Hi PAS friends. Please help with my diagnosis

[Chloebaby]

I think I may have functional neurological disorder and possibly PA. I have a massive number of serious physical, neuro, and mental health symptoms over many years.

Via path results:

Serum b12 304ng/l. Range 187-883

Active b12 51 pmol/l. Range 25-75 indeterminate, 76-108 normal

MMA 304. Range 0-280. I have no obvious renal or liver problems

Haematologist and biochemist (via my neurologist) say shape of my blood cells is normal and other levels normal so not anaemia and they have seen much higher MMA readings. Neurologist suggests I buy oral b12 as a placebo.

I have an autoimmune disorder, as does mum and sister. My brother has PA and gets injections of b12.

Tested for PA which says I don’t have it

There are many possible causative factors-

Autoimmune link and brother with PA

Very long term poor nutritional intake

Gastric bypass 2009

On PPI’s for more than 2 years following perforated stomach ulcer

Continuous cycle of low b12, folate and iron deficiency. When one treated the next one appears

BOMSS advise 3 monthly b12 injections for life following gastric bypass. I am not receiving this.

Other possible causative/contributory factors but can’t recall them all at moment.

I have many allergies and food intolerances, and certain foods I avoid because I don’t like the taste or texture and if I eat them I feel nauseous or vomit.

The hospital have carried out tests which show I am allergic to vitamin b12 so I can’t take oral supplements, and MMA being raised may suggest that my b12 is low at a cellular level.

GP completely refuses treatment and has refused help from PAS.

Can you please give your thoughts on possible diagnosis and way forward

THANK YOU -FIRST POST SO PLEASE BE GENTLE.

[fbirder]

Gastric bypass surgery means that you're almost certainly not absorbing enough B12 from food (or oral supplements). You should be on B12 injections as well as folate an iron supplements. The iron should be an easily absorbable form of iron (fumarate or bisglycinate) not sulfate.

Write to the GP saying that you want to go on a trial of B12 injections. Include a copy of the BOMSS guidelines. Send a copy to the head of the practice.

Get a good multi-vitamin and mineral from the local supermarket and buy some iron bisglycinate (25 mg) from Amazon.

[Chloebaby in reply to fbirder]

Hi

Thank you so much for your reply. GP has completely refused to discuss it with me any further and refuses contact from PAS. Gastric bypass was done in private sector in 2009 so GP says I have to go private for any help. I explained guidelines following a bypass have changed since then plus deficiency could be caused by other reasons.

GP refused to arrange a trial of injections. I said a trial of vitamin b12 cannot be done privately because I’ve been diagnosed by hospital with cobalt (b12) allergy and trial needs done where they have emergency facilities in case allergy causes anaphylactic shock.

I’m also allergic to iron so need infusions in hospital so I’m monitored. Only sent for infusion once my iron is low and not in a preventative way.

I can’t take general multivitamins as allergic to some of the other contents in addition to b12 and iron.

I made formal complaint to surgery manager but their response ignored the issue. GP told me I was being unfair to complain about him.

I have an eating disorder and the dietician (who is part of weight management team and the separate bariatric team) wrote to my GP listing all the blood tests I should have annually and included a copy of their guidelines showing need for b12 injections 3 monthly. GP’s response was to say he’d been told by haematology that ‘dieticians say a lot of things’ so no need to act on it. GP says haematology have twice refused to take me on as a patient as serum b12 is normal.

I had autoimmune disease from around 2003; MMP. Layers of skin would come off my gums leaving them raw so caused limited diet and extremely painful to brush teeth leading to gingivitis and wobbly teeth and inability to bite or chew food. Eventually all teeth removed and can’t chew with dentures so diet remains poor.

Any further suggestions re diagnosis and how to move situation forward would be grateful from you and all readers.

I’ve been a member of PAS for about 18 months and have learned so much from yourself and all the comments. It’s good to know I’m not the only person finding difficulty with diagnosis and treatment. Although I’m not definite if I have PAS or not I find this website friendly with a lot of clear information.

I’m sad that I continue to get new symptoms and diagnoses on a regular basis but I feel it would be too dangerous to self inject given the b12 allergy.

[JMN2017 in reply to Chloebaby]

Could you go privately to get a B12 injection under medical supervision? Then, if not allergic to that injection, you could go ahead and self-inject?

[Chloebaby in reply to JMN2017]

Hi

Thanks so much for your reply. I have an allergy to iron so have to get infusions in hospital as a day patient for monitoring. Last time the doctor refused to go ahead with it as previously I had a serious reaction during the infusion and he was very concerned that they would not be able to deal with me safely if I went into full anaphylactic shock given my previous response. After consultations with consultants he went ahead 4 months later.

When I was diagnosed by the hospital with cobalt/b12 allergy they indicated I was highly allergic to it and listed other things I was allergic to but at a less serious level.

I’m concerned about going to a private facility who generally have less emergency equipment than nhs wards, especially given how concerned the last hospital dr was about safely responding to my iron allergy symptoms. I’m concerned that it might be really unsafe, especially given the long list of health conditions I’m also dealing with.

I must admit I’ve been very tempted.

[JMN2017 in reply to Chloebaby]

HI Chloebaby

I'm so sorry to read of you having so many allergies and I can appreciate the concern it will be to both you and any doctor administering anything that might trigger a reaction. Certainly, anaphaltic shock is a serios situation and I agree you would need full emergency back up on hand, ie in a hospital environment.

However, many / most private consultants will also work for the NHS and, in situations where they want full emergency/ITU back up on hand for operations/procedures, they will do these within NHS hospitals, as a private patient.

If you were to discuss your potential to anaphalaxis and the possibility of being treated within an NHS hospital but as a private patient, you may well be able to find a private consultant who would do that for you. If you are B12 deficient, I would have thought it was important to get B12 into you.

If you're not allergic to the first injection, I would have thought you would be OK with subsquent injections. With self-injecting subsequent B12, you could maybe sit, with a friend/relative, in the car right outside Emergency Dept so, if anything untoward happened, your friend could run into Emergency and alert them

I have to say, that's what I was going to do for my first injection but, managed to persuade a very able friend to be with me while I did it. Fortunately, I was fine but appreciate I don't have the issues you do

Maybe someone else has some ideas ...???

There has to be a way ..... Take care and wishing you all the best

[Chloebaby in reply to JMN2017]

Thanks for your thoughtful response. That’s a good idea about private consultant seeing me in nhs facility.

[Choox]

Change your GP?

[JMN2017 in reply to Choox]

Problem with that, Choox , is that one could be jumping from the frying pan into the fire. One never knows if the 'new' GP thinks any differently, unless you can discuss it with them before changing

[Chloebaby in reply to Choox]

Thanks for your thoughts on this.