I write this report on behalf of my wife. She is 58yrs o...

Allergies, blood and immune system
1

I write this report on behalf of my wife. She is 58yrs old 5Ft 6in tall and weighed 10st 10lbs 2 years ago. These are details for the past two years.

Nov.03 - Carpal Tunnel symptoms show in Right Hand. Cannot grip a knife or fork properly, cannot squeeze toothpaste tube, etc!

July 04 – C.T. symptoms show in Left Hand. Back of R.H. becomes very swollen. Arms, elbows and shoulders, becoming very painful especially at night.

Doctor diagnoses Rheumatoid Arthritis.

Nov.04 – Nerve tests for C.T. show severe in R.H. and bad in L.H.

Feb.05 – Has a severe bout of Labrythitis (Viral). Three days in bed. Trouble getting balance, difficulty getting up and down from chair or out of bath. Loss of appetite.

Mar.05 – Carpal Tunnel operation on Right Hand. Biopsy of tissue was negative for Rheumatoid Arthritis. B12 deficiency was suggested!

Mar.05~ June 05 – Undertook gentle training routine to try and strengthen arm and leg muscles. Eventually able to get in and out of bath unaided.

Skin complaint, depigmentation showing on the back of R.H.

July 05 – Carpal Tunnel operation on L.H.

Aug.05 – Bakers cyst behind Right knee. Difficulty walking and moving knee.

Knees are becoming extremely painful and stiff, especially in the mornings or after any period of inactivity. Difficulty getting out of chair. Cannot rest for long in any one position before knees start to ache. Cannot get in or out of bath unaided.

Sept.05 – Extremely tired and depleted after any walk or exercise. Extreme difficulty climbing stairs. No strength, muscles look wasted and weight down by almost a stone since end of June (now 9st. 3lbs.).

Skin complaint has travelled up arm and over shoulder.(Looks like Vitiligo to me but has rough hard patches of skin not consistent with it)

Oct.13th 05 – Tests deficient for B12. 98ng/L(normal is 170~1100)

Tests deficient for iron. 4umo/L (normal is 11~25)

Told she has Pernicious Anaemia. Has course of 6 injections of B12 and will then get 1 injection every three months. Starts 4 week course of Ferrous Sulphate(iron tablets).

Nov.16th 05 – No improvement in energy levels. Still very slow and having trouble walking.

Dec.05 – Undergoing tests at Rheumatology.

Iron level has gone down. Now 2umo/l. Blood count down slightly as well, although told she is only mildly anaemic. Tests are ongoing.

From what I have read on B12 deficiency, it would appear to take between 2~5 years to deplete stores even in severe malabsorption.

B12 deficiency due to pernicious anaemia is an ‘autoimmune disease’ where antibodies attack your own system.

There are many reports on how B12 simulates various symptoms including R.A.

I wonder how much of the past year or maybe two years, has been due to a gradual deterioration of the bodies’ defences to cope with infection.

This message was automatically imported from the original Patient Experience

2

Dear Sir

I have just read your post and whilst 2 years have passed, I was hoping to hear that your wife's condition has improved and you have found the cause of her symptoms. I am 39 yrs old and was diagnosed with B12 deficiency in 2007, I had lots of tests including an endoscopy and they found I had a serious helicobacter infection and gastritis but not coeliacs disease (interestingly, in the past 3 months my 14 year old son was diagnosed with coeliacs). The gastroenterologist said that whilst I don't have coeliacs disease, perhaps it would be better if I went gluten free as it could be the cause of my b12 deficiency, ie poor absorption (my levels were the same as your wife's). I now eat a gluten free diet and it has helped immensely, I wonder if the doctors have checked your wife for coeliac disease? I had monthly injections of b12 by my GP for about 6 months and since changing to gluten free, I feel 1000% better and my b12 levels are now normal. What prompted me to investigate my symptoms was I felt soooo tired, I was falling asleep in front of my computer at work and while driving, so I knew something was wrong. I also suffer from vitiligo and whilst my first white patches appeared when I was 8 yrs old (only 3 small ones), no new spots had appeared until 2007 which is the same time my digestive troubles really peaked. b12 deficiency is a known symptom of coeliac disease and coeliacs is an autoimmune disorder. so if you have one autoimmune disorder this increases your risk of having another one several fold. I wished my vitiligo would lessen or stop but it doesn't seem to be so maybe this is my lot in life. I hope your wife is healthier and happier and would love to hear any news.

3

Hello,

I have just posted a reply to a reply of my own and have been reading some of the comments.

Your wifes symptons are similar to my husbands . He suffers very badly at the moment with walking and getting up steps. He is in a lot of pain and really can hardly walk. Although he is waiting to see a neurologist early June the Dr seems very indifferent to his hardly able to walk problem and says the appointment is routine! How is your wife doing now? I hope much better. He is severely depressed and confused on most days but does have good days too.

JD

4

Hello, Apologies for not having replied to above letters earlier.

Firstly, my wife is well and much improved.

Following my original letter when things looked very bleak towards the end of 2005 and my wife was diagnosed with Rheumatoid Arthritis, Linear Morphea, & Pernicious Anaemia. Her treatment was a cocktail of drugs:- Methotrexate 8*2.5mg, Plaquenil, Salazopyrin, Folic acid, Iron tablets and B12 injections. She was also taking Lodine for the pain.

She had three sessions of Methyl Pred Infusions (Steroid drip).

She had great difficulty in walking and tired easily. It was as if she had to learn to train her muscles to walk again. I put this down to nerve damage caused from the B12 deficiency. If nerve damage is not repaired then it’s possible she might not regain the use of her legs properly.

I started her on a light and well monitored training routine involving a recumbent cycle and an ergo rowing machine. If it hadn’t been for her willingness and determination to get better I might be writing a different letter.

Having always believed B12 was the initial cause of her problems, which also included Carpal tunnel & Labyrinthitis my aim was to try and reduce her dependency on the drugs. Her monthly blood tests were monitored by her Rheumatology assistant and her ‘ESR’ figures were dropping and stabilising.

Now she is only on Methotrexate(5 * 2.5mg) & Folic tablets. She still suffers occasionally from Labyrinthitis although fairly mild now. She does get stiff after sitting down following a walk but then, so do I. Her visits to the hospital are now once a year .

Having taken on the responsibility 3 years ago for a young rescue GSD, who gives us a good reason to go out walking every day, we can now enjoy up to 2 hour walks together.

I do hope this helps anyone who is suffering or has suffered, as my wife did 6 years ago.

GR