Saw neurologist today - he was awful ... - Pernicious Anaemi...

Pernicious Anaemia Society

24,000 members16,857 posts

Saw neurologist today - he was awful - stole any hope I had, please help


I saw the neurologist today and he was awful.

I had seen the opthamologist at the local hospital yesterday and he confirmed there were abnomalities with my optic nerves, he aslo said that there was definately something wrong with me (looking at me, my skin, my shaking) and said he thought all the neurological issues were related and that I needed to see a neurologist. I explained I had a neurologist appointment the next day but did not know the name of the neurologist. He called the other hospital to find out who I was seeing,saying this needed to be dealt with right away - got the name, chap unavailable and so he went off and spoke to the neurologist at the hospital we were at and agreed that that neurologist would speak to the one I was seeing today. I had hope.... finally someone listening to me and taking this seriously.

I got there - he had no idea who I was or why I was there, and showed little interest or care

he asked me what I wanted - I said I wanted him to tell me what was wrong with me and tell me how he was going to fix me.

he asked what tests I thought he would run, I replied with I want a homocycteine test and a transcobalamine test and if possible intracellular B12.

he said no.

I explained that I had been advised htat perhaps I was not getting better on the B12 shots because I was not converting the B12 and these tests would show how much B12 I was converting and absorbong.

He said that was nonesense, that my blood serum was in an acceptable level, and that because I was having intramuscular B12 shots there could be no issues with conversion and he would not do any blood tests.

he did the basic neurological tests (sharp stick to foot, hammer to joints) and tried to get me to hold my arms out in front of me.

As I tried, I warned him I could not do this due to the pain in my back and the weakness in my arms, and true to form it was agony so I stopped - he got cross and badgered me to do it again and again - I was crying and in so much pain but all he said was that if I was not going to do that test he could not help me. and sat back down

I stood my ground and told him that although I could not do that one test he could try others, and had to beg him in the end - that is when he did the foot scrape and the hammer to the joints.

he looked in my eyes, told me not to shake (unbelieveable- that was why I was there!) and grabbed my head - which caused me absolute agony. Had he read my notes or warned me that he was goign to grab my head, the notes or I could have told him that I cannot bear any pressure or touch to my head or neck. That is why All my hair was cut off ( had lovely long red hair) - because I cannot wash or brush it any more ( I was devastated when that was done)

He asked me if I was stressed - I said I was in pain every day , all day and night.

He decided that he did not know what was wrong with me, would not do any tests, but thought it was functional neurological disorder. I asked him what that was - he said I could look it up online, that it was something that happened to people who were stressed.

Then the nurse came in and handed him my notes - he flicked through and redid the eye test - this time promising not to touch my head, and said he would do an MRI, but not for what or why, or when.

He told me I would get a letter and that I could go home now

and that was it.

I was crying all the way home, and looked up FND ( Functional neurological disorder) and it is just a catch-all name for neurological symptoms they cannot identify ( no surprise as they will not do the *** tests!)

I am so upset.

All my hope is gone.

I do not know what to do now.

Is there somewhere where I could have the homocysteine and transcobalamine tested privately?

I looked online but although I found a couple of places they say I need a doctors note, and withthe experience I have had so far I would really welcome a reccomendation from someone who knows the company are good, and do not need a doctors note as mine is a stupid fool who refuses to do any tests and left me 3 years with low B12, knowing it was low, without treatment, and now refuses to do any tests to cover the fact he did not treat me in the first place.

I am at the end of my tether.

I cannot brush my own teeth, have shower without passing out from the pain, hold a cup of tea without spilling half over me from the shakes, remember what I am doing most of the time, have a converation withoug forgetting half the words and not being able to say the others properly.

I cannot hug my own children due to the pain, I cannot cook their food, wash their clothes, drive them to parties - I am utterly pointless, rotting in my own flesh and no one is doing anything to help.They just treat me like an inconvienience to be shood away with more pills and told I am depressed / stressed. This would be making me stressed, but I am so sad, so tired and I am, as the song says, "sick and tired of being sick and tired"


2 Replies

I am very sorry to hear your ordeal Mrs Somerset. :(

I keep saying, doctors are no longer interested in fixing patients but only if they could pump poisons like chemo which is more profitable to pharma industry. I don't know where you are but St Thomas' ( does active B12, MMA and Homocysteine tests privately though you need a referral letter from your GP. Failing that you could go to a private walk-in GP (medicaldiagnosticlaboratory... £100 for B12+Folate+FBC etc and £78 for Homeocystein). Or else, you can also have online blood test as well.

I know other private GP that I can recommend but they are in London so I don't know if that's any good. When I went there recently, it was very good, the doctor listened to me carefully, considerate and caring, completely opposite of NHS which treats you like a paranoid mentally ill patient! The price was very reasonable compared to other private hospitals too.

There are other online blood tests which you can choose and I'm sure others will tell you.

Mrs_Somerset in reply to Erainy

Hi Erainy,

Thank-you for your reply. I have passed the info onto my husband. He is also calling an organisation called Spire - they have a hospital near to me - he is keen to book the tests even if they need to be done privately.

Thank-you for your help.


You may also like...