Neuro doctors

Tried to explain to the Neuro doctor about my sided weakness and head pain. He said I only have a migraine, and should go on migraine meds, explained tried them and it did not work but blood thinners do ease the pain, he just said I was making it up ?? Where do yhey get these doctors from?? He got rather angry with me and said blood thinners don't ease pain that was rubbish, also said I am losing badder control too he just told me to go away and lose weight, I have been losing weight at the rate of knots so don't think its anything to do with weights as its getting worse by the day.

Going blood clinic next week lets see if I get more sense out of them :-)

18 Replies

  • There does seem to be a diabolical lack of joined up thinking with some neurologists, which is mystifying - personally I fail to understand how they can't understand inflammation and sticky blood and that it might affect the brain.. how rude and unkind. I sometimes wonder if we should all have a drive to write to the various organizations attached to neurologists and their associated umbrella organizations - simply as there seem to be so ,many people reporting these awful attitudes! Mary F x

  • I echo what you're saying Mary. Last week I saw a Neuro who told me that there was nothing "organically" wrong with me. But when I asked him how I went about stopping my anticoagulant he muttered that I was "an obstructive patient". Needless to say I'm still taking the anticoagulant and am in the middle of changing to a different Neuro!!!!!

  • I think your right Mary, I think sometimes my hospital appointments are a waste of time for me, this chap really should read notes before asking me questions, I took a friend with this time she works with me and backed up what I was saying about poor memory and needing the loo more, she has seen when I have had sharp pain in my head and lost sight in my eye, said how it looked from her said not just my said. She said about slurred words and lack of balance while working. We both come away feeling it was a waste of time. I know there is more going on in my brain than just a "migraine" I use to suffer with really bad migraines and the pain I get now is not a migraine.

    The blood clinic seem to know what they are doing apart from sending appointments out on time. ;-) but when I get there they are more understanding and are not rude,

  • When you are at your appointment at the blood clinic next week please mention these symptoms and make sure they are addressed. Once they are then mention what happened with the neuro as I would be interested to hear the outcome. My bet is that they will make excuses for him which is what tends to happen after poor care - medics tend to stick together. If that is the case you will be wasting your time to pursue it further so you will have to make a formal complaint about your treatment. But please make sure you get those symptoms treated first and let us know how you get on. x

  • However making a comment anonymously if need be via NHS Choices or Patient Opinion - might be the easiest option.. They do get scrutinized by the hospitals... as the CCQ also read them... worth a try! I would myself. I never got anywhere with my care either for myeslr of my children without speaking out. Your MP would help, and they may admit their error but will be on better behaviour next time, but is is a personal choice. Mary F x

  • I think with some doctors if they are not sure or don't kbow about a subject that is when they tell you you have not these things, this is where errors of judgement come in,if they are not sure then they should go ask a expert in that field, fobbing off someone who is ill can lead to death if not spotted quick enough.

    In my job I struggle to remember simple things as you can see by my texts even spelling and writing, at work I ask even if its a simple word, I dont get judged for it, though not life threatening it would not look good poor spelling on a letter.

    I think some doctors do need to be told to talk to other departments, I am still waiting to see a stroke doctor for a follow up. Thank god I have a great GP team.:-) all little battles that are won means the war of getting as much info about why my body is being a pain to live with is not over.

    Yes have reported his manner to the neuro clinic manager today, as been told to lose weight when I am dropping dress sizes to quickly is insulting, plus the meds I was on were weight gaining so can not win.. This is ruining my social life and work life, the poor GPs send me to get checked out and have to rerefer me again and again.

  • Well Done you and please keep us posted as to how things are going, I really hope things start to improve. x

  • Could the HSF, or Prof Hughes and his team, or the Tommy's team write to the neurology organisations with information on APS??? Could 'we' (not sure who I mean by 'we' :-)) ask them to do this, given so many probs with neuros???

    I have been waiting for a neuro appointment but wasn't pushing (too much else going on) and in any case I was aware of the probs people have with them. Now I don't think I'll bother pursuing it.

  • Or maybe next time there's a big APS conference/meeting or something, the theme or one of the themes could be neurological implications of APS????

  • I swear one of the best neuros i had was a young intern when i was in the hospital. She was spot on about everything and a fantastic bedside manner. We need more like her.

  • I have a great neuro who I see for my chronic migraine, I respect him highly and he is the one that did the bloods the first time round (2/3 years) that showed I had a very very high IGg ACL antibody test, and followed up by asking me if anyone in my family had had miscarriages... They haven't (not many pregnancies that I know of) and so it wasn't followed up.

    HOWEVER with this latest high result (he had the results forwarded to him by the Prof rheumy that I saw for a rule out of a different auto immune condition) he's written that he thinks if it is Hughes that I have, that it is "not relevant to her neurological status"... because the MRI and MRA that I had 3 years ago was normal... I consider him to be pretty well read and aware but he doesn't have a clue that Hughes can cause headaches, migraine, balance probs etc...GAH!

  • I too have seen an excellent neuro who suspected APLS the first time he saw me, ( during that " missing blood work" gap which began after my first TIA and persisted for 2months thereafter. ) So there are some sympathetic ones out there.

  • I too have had several episodes that I think were TIA's, went to my GP who referred me to the local hospital stroke clinic, they did CT and MRI, said that nothing was abnormal, therefore they consider the episodes to be migranous! I have had migraine for years and they have never been like this.,He does not want to see me again, so I guess I am stuck with 'migranous attacks'!

  • TIAs are not easy to spot I was told as the blockages can move and clear in the time you wait for a MRI. I have white spots on my brain that have not been fully explained, they keep saying wear and tear but, these spots are they slowly growing, :-( I wish doctors would be clear with things, you worry more if you don't have a clear picture, all very good being clever at medicine but not have the people skills to get across what your explaining.

  • restless legs all day and last night. Think needs a little more warm weather may help my joints a little. Also today my mind has not been fully on the job, does anyone else have that trouble?

  • Hi, iv just had a bad experience at my appointment this morning,, iv had APS for 4 yrs and has never been told about any symptoms so i asked him today about them like dizzy spells and tiredness he said there was no connection between any other symptoms other than blood clots and problems in pregnancy, he made me feel like everything i experienced was a lie and all the research iv done is worthless,,

  • Sorry to hear about this but Im afraid it is a bit of a common occurrence. You have two options as I see it. Download the information from the Hughes Syndrome website that backs up your assertion about your symptoms being connected to APS and send it with a polite but firm letter to the Doctor you saw this morning. Tell him that you were disappointed with his attitude and felt that you did not get the support that you deserved out of your appointment. Attach the info and tell him you are enclosing the research that shows your symptoms are part of your condition so you would like to re-book another appointment after he has had a chance to read and absorb the info so that you can have a more meaningful session which can result in some benefit to you.

    Alternatively still do the above to make sure he gets educated but find another APS specialist. Putting things in writing makes it hard for them to ignore. Let us know what you decide and how you get on. xx

  • I think that some doctors just ignore that fact they don't know everything they make out they do. Some doctors are so up themselves that they forget that APS effect people in different ways.

    My APS effects my memory, my left side of my body, I have sheer pain in my head that is not a migraine. It effects my mood, I find I lose my temper over the smallest of things, the sight in my left side goes along with a pain in the right side of my head. I have at least six TIA but have never got to see a stroke doctor. I have been told im drunk when I have not had a drink since 2011. The worry I have that the white spots in my brain are not being checked often enough, walking with a crutch is a pain in backside when I am at work, forgetting what. I am saying halfway through discribing something to a customer. Tingling in my hand is annoying too. . Rant over

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