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Need some advice.

Since yesterday due to the humid weather I’ve had a flare up of symptoms. I started to get tingling and fatigued throughout yesterday.

I woke up today with a cold tingling sensation going down my right thigh which increased the buzzing sensation in my leg.

The upper are of my right arm is numb the lower are of the arm is burning with muscle pain and tightness.

I am keeping cool but it’s not helping at all. I don’t have a diagnosis and am not under the care of a neurologist and refuse to see anymore.

Would I benefit from attending the A&E or would it be a waste of resources? Any tips or help appreciated.

Thanks.

I don’t personally think this is an emergency, but I do think it’s one for your doctor, and that you might need to overcome your refusal to see a neuro. I’d ring the GP first thing tomorrow, and explain that symptoms are back. As you’ve gone anonymous, I can’t review any previous history you might have posted, but I assume there has been some, to make you fed up with neurologists.

I think you need to tell the doctor the matter’s unresolved, symptoms have returned, and you are requesting further investigation. If Neurology has so far drawn a blank, perhaps your GP can suggest another line of enquiry? Rheumatology is a common candidate, where Neurology hasn’t found anything, but that would be up to your doctor to decide.

Tina

Thank you, I will ring the surgery in the morning.

My GPs have asked me to see a neurologist which I’ve refused. They called me last Friday asking if they had my consent to refer me to another neurologist. I’ve seen many in the past several years, also have been investigated by rheumatology who have found no cause.

I’m sorry but I refuse to see anymore neurologist’s, I gave up a while back but was encouraged to not give up which I did. I saw one a few weeks back if you are wondering what the outcome was I walked out on him whilst the appointment was in progress.

Thanks for your reply.

Hi anonymous, Am having a few probs with the layout of this forum site and cannot get it to work right so if it seems to never end I apologise. I think that most diagnosis take time. My back first went at fifteen and then periodically over the next 15 years but it was not until my early thirties that it was taken seriously enough for me to be sent to an orthopaedic surgeon who diagnosed a prolapsed disc because it had gotten so bad, part of me kept thinking if only they’d listened sooner. I then fell and damaged the leg muscles in my right leg, was on crutches for 6 weeks and suffered arm pain but was told it was due to using crutches sent to physio who again dealt with my back problem not the arms. It has taken me the best part of twelve years and some really arrogant doctors (GP not included) for them to admit I have CFS/ME and then there’s no real treatment. Part of me feels that it was a waste and asks myself why put myself through that, but part of me feels it is my right to know and now I tell myself if they cannot find out what is wrong it’s not my fault but theirs, after all they are qualified in this, I’m not. I am sure that if you told them they were failing you, someone would feel ashamed enough either to admit they were and try harder. It can also be cathartic to tell them exactly what you think rather than walking out on them and it also gives you back some of the control that your illness has taken away. Of course not all doctors deserve a telling off but you have feelings too and as I always said to any teacher’s that upset my sons, it doesn’t matter if you don’t think you’ve done something wrong, if my son is upset then you have, and this is same with doctors. Mostly I am trying to say don’t give up trying to find out what’s wrong after all if it is something that can be treated to give you back your quality of life then you have the right to it. Unfortunately if it can’t at least you know and there’s always the other chestnut of by not knowing you could be doing something to make your symptoms worse without realising. You have a right to NHS treatment so why give up that right just remember at the end of the day you’re helping to keep him employed, not the other way round. Good luck to you. x

Thank you for your reply. I understand your point. I still refuse to be seen by a neurologist. The first one I saw privately did diagnose me with CFS/ME and suggested that the main reason for my symptoms was not having any children, once I have children i wll get better. I’ve seen many privately and on the NHS for some reason neurologist’s are the only health professional who either can’t find my medical records or don’t have the time to go through them. What kind of nonsense is“ you don’t have any chldren that’s why you have all these symptoms“?

I understand why you feel let down by the neuro’s you have seen thus far, especially after that comment about it being because you gave not re-produced. Which and I’m no doctor but sounds like a big load of cr*p. while I understand your anger/frustration/skepticism you are only hurting yourself in the long run. The neuros aren’t going to ask for your forgiveness (which they should) but there are too few of them in the UK and too many patients. Unfortunately we may not get the most charming person but if they can help, then what’s 1 hour of gritted teeth? If you don’t consult a professional how can you ever expect any treatment or advice? Maybe speaking to a PALS (patient advice liaison service) worker at your hospital could be a start. Explaining your previous disappointment and asking for a list of other consultants near you and interview with them until you find one that gels. Otherwise your going to have to do this on your own; but its your health and your life. Best of luck.

Hi Anon, if your GP is advising you to accept a referral to a neurologist then if it were me, I’d take it. If after further tests nothing shows up, but your symptoms persist, then another avenue should be sought. Ultimately you need a diagnosis of some kind to move forwards in terms of treatments (and medications) which could help you. I realise you’ve not had a good experience with neuro’s so far, but there are some good ones out there. I agree with Tina that going to A&E isn’t the answer - it doesn’t sound like a medical emergency, but obviously I’m not a doctor. Good luck with whatever you decide and do what’s right for you. Debbie xx

Thank for the positive and encouraging replies. I spoke with my GP who suggested I should have attended A&E to rule out a possible Stroke or TIA. I will not attend the A&E as I know it’s not a stroke. I have been given a few days to reconsider going through with my referral, at the moment I still refuse to see anyone in neurology or neurosciences. My vision in one eye has dropped to 6/18 due to incompetency might as well wait till I have children the vision will come back it’s nothing to worry about as long as the neuros get paid its all good.

Oh anon, you sound so angry. And understandably so. You’ve clearly had some horrible experiences. I would take the new referral if I was you though. What would you do if you went to A and E an they suggested seeing a neurologist? I know sometimes it feels like our principles are the only thing we have but please don’t let that stand in your way of getting decent treatment (and unfortunately far too often it is a case of ‘if at first you don’t succeed’) Take care xx

Hi again Anon, the decision of whether you see a neurologist does of course lay with you, but, is it not better to see him / her to at least rule in or out whether your symptoms are of a neurological nature; what you then decide to do with that information would be your choice but at least you’d know. Maybe your GP could arrange a referral with a different neuro this time? Refusing a referral won’t affect the neuro’s like it may affect your health long term and you are the important one in all this. Good luck. Debbie xx

Thank you all for taking the time to reply they mean a lot to me are very encouraging.

I am bitter not angry I have seen seven neurologists in the past 2+ years. I will give you a brief history as to why I refuse to see anyone.

  1. First appointment was a private referral. The neurologist had no medical reports or records with him. After asking for a history he said the reason for my medical symptoms is childlessness if I start a family all my symptoms will get better and to help you with your invalidty benefit claim I would support a diagnosis of CFS/ME. He then asked me if I had internet access if I did he would be able to give me a link to website of his friends which explains my diagnosis in more detail. I got a blank envelope with www.neurosymptoms.org noted on it. (No mention of benefits was made in the referral as I was already receiving benefits nor were benefits mentioned at the appointment. why would I need help with claiming them?)

I asked to be referred again to this neurologist after a couple of months as he came highly recommended, again a private referral. The neurologist came to call me didn’t say my name again “You again, what are you doing here. I gave you a website I can’t help you.” If the neurologist was aware they can’t help me then obviously they were more interested in the money for the appointment. Common sense would have been to write back to my GP saying they can’t be of any help.

  1. Second neurologist did checks found some abnormalities during the appointment prescribed medication for spasticity ordered an MRI, based the lab report the MRI was normal but according to the neurologist I have some white matter disease. My brain is 30-35 years older than it is, she also noticed some abnormalities but could not say what they were caused by. She showed me the images I left the consultation with no answers being discharged back to the care of my GP. I went home with the impression at my age I’ve started to develop Alzheimer’s disease.

I was referred back to this neurologust by neurologist number three unfortunately due to the diagnosis made by the neurologist who is part of the same trust they also couldn’t find anymore abnormalities it was all made up etc.

  1. Third neurologist said if I had taken copies of records documenting details of attacks then they would be able to diagnose as I had been thoroughly investigated by other fields of medicine. They said they would expect a local neurologist to be able to deal with my case it’s unfortunate that I had to travel to the hospital. They said if I wanted they would write to the second neurologist advising them of how to manage me. It would also save me travelling to the hospital I agreed.

  2. Fourth neurologist told me that based on the past letters it’s highly unlikely I have any inflammatory disease but based on history an inflammatory disorder can’t be ruled out. He convinced me to have a LP results back showed systemic inflammation despite the results I was promised an appointment to discuss things further which I now realise was a subliminal way of getting my consent for a LP.

  3. Fifth neurologist said they will try and chase up on my results and confirm whether or not I had systemic inflammation ordered an MRI scan was advised to keep a file due to being a complex case. I was advised I’d be seen again. I have to give credit to the neurologist for correcting the mistake that the fourth neurologist had made. I was always being told by my GPs I’m making up things if the neurologist has written to them my csf was normal then it’s normal. The fifth neurologist wrote to my GP confirming that I had been telling them the truth about my csf results.

Follow up appointment the neurologist refused to go through my medical file because the letters were not in chronological order and I had more than one letter in a sleeve. They didn’t even look at the file I was discharged with no answers labelled a complex case.

  1. Sixth neurologist did tests etc said the only answer to my medical problems and symptoms is multiple sclerosis there are about 10% of people with no abnormal test results and they are diagnosed but unfortunately those 10% are not me.

  2. Seventh neurologist wanted to explain to me my symptoms are real and that I’d have to learn to live with them. They had seen my complaints and though they would see me because they are the clinical director for neurosciences. I told him about my attacks etc they said they didn’t have any evidence. I gave him my file at the end of it which they said I was telling the truth all along but unfortunately they can’t make a diagnosis or recommend any treatment options as they had no powers.

I have been thoroughly investiagted by other fields of medicine I’m not going to list them.

The only thing that neurologist’s care about is money. I can vouch for the report that the UK is the third worst country in Europe when it comes down to neurology. I wouldn’t be surprised if next report reveals the UK has the worst neurology services in Europe.