Hi Just wondering whether anyone can advise the best course of action for my 28 year old daughter please.
She was diagnosed as having ME when 15 and for many years before this used to complain about simply “not feeling very well”. Her main symptoms in the last 5 years are feeling cold, numb hands and feet, headaches, unsteady on her feet, her memory and concentration deteriorating and she sometimes also has a strange sensation of the skin on her arm or thigh feeling as though it is sunburnt.
Last year they thought she might have MS and she underwent a scan and a visual test which luckily was negative, then Myasthenia gravis was suspected and again this test was negative. She has also been tested for Coeliac Disease which I have and again negative, although a gluten free diet has improved her health.
Last year we asked the GP to test her vitB12 and it came back as 227, the GP started giving her injections, we asked if she could have these once a month due to the neurological issues she has and she has been having these.
My question is should the GP do further tests, we have been waiting to see if the results for MS and Myasthenia Gravis came back with anything and now we can rule these out just wondering whether she should have the tests for PA or are we better off just leaving well alone due to her receiving the injections?
Any guidance anyone can provide would be appreciated
Thanks
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tmoxon
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Sure someone will be along who can give you a much better answer at some point.
I'm not sure that it is really worth putting a lot of effort in to getting more tests done in relation to PA if your daughter is already receiving B12 injections - mainly because there are a lot of problems with the test that are done on the NHS in the UK and negative results aren't always correct.
However, having said that - the NICE guidelines are that if you have B12d with neurological effects then the correct treatment (in terms of loading shots) is one injection every other day until the symptoms stop improving and then maintenance shots every month/two months (think the guidelines say 2 months).
PA is an autoimmune condition and unfortunately the having one also means that you can have two or more - so makes life very complicated ... which would suggest that it would be wise not just to look at B12 Deficiency as the only possible source of problems and continue to look into other possibilities and rule them out.
Hope that you find answers and that things start to improve for your daughter.
Thank you Gambit62, my daughter does feel better with the injections and after going gluten free. After seeing how some people report on here and other sites that they don't get the injections from their GP despite having a lower result than her blood test I was worried that another GP may suggest her not having them.
Having said that, when her results came back from the neurologist to advise that she didn't have MS a GP from our surgery did contact us to say that they wanted to see her again to discuss where to go next, she hadn't had the test results for Myasthenia Gravis at the time so said she would wait for those.
Thank you for your links and help I will pass these on and she can decide where she wants to go from here
Unfortunately B12D and Pernicious Anaemia don't seem to be very well understood by a lot of GPs ... from personal experience I'd say that the pernicious of PA can be spot on - feels like a living death sometimes - zombie state, unable to think, and walking around like the bride of Frankenstein because my pins feel so unstead - but the Anaemia is the misnomer. Changes to red blood cells is a potential symptom, but a lot of GPs seem to think it is the classic indicator and has to be there ... went ballistic a couple of days ago at work (well as ballistic as I can go these days) because a colleague who is really suffering with multiple indicators was told by her GP that it couldn't be pernicious Anaemia because her red blood cells weren't showing any abnormality.
Came across a lovely ex GP on another site - who was very supportive and gave me back a little bit of hope by saying that as a GP he'd learnt a lot from his patients over the years so at least some GPs are open to learning. A few years ago my brother developed Diabetes - was assumed it was type 2 because he was in his mid-40s but reality is it was a late-onset Type1 (runs in the family and was identified as a sub-type probably about 10 years ago ... I was involved in the study but was told I hadn't got the gene) ... anyway, my brother was treated like a Type2 diabetic but wasn't responding to the treatments so, knowing from my mother that she was type1 he did a bit of research and found out that type1 actually responds to different drugs ... and his GP listened to him on that ... so there obviously are GPs that will listen ... he was put on a different set of drugs and his blood-sugar levels responded to the new set of drugs.
Hi again, just wanted to advise that your post further up is probably right, I spoke to another doctor yesterday who advised that a score of 227 for Vitamin B12 is very normal so I think at the moment it might be better to leave well alone in regards to further tests, as you say she is having the treatment.
I think we are lucky to have a gp who listened to our issues and gave the treatment, I don't thing the doctor I spoke to yesterday would have been so understanding. They also advised that a ferritin level was normal as long as above 15, i said that the was a huge differnce between 15 and the top level of 300.
Glad to hear that your brother ended up with the correct treatment
Its really sad that GPs are so hung up on figures from tests that have known flaws, and I think there is enough evidence now that you can be symptomatic at much higher levels than the ones taken as 'normal'.
Really glad that you have a GP that is listening and being helpful.
apologies for hijacking your thread but I noticed you said the results from the neurologist came back as not MS, and you had tests for Myasthenia Gravis.
I have recently seen a neurologist and he did no such tests - was this a private neurologist, or did you ask the NHS neurologist to do these tests?
apologies again, but am struggling with my GP and hte neurlogist he sent me to only asked me to lift my arms and stand up - we have asked for a second opinion ( i.e. to see another one) and would like to know what to do next time - if we have to ask for these tests, what is involved or if this is something a neurologist would do if we went privately.
I would welcome your help with this, as you have achieved what I have been struggling to for the last 9 months
Hi M So sorry to not reply sooner, just not had the opportunity.
Basically our daughter has always been very capable but this last year has been struggling with her degree and work, she definitely noticed a mental decline.
She has been complaining of not "feeling very well" for years and was diagnosed with ME and IBS at around 15. When i was diagnosed with CD 3 years ago I really did think she had the condition, our symptoms are very similar, headaches, feeling unbalanced, unable to concentrate etc. She was tested for CD and all negative.
As mentioned the neurological issues were our main concern and after reading about a neurologist called Dr Marios Hadjivassiliou based in Sheffield and the work he was doing in regard to gluten affecting people neurologically we asked our GPs if she could be referred, they said she could, however later on that GP left the practice and another contacted her advising that it would be better to see the neurologist at our local hospital, the reason they gave is that it would be better to have someone look at her who wasn't focussing on the gluten aspect, i don't know but i wondered whether it was a cost thing.
Anyway whilst waiting for her appointment she went for a sight test at Boots, they advised her that they were unable to improve the sight in one of her eyes and said that this wasn't normal and referred her an opthamologist.
She saw the neurologist who did the tests you describe during the appointment and also ordered a visual evoke test and an MRI scan, she had these and both confirmed that it wasn't MS. I am not sure whether it made any difference as the neurologist did not seem to focus on it but her grandfather was diagnosed with MS.
The test for Myasthenia gravis was done by the eye specialist as they thought that her eye issue was due to it getting tired, again this test was negative.
She is now on vitb12 injections given monthly and gf and does feel better
Sorry if this has gone on a bit just wanted to explain it as best as i could, hope its helpful to you, please dont hesitate to contact me if i can help any further
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