Confused Newbie

[JJ1314]

Morning Folks,

My story is somewhat involved, lengthy and a bit complicated but I'll keep it as brief as I can. I was diagnosed with B12 deficiency in July/August this year, sorry can't recall which, have received the usual loading dose of 6 injections and due my first 3 monthly injection in December.

My serum B12 was 135 so it seems fairly conclusive I'm b12 deficient, however, it's the other diagnoses I've acquired over the years which are confusing me; i.e do I have these diagnosed illnesses or has B12 deficiency been my problem all along. Any thoughts/opinions would be appreciated.

GP 1982 "Jaundice". Had visited GP because of constant fatigue. No hospital follow-up, no treatment or meds, no official diagnosis.

GP 1983 "Depression". Anti-depressants prescribed, follow up GP appts.

GP 1987 "M.E." 'Diagnosed' after many blood tests, all returning 'normal' results

Up until 1987 my main problems were mood swings and a crushing fatigue. After 1987, disgusted by the attitude of various GP's, I stayed away from doctors for several years. By the early/mid 90's a neurological element had emerged and the crushing fatigue was joined by pain in various muscles and joints. Neuro problems involved tingling/pins and needles in hands, feet, face and legs, balance and co-ordination issues, visual disturbances, confusion as in forgetting names of objects and, occasionally, people including family members.

1993 - 2001 Various diagnoses of PTSD, depression, anxiety, migraine

2001 Saw new GP at surgery and was referred for MRI scan and lumbar puncture. Scan revealed brain lesions but lumbar puncture was 'normal'. GP was adamant I had MS, neuro said results were "inconclusive". This debate between GP and Neuro continued for about 12 months.

2002. Sitting at home, I lost feeling in my legs and couldn't move them. Fingers in both hands curled towards palms so that hands were like claws and I couldn't straighten fingers. After an hour or so sensation gradually returned to legs and I couldn't straighten my fingers. Back to doc and she did more blood tests.

Tests revealed very low calcium, vit d and potassium. Was immediately started on meds, saw a number of Endocrinologists who all tried and failed to discover the cause of my low calcium, vit D and potassium, was eventually put down to malabsorption of unknown cause.

2002 Diagnosed with Type 2 diabetes not lifestyle related, i.e. not obese or bad diet etc.

2017 B12 deficiency.

That is my story. Since the B12 diagnosis I have tried to discuss the earlier diagnoses with my current doc. I have been taking a PPI, Metformin and a Statin for a number of years now but all of my symptoms were pre-existing before I was prescribed those drugs. By discussing my history with my doc I was hoping to get a clearer picture of what's actually wrong with me.

None of the meds prescribed for the earlier diagnoses really helped. Since the B12 diagnosis I have been using B12 patches and a spray to supplement the injections. Many of the symptoms attributed to my other illnesses have improved since I started taking additional B12.

I'm not saying all of my previous diagnoses were actually down to the B12 deficiency but I believe some of them are. Unfortunately my doc won't really discuss the matter. Nor will he accept that I remained symptomatic during and after receiving the loading dose and that I probably require injections more frequently than every 3 months.

After all the tests over the years, all I know for sure is that I have lesions on my brain, calcium, Vit D and Potassium levels remain volatile despite meds and my B12 is low. The type 2 Diabetes is well controlled and not posing any problems

Every day is a fog day for me so apologies for the rambling nature of this post. I have tried to keep it as brief and succinct as I can. Any thoughts and opinions would be appreciated. Thanks in advance

[JJ1314]

Hi Eaoz, thanks for your reply. I've had the chat with the GP re the injection every other day until no further improvement then every two months. It didn't go well. He essentially rejected my points on the basis that pins and needles, tingling, dizziness, balance problems etc were rather trivial neurological symptoms.

I suggested he visit the PAS website, read Martyn Hooper's books and I left the surgery.

I'm currently awaiting delivery of Hydroxocobalamin ampoules from Germany. I already have syringes and needles.

I hadn't heard of LADA, I'll read up on it. Many thanks for the info.

[Polaris]

It must have been so difficuit and frustrating coping over the years with what seems to have been related autoimmune diseases JJ. You probably know that researchers now believe they stem from 'leaky gut/atrophic gastritis', leading to lack of absorption of vital B12 as well as other nutrients. It would seem vital that your neurological symptoms should be treated without delay - as per BNF, BCSH, as well as BMJ latest research document - 'every other day until no further improvement', especially as Metformin and PPIs would have also depleted B12.

