Off to see a neurologist…

[sirlam]

Hi. My GP has referred me to the neurologist. I think to reassure herself that my symptoms are compatible with my PA diagnosis. I can’t get too excited as it seems from reading here that the neuro may only have a basic knowledge of PA. But I may be lucky! How to best use this opportunity? What should I ask? Are there tests I should try to get? What can a neuro add to my care?!! Ideas please! Thank you so much. PS I have been SI for about a month now, alternate days as per BNF guidelines. My only ‘unusual’ symptom is that my bladder does not now let me know when it is full!

[Sallybones]

Hi sirlam, I'm seeing my neurologist tomorrow. Seen him before but that was before I knew much about B12 deficiency. I've sent him a copy of letter I did to my GP with list of symptoms using the PAS tick list and new guidelines. My GP admits she doesn't know much about B12 but is adamant 'they don't do them at her surgery and they're only for tiredness'! Well I'm tired all right. I asked for referral to Haematology but she has since referred me to Endocrinology but there are no appointments available there at the moment!! I too think this is for reassurance for herself but also hoping someone else will foot the bill. Whatever! I will push any consultant I see for treatment.

I will post the outcome of my appointment but not building my hopes up just in case. BTW a great deal of my symptoms are neurological but I have a page load of others and nothing I have been offered in the past has helped or been tolerated by me.

[sirlam in reply to Sallybones]

Thank you and I do hope your neuro visit was useful!

[Sleepybunny]

I take a copy of the "BCSH Cobalamin and Folate guidelines" with me when I have appts.

In future I'm also going to take a copy of Fbirder's summary of B12 documents. Search for Fbirder's posts to find a link to summary.

If you are self treating then some tests might be affected by this....

b12deficiency.info/b12-test...

active-b12.com/frequently-a... see 4th question

One test I never had but would have liked is a "blood smear" aka blood film. b12 deficiency (and folate deficiency) can lead to macrocytosis. Iron deficiency can lead to microcytosis. A blood smear may show both microcytic and macrocytic cells in someone who has both conditions.

patient.info/doctor/macrocy...

patient.info/doctor/periphe...

labtestsonline.org.uk/under...

[sirlam in reply to Sleepybunny]

Thank you! I shall take all that

[Ithinkimdying]

Hey Sirlam if you have been diagnosed with PA have you not have a b12/folate serum test? And MMA and homocyestine also confirm low b12. I have yet to have the IF intrinsic test done. I've read it is only 30% or so accurate. I do have a few factors that could tie into me having PA like i do also have ongoing gastritis which i was diagnosed with 2 years ago. Do you have anything GI issues? My GP diagnosised me with b12 anemia and "involuntary muscle movements" (which i would think is from b12). But let me know how it goes my neuro that did find my b12 is a croc so i now do everything for myself medicine wise.

[Sallybones]

Hi Sirlam

my neurologist nice man that he is also has little knowledge of B12 deficiency but I explained I had to see him again to satisfy my GP and move me on again to another step. He said he is satisfied i do not have a neurological disease, which is ok by me, but doesn't dismiss the neuro symptoms. I've had brain scan and lumbar puncture in the past and they were clear. I said I had asked to be referred to a Haematologist, which he also thought was the way to go. So in his reply to my GP I asked if he would recommend that she would follow the B12 / Haematologist route, which he agreed to do. So all not lost, just another summer / year going by. He is quite empathetic for me. Meanwhile I have got a referral to see an Endocrinologist in June.

So sorry not much positive for you re neurologist but they are all different and you never know.

[sweetnessandlight]

I saw a neurologist on 23rd March. He accepted that I have neurological symptoms but didn't believe that they are b12 related because I have 3 monthly injections. He was very patronising about it really but I didn't argue with him because I wanted to rule out other causes and I had been self injecting every other day for a month by that time, so I was already getting the self treatment they should have been giving me. He ordered a nerve conduction test and a brain and whole spine MRI. He also suggested gaberpentin for the pain. I am now awaiting results. I felt fairly satisfied because I will just carry on self injecting anyway. Despite the guidelines I think you will be really lucky if you get anywhere on increasing b12 but I wish you all the luck in the world.

[sirlam]

Thank you for your replies! Lots for me to think about. I will let you know what happens!

[sirlam]

Saw the neurologist and was initially pleased - he seemed to be knowledgeable about PA. He checked all my reflexes, prodded me with a sharp object and a tuning fork etc. Confirmed I have carpal tunnel. Listened to me talking about my bladder worries and agreed to refer for a neck scan to check the myelin damage in the cord. Then blew it by saying I should have another blood test and stop my injecting for 6 weeks first. Why? What could that possibly tell us? Am I missing something? Thank you!