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So angry with neuro!!!!

i;m so damn angry i can;t even speak without crying or ranting. My neuro initially told me my symptoms were stress and was really dismissive. went for a 2nd opinion in which another neauro diagnosed hemilpegic migraine and an eye specialist agreed with this. To my surprise original neauro called me back following some positive blood test results and an EMG test. In the appointment he said he was referrering me for vestibular tests…finally! Anyway, today got a a copy of a letter he has ent to my GP. The letter bears absolutly no resemblance to my appointment and he has told GP he still thinks i am suffering from stress and that my symptoms are caused by " persistant hyperventilation". I do not suffer any type of hyperventilation! he also said he could see no clinical sign for the positive anti nuclea antibody blood test results, well he didn’t examine me or ask anything related to them. He has never even asked about aby family history. I hate doing it but i’m going to have to complain about him to his hospital and to BUPA. He is totally disinterested and just seems to be really unimformed about many things. I know that stress was not the original trigger for all of these symptoms but since i have been under his (so called) care, yes I am stressed. he even had the cheek to say to me " i don’t know why you feel the need to put a label on your symptoms", err excuse me, i’m not looking for a flippin label, i’m simply looking for some kind of definate diagnosis and the correct treatment! So much for private healthcare!!! Just going round in circles (literally) and not getting anywhere. i just don’t want to have to see this guy again, in my opinion he just doesn’t give a damn!!!

I’m sorry about that! What does you GP think of “persistant hyperventilation” it doesn’t sound like specialist neurologist expertise? What does your GP think about the positive anti nuclear antibody (ANA?) blood test results?

What does your GP think ofthe hemilpegic migraine diagnosis?

haven’t seen GP to discuss the hypervenilation or blood tests yet but i’m going to ask her to refer me to a rheumatologist to investigate fibromyalgia and going to ask her what csn be done to investigate the blood test further as i have found out that a positive result such as mine does often point to an autoimmune disease, I don’t want to see this neuro any more he’s not helping, just guess i’m going to have to push to have tests to eliminate or confirm other things. GP sure about the aura as she doesn’t know enough about it but there are specialist migraine clinics so i’m going to see about getting referred there as well. Just want to get to the bottom of the problem instead of just being left with it.

haven’t seen GP to discuss the hypervenilation or blood tests yet but i’m going to ask her to refer me to a rheumatologist to investigate fibromyalgia and going to ask her what csn be done to investigate the blood test further as i have found out that a positive result such as mine does often point to an autoimmune disease, I don’t want to see this neuro any more he’s not helping, just guess i’m going to have to push to have tests to eliminate or confirm other things. GP sure about the aura as she doesn’t know enough about it but there are specialist migraine clinics so i’m going to see about getting referred there as well. Just want to get to the bottom of the problem instead of just being left with it.

I’m not an expert (far from it), but with a positive ANA test I would have thought you’d need to be referred to another specialist. There’s an illness called Hughes Syndrome which mimics MS symptoms but is to do with the blood. Now I really am not trying to diagnose anything, but it needs to be ruled out for an MS diagnosis anyway. I’d ask for a separate referral to a haematologist if I were you. I went though this as I’d had previous ‘sticky blood’ issues which required blood thinning injections throughout my two pregnancies. For me, it was ruled out and I got my MS dx anyway! Hope you get some answers soon. X

Oh Bunny, that is complete and utter pants. Am really frustrated for you.

I had a chest specialist tell me that the reason I had been admitted into A&E several times was because I was hyperventilating. This was complete and utter tosh. At no point was I hyperventilating. For goodness sake, I was having a laugh and a joke with the paramedics - does this sound like an anxious person???!!! I did get my own back though, when he saw the A&E reports, my sats had dropped to 92% and when you hyperventilate, your sats stay at 100% and he had to apologise. Tee hee hee.

I don’t really have any advice, but I do want to send big hugs. Good luck with the complaint. Get back onto your GP and if s/he won’t do anything - get a new one!

Much love

Angela xx

So sorry you have had such a grim experience.

I had a very similar neuro experience recently. I have still not completely recovered!

My consultant also neglected to ask about family history, and also seemed quite disinterested and dismissive, (despite the fact, just like in your experience, it was he who recalled me after seeing MRI). I have honestly been more stressed about my meeting with him than I am about anything else at the moment! I really don’t think that some neuros fully ‘get’ what an impact their attitude has on a patient - it is the difference between a patient leaving the consultation room thinking “I am unwell but I trust my doctors are looking out for me” and “I am unwell but I don’t have much faith im my doctor because they seem completely uninterested in working out what’s going on” .

I think the worst thing for me is feeling that my consultant is taking the position that 'we will only undertake serious investigations if you completely lose all mobility etc — because yes, I understand that things need to be seen in perspective, and therefore my case is not as urgent as that of someone who is suddenly completely unable to walk - but that is not to say that we should be ‘just left to get on with it’ either - especially if your symptoms are impacting upon day-to-day quality of life.

I think for many of us on this forum - patients undergoing assessments for MS - we are quite bombarded with questions and assumptions (from doctors) about our anxiety levels. I suspect that this is because mental-health problems are very common, and (I’d place a fair bet) that oftentimes cases assessed by neurologists possibly do turn out to be anxiety-related . BUT… a skilled consultant should be able to convey this to patients without making them feel belittled - because actually, if anxiety is the route cause of symptoms, then that is good news - because people can recover from anxiety. Yet somehow, when some doctors state they think symptoms are caused by anxiety, they sometimes do it in a perjorative way (which is completely unacceptable). Furthermore, there is a danger that in many cases, ‘anxiety’ can be a very ‘lazy’ diagnosis - oftentimes, it is not the right answer. Certainly, from what you have stated here, there does seem to be other possibilities - you have ana tests, pevious diagnoses of hemiplegic migraines, and are starting to conider fibromyalgia - if I was you I’d probably want all those looked at in more detail

SO - If you think your neuro’s must recent letter about ‘anxiety / hyperventilation’ it is not likely to be the correct diagnosis for you (after all, you are the best person to judge weather you are anxious or not, whether you hyperventlate or not, and also you are in the best position to assess how any of this correlates (or doesn’t) with your physical symptoms!) - then I think it is definitely woth asserting your views.

Furthermore, if a consultant has been dismissive / rude / patronising and made you feel as bad as you do now - then you may well want to formally complain.

I am so sorry you had such a horrible experience. I really hope you get some answers soon, and that you get the right assessments / diagnosis / treatment - we all deserve that much, at the very least x

I’m so sorry you’re having even more problems. They really do love to throw in anxiety! I’d be surprised if you weren’t anxious after all they’ve been putting you through! Keep smiling and get back to your GP. (((((BIG HUGS))))) xx

Hi Bunny,

I know how you feel. I am not a neuro or anything like that but if you have ppms , this is very hard to diagnois. ANA could be hyper/hypothyroidism . I have this and this can give ANA in blood test which is anto immune disease.

Do not give up , its your health. It took over ten years to get a diagnosis for me. Don’t be worrying either as it dose make symptoms worse. So hang on there and you will get answers.

DX

You can pm me if you like.