I'm wondering about your description of fingers curled towards palms and found this intriguing as little finger on my left hand also does this resulting in a claw.... On looking it up, I found it is Dupuytren's contracture or Vikings Disease, more common in those of Northern European ancestry. This makes complete sense as my Irish grandmother and most of her descendants were red haired ! Other research I'd read in the past also mentioned PA was more common in blue eyed Northern Europeans.....My sister (PA &a Hashimoto's) is auburn with blue eyes and there are five of us in the family with various autoimmune diseases.

I have Hashimoto's as well as B12def, and have been self injecting every other day for over seven months with ever improving results.

This is what I copied from research I found - I can't find the original link:

...........

"An increased risk of Dupuytren’s contracture was found, especially for female carriers. There is strong evidence of genetic susceptibility to Dupuytren’s contracture (19). However, only 1 locus has been reported (OMIM no. 126900), and studies of acquired chromo- somal abnormalities in contracture nodules did not reveal evidence of a clustering breakpoint of likely etiologic relevance (20). Among carriers developing Dupuytren’s contracture in our cohort, we found 2 related female carriers, both with an inv(5)(p13q15), and 2 unrelated carriers with a breakpoint involving 11q25. Thus, we suggest the presence of candidate loci for Dupuytren’s contracture on chromosomes 5 and 11. In addition, we found an increased risk of pernicious anemia, but this was based on 3 carriers with rearrangements involving different chromosomes that have not previously been suggested to be associated with pernicious anemia (OMIM no. 261100)".

Meyer et al reported that 5 of 85 patients with ALS carried a CSC An increased risk of Dupuytren’s contracture was found, especially for female carriers. There is strong evidence of genetic susceptibility to Dupuytren’s contracture (19). However, only 1 locus has been reported (OMIM no. 126900), and studies of acquired chromo- somal abnormalities in contracture nodules did not reveal evidence of a clustering breakpoint of likely etiologic relevance (20). Among carriers developing Dupuytren’s contracture in our cohort, we found 2 related female carriers, both with an inv(5)(p13q15), and 2 unrelated carriers with a breakpoint involving 11q25. Thus, we suggest the presence of candidate loci for Dupuytren’s contracture on chromosomes 5 and 11. In addition, we found an increased risk of pernicious anemia, but this was based on 3 carriers with rearrangements involving different chromosomes that have not previously been suggested to be associated with pernicious anemia (OMIM no. 261100)".

Meyer et al reported that 5 of 85 patients with ALS carried a CSC"

......................

Other research also links Vikings Disease to Diabetes.

[JJ1314]

Thanks for the info and apologies for the delay in replying. Have been feeling a bit rotten the last few days. My doc at the time of the finger curling episode said it was the “classic symptom” of calcium deficiency. I took her at her word and have never looked into that further, primarily because I was particularly fed up with docs, tests, illness etc at the time.

On a completely different topic. I’ve had dogs most of my life and we currently have three Cockers, one of whom was ill last week. Off to the vet she went, was diagnosed, treated and is now back to full health.

It suddenly struck me that in all the years our dogs have gone to the vet, the vet has never been wrong in a diagnosis. The vet listens to the owner, examines the patient, makes the diagnosis (with tests done if required), gives the relevant treatment and the end result is a fully healthy animal again.

I compared the medical treatment our dogs have received over the years and realised it was far superior to that offered to me by various GP’s and hospital consultants.

From now on I’m going to the vet. With a bit of luck I’ll end up as fit as our dogs.

[Polaris in reply to JJ1314]

So sorry, I've only just seen your reply. Do hope you're feeling better JJ. Agree wholeheartedly about vets - it's been said on the forum many times that it's much easier for animals to get their B12 injections! Vets and veterinary nurses are allowed to treat humans I believe but doctors aren't allowed to treat animals.....

I'm pretty sure my finger is Vikings - although fairly rare, a nurse friend had heard of it and confirmed. I suppose it could also be caused by calcium deficiency - fairly likely that, if not absorbing B12, not absorbing other vital nutrients either......