you should be getting an injection of B12 every other day until your symptoms stop improving . Then an injection as often as is needed to keep you well .

.. I had huge difficulty in getting a diagnosis , and now have to self-inject weekly . We are all different in how often we need an injection , but here in the UK , most patients are only allowed 1 injection every 3 months. B12 ampoules are only available on prescription here in the U.K. , so it means we have to buy them online from German pharmacies .

You will no doubt be given links by fellow members to certain information which you can pass on to your very competent sounding doctor .

I wish you all the best .

[SB04 in reply to wedgewood]

Thanks for your response. I currently live in Melbourne, Australia - and my GP is very open to any treatment that I need. I use to live in the UK and therefore can sympathise with anyone having to deal with the NHS. Here we can get a prescription for B12 - otherwise our local surgery can supply for around $5 per shot which is very reasonable.

[Martin_12 in reply to SB04]

In Australia hydroxocobalamin for injection is available at any pharmacy over the counter - no prescription required. Cost is typically AU$8 to 20 for 3 ampules. Cheapest is Neo B12 at Chemist Warehouse. A GP at a local bulk billing practice injects me as often as I feel necessary. If you want to self inject you can get syringes, needles etc from medshop.com.au/ or aimsmedical.com.au. I also buy blunt drawing up needles for ampoules which contain filters for preventing glass particles from being drawn into the syringe.

ncbi.nlm.nih.gov/pubmed/154...

When I get injections by the GP I ask him/her to use the filter needles to draw up the shot. Medshop has the filter needles.

[SB04 in reply to Martin_12]

Thanks for the information - it's good to know. Not sure I would try to inject myself - I'm a bit squeamish for that but at least I know where to source the ampules.

[clivealive Forum Support]

Hi SB04

It is important that your Folate level is monitored as this is essential to process the B12 you are having injected.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[SB04]

Thanks, Clivealiave. So would a B complex be sufficient to take in conjunction with the shots? Or would I need to supplement further with extra folate?