Seeing a Private Haematologist

[Galadriel1]

Hi having failed to get anywhere with GP referred Haematologist, whom they referred me to twice and she did not even bother to phone and talk to me let alone see me to discuss my symptoms, I have now obtained a private referral to both a haematologist and orthopaedics (because I asked for an MRI of my spine) .  Saw haematologist last night and he seems very knowledgeable about PA but he stated that none of his patients require more frequent treatment than every 4 weeks......  I was a bit shocked by that, given the amounts people give themselves on the forum!  He seems to think I have other things going on and said that not all of my symptoms were B12 related although they are all quoted on PAS site, I did not argue, I just want to move forward.  He is going to do the other tests including Homocysteine and MMA (I think) and he wants to do a brain scan and look for other deficiencies, so happy for him to do that.  He did say he thinks I do need the B12 but that is not the only problem I have.  I have to make myself go 2 weeks without any B12 so he can do tests and see what is happening at cell level so that is good (I think).  He is using NHS services for as much as possible (I have limited funds)  including the brain MRI.  I am 4 weeks into treatment for Vit D deficiency and there is a marked improvement in my levels of fatigue and also been taking a multivit to help the B12 but think I am not getting enough folate and perhaps other vits. so hopefully he will sort all that out.  I will keep forum posted as any info on decent Dr's is a good thing, and although I am a bit wary of the thought of a reduction in B12, he seems very thorough and clued up so willing to go with it. 

[fbirder]

At least he is willing to investigate. My 'haematologist' was completely dismissive.

I would try negotiating to see if you could get more frequent jabs. I managed to persuade my GP to prescribe B12 for me to inject at home every fortnight (although that's still not enough). There were two things that seemed to work - I gave him a copy of Martyn Hooper's book and I kept a record of my fatigue levels vs my B12 injections. The graph from the latter - frankhollis.com/temp/Fatigu... - was quite convincing.

[Galadriel1 in reply to fbirder]

He seems to know about PA but how up to date that knowledge is......  I feel he does want to test and he has compromised with asking me to only stop B12 for 2 weeks rather than what he thinks is the minimum of 4 weeks as I told him last time after 12 loading doses I only lasted a week.  I am bad at keeping record of my symptoms but will try and also try to find latest research to take to him.

[jillc39]

I found your message so interesting - I rang 7 secretaries of haemotologist (sp) before I found one who was interested in PA  and he wants more tests (which my gp says the NHS wont pay for).  I get in the same muddle when you read on this site how often others self inject - whilst my gp will not give me another b12 after a fortnight because 'it is not allowed' even though I am in pain with neurological symptoms. Why do you think it is that very few of us can cope with a delay in B12 when we have so many symptoms which return after a couple of weeks. do let ;us know what happens......

[Galadriel1 in reply to jillc39]

Hi jillc39 I will let you all know as even having him listen and be willing to do all these tests is better than most on here seem to be getting. 

[Galadriel1]

Hi All I am sorry I have taken so long to update the group. The constant fight is exhausting! Haematologist came back and said that my MRI was fine, no issues and said -

"test of B12 status has shown a normal urine MMA/creatinine ratio and a normal serum homocysteine level consistent with a normal tissue B12 level." He went on to say - "there is no justification on the basis of these blood tests to administer B12 injections more frequently than at 2 weekly intervals."

He goes on to state that he believes the bleeding gums is down to my extremely low Vit. C. 4 (25-?) and recommends ascorbic acid for 6 weeks and then a lower maintenance dose of 50mg daily.

He then totally dismisses all the usual symptoms of B12 saying -

" With regards to her ongoing symptoms of memory loss, forgetfulness, foggy headed-ness and extreme lethargy, I went on to reassure Mrs ??? that I doubt these symptoms ca be attributed to B!12 deficiency."

He then ends with saying that as my symptoms are troubling me to "..such a degree, I think she would benefit from a referral to a Neurologist."

Verbally to me he thought Dr should refer me to a memory clinic and told me Dr should have given me ongoing maintenance dose of D3 as per the guidelines, but did not mention any of this in letter to Dr.

The letter resulted in Dr's refusing to give me anymore that 1 injection every 2 weeks despite me saying I should be having every other day until no further improvement and I still have serious neurological issues but they are now totally dismissing that on the basis of the above statement from the haematologist. Have an appointment to discuss the reults.... just don't know what to say to convince Dr. I need more frequent injections as I stopped the every other day very prematurely due to fear of Dr stopping them altogether after being told by nurse if I didn't agree to a re-test of B12 serum,treatment would be withdrawn, (explained in another post).

Help! Sooo fed up!