I need to vent somewhere and if you don’t like it please scroll on. I feel that this is a safe place and am struggling with my recent neurologist appt.
anyone get quickly diagnosed with depression by some stupid survey that they give you before the appt?
Well when they ask you if you have no appetite, not alot of energy to do stuff, and not alot of interest in doing fun things, apparently thats a quickie ticket to a label they happy to stick on you, and completely ignore all the symptoms and symptoms that are related to your illness (Autoimmune Gastritis can cause symptoms of feeling full easily and no appetite). Lack of stomach acid causes nutrients to not he easily absorb and often deficiencies occur. I don’t feel well, but with injections and supplementing I have felt better than in the past. I find it upsetting that there isn’t enough time for doctors to properly review our cases and there seems to be less information regarding deficiencies and vitamins, and have a huge sliding scale on the depression survey i got 10/27 😑🤦🏼♀️, that’s not even half and still got a positive! But it yet I can perform the Romberg test and fail the last part (heal to toe standing with eyes closed for 20 seconds) and get a negative.
Symptoms come and go and they don’t matter. Atleast I will get an EMG test but unfortunately he’s performing it😢. I’m starting to see why some of my family members had little faith in doctors. I’ve brushed aside and treated rudely by a more than enough, I’m sure anyone else reading this can relate. The combination of not feeling well, and having weird symptoms, and being brushed off yet paying alot out of pocket for appts and things, can get frustrating and saddening causing a person to feel symptoms of depression, especially when you’re made to think that the symptoms you mention and or results you get from labs do not have anything to do with your fatigue and paresthesia.
I ended up typing him a letter and correcting as many errors as I could find on his oral dictation of our appt to avoid further mis information. Hopefully he will read it with an open mind. But I refuse to sit an let any doctor make me feel like shit because they think they know what is going on with me after only reviewing my file for a minute or two and questioning things that have been happening for years, including my past diagnosis of Grave’s disease that I have documentation for.
** this is why we need to do our research and obtain copies of our results, so that you can have peace regardless of doctors and their opinions/ mis information. We need to be able to speak and inform them without blowing up in their faces, as escalating situations will not bring about change or solve the problem in a constructive way.
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JennaShi
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Feeling your pain. Have had many similar experiences. Have had more bad experiences than good with medical professionals. My current GP is great but I had 20 years of poor medical attention prior to this one. You are right on so many points and your ranting is valid.
Jennashi this is not aimed at your comments - but after a day like today then I read the comments on sight , I wanted to share first what you could do then on-site into our world — You can always request a double apt if you feel you don’t have time to talk .. but sometimes people forget the strain the NHS is under - the pressure of patient after patient moaning they are late - the time wasters taking huge amount of the day - the interruptions - please remember DRs and practitioners are humans , studying daily to keep up with changes . They do not have hours to research like pts do . They have got to follow new NICE guidelines- sometimes they want to refer you , do tests but the local CCGs dictate who and what they can refer , treat . Prescribe and if the DR / practitioner steps outside and are caught ( the audits we have to do are awful ) Our registration and career are under investigation- I have B12 , I have malabsorption, I have skeletal problems , fibromyalgia- I work full time as an advance practitioner and I cannot get the treatment I want - but I know I cannot blame my GP except they are anal and won’t give me my b12 vial to get colleague to give !!!! Please can everyone realise we are not stupid or ignorant we do actually care xx
There are really good people out there in the nhs who do care, who talented and do their very best but then there are others that I am sorry to say have lost the art of caring -whether thats down to the nhs being over stretched or doctors being so restricted over what they are allowed to do or prescribe, or the sheer number of patients passing through their doors I really dont know.
Whatever the cause ALL patients deserve to be treated with respect and dignity with care and regard and for practioners to carry on doing their best for their patients. Since the 10min rule on appointments its nigh on impossible to get a practioner to look at you as a whole person as they simply dont have the time. I remember one classic time when mypoor GP ran out of time & said make another appointment and I will exmaine you. I did-it was for a whole month later and so my diagnosis was delayed.
So I decided to see a private GP as I was genuinely worried that something oeuld be missed from these half assessment conducted over such a long period of time. I got more out of that comprehensive 40min consultation than the numerous 10min appointments that dont give the doctor time to think!
"ALL patients deserve to be treated with respect and dignity with care and regard and for practioners to carry on doing their best"
Couldn't agree more...I had several bad experiences including ..
being shouted at by a GP
snapped at and spoken to aggressively by a neurologist
being told aggressively that I was too expensive and that other patients were missing out because I was costing too much...probably because I had the nerve to politely ask for referrals. I could have accepted them saying politely that practice finances were tight.
having pressure put on me to leave one GP practice by all the GPs
regularly leaving appointments in tears from the lack of concern and unkindness, I just wanted to be treated with respect
being told to give up trying to find out what was wrong with me
a GP telling me they were shocked that I was making so much effort to find out what was wrong...what option did I have, they weren't making much effort?
pressure being put on me to accept a diagnosis of psychosomatic symptoms when I knew there was a physical cause to majority of my symptoms
being diagnosed with hypochondria ( chronic and unfounded anxiety about having a serious illness)....I did have a serious illness.
Numerous specialists, including several neurologists, missing multiple typical symptoms of B12 deficiency despite me asking if B12 deficiency was a possibility
Several occasions of being told my blood results were normal/no action then I found abnormal and borderline results when I got copies
asking for a trial of B12 injections and being denied
GPs being irritated by me writing letters even though I explained that this was the only way I could explain what I wanted to discuss due to brainfog , mind going blank, poor memory, lack of coherent thought etc
If they had put all the clues together, I would not have had over 15 wasted years.
"anyone get quickly diagnosed with depression by some stupid survey that they give you before the appt? "
Yes....I remember thinking how stupid it was and saying to the nurse that anyone with chronic fatigue is going to get a diagnosis of depression even if they're not depressed.
I think I will always have some level of distrust of doctors although GPs at my current practice seem more caring.
There were times when I politely asked for a double appointment as I had too much to discuss in a single appointment and then when I got to the appointment I shut up in shock at the attitude of GP.
Sadly GPs don't always follow NICE guidance. Currently there are no specific NICE guidelines on Pernicious Anaemia but there is a NICE CKS summary on treatment of B12 deficiency.
Many people would be grateful if GPs followed guidance in the link above but from comments on the forum from UK members, there appear to be some GPs who don't. It seems to be particularly those with neuro symptoms who struggle to access the recommended treatment.
I agree that NHS and health professionals are under tremendous strain and that there are GPs out there who want to help but are constrained by finances and practice, CCG guidelines etc.
I have had way too many bad experiences with doctors to believe that they mostly care. They mostly don't. It's just a job and patients are just a bunch of strangers. I always want to tell a dr I am seeing to treat me as if I'm Oprah, because I guarantee you Oprah gets treated far better than I do.
I worked in the NHS for 36 yrs. Not as a doctor or nurse but as a band 4 Nursery Nurse in a clinical setting.
The system are present is simply not working. Staff morale has been at its lowest. Administration duties are being done by highly paid clinicians rather than a lower grade that is quicker and more efficient with administration. Most big hospitals admin is appalling and all on different IT systems. Consistency has been lost so most have to start a 10 minute appointment from scatch. It is counter productive as you have you keep going back. Vicious circle of starting from scratch. With no breathing space one consultation runs into another for the doctor or nurse. They switch off. . The pressure is enormous.
However no where near the pressure the patient is under.
The saying you' have to be well to be ill ' is so true to navigate the system.
When I couldn't walk well at all no one offered help in hospital or surgery. Like a no touching policy existed. I crawled to the toilet. Another patient watched the door!
Specialists do not talk to each other.
The only way a family member got a diagnosis after 21 years of being sent round the system was being seen by a general doctor in casualty who took an interest and listened.
Common decent respect seems to have gone.
It works both ways.
I've never been this ill before or for this long. I've had a real shock. To see and listen to other patients in the waiting room. People seem so on the defensive. The doctor wants to get a symptom to treat and move on. I'm frankly appalled at the amount of drugs they throw at you on a trial and error basis. Most patients want a diagnosis to understand.
As a practitioner having to cover your back all of the time. We are in a world of suing.
So many systems have been tried.
If you get a good Gp mine is really trying now. She went over the 10 mins and got a phone call from receptionist. Total interruption.
That particular consultation went wrong when I realised she was looking at wrong one before. Basically pushing for me to take a antidepressant. We'd moved on from that the consultation before! !
The system is depressing.
Doctors are losing skills as no time for examination.
Most people are willing to wait if they get the attention they need .
Too many managers and not enough on the ground.
Yes there are good doctors and nurses. All started with a wish to heal.
Yes practitioners are human and need proper breaks and administration support. I used to work 84 hour weeks on Maternity. The team was tight and supportive of each other. Team work I feel is lacking now as staff turnover so high.
Let's hope our NHS can improve again.
We do need to rant though. This forum is the only place where others get it!
Oh yes I do agree believe me Ive had my fair share of absurd (am being polite) consultations over the years; Ive found my self in the position of having to diagnose myself and then self treat more than once -three times actually -different chronic conditions and then spent long months and in one case years arguing/convincing my local surgery to prescribe the necessary meds!
On the up side my life has been saved by skilled nhs doctors and nurses -once in labour when my poor first son got stuck & without their expert intervention we wouldve both died; and second when I was diagnosed with breast cancer with a massive extremely aggressive tumour but the nhs treatment heavy duty though it was put me in remission - now for over four years. I cant condemm the nhs when theyve saved my life twice!
Is there much to improve in the nhs? Yes definately. Are the shortened app time sensible? No! Are the scripts and the strict prescription list doctors are allowed to prescribe wise? Nope? Doctors have become so constrained by the protocols they have to follow and blood tests that are intepreted for them that frankly very little independant doctoring goes on. So if you fit their script you get treated but if you dont you dont..... so your either dismissed or best on offer is sign posting on.
Have I experienced badly bahaved, rude & arrogant or patronising doctors yes!! Have I had doctors who have made up lies about a condition that I dont have to get back at me -yes! Have I had doctors who blame me -yes!! None of this sort of treatment is EVER justifiable no matter how stressed the system is......
I agree . Acute care is still doing very well. I support the NHS. I want it to survive and improve. As I said I've put many years in have been one of the cogs.
Doctors are definitely being deskilled.
The arrogance is unacceptable and as I said earlier it's far better for a doctor ti say I don't know but let's work together to get you treated.
B12 defiency, PA ,nutrition , hopefully will become a 'special interest to some doctors. Then they can advise the rest. This business of refusing b12 injections must stop. Nor everything fits in that tick box.My gp preactive has 5 doctors. Only one will not entertain the idea of a personal treatment plan for b12 injections. My gp said she is learning from me!! Only said once lol
Work full time at that level with those medical conditions. I can’t do it anymore. It’s been 3 months out of work and I’m miserable. I’d do anything to get back to work
A lot of us have been here and all I can say is I 've learnt to let this roll off me. I' ve found supportive doctors who listen, they do exist! But the bad experiences have marked me. I have an appt with a haematologist in January that I don't wish to go to as I'm not in the mood for a new doctor who may roll his eyes or even drop his pen when he hears I'm self injecting! My gastroenterologist said if it happens ignore him, you never know it might be his area of expertise, so I'm giving it a go. Stay positive.
Very familiar. Sorry it's such a struggle to be heard. I've almost got depressed being told and lrescrobed antidepressants so often. If u get a glint of 'light' my mood lifts. Farogue mimic depression symptoms. I stay 'flat' tying to avoid headaches.
Why oh why can't medics trust we know our bodies. They don't seem to have enought time or the ability to really listen. I'd rather they say I donr have any answers at present rather than sticking an inappropriate label on you so they stop looking.
I paid as the NHS neurologist discharged me!! Even that was rushed and he was looking at the clock too often and concluded he'd put me on medication he does for everyone......so not individual. I didn't take it. ....propranolol
Onwards and upwards. ...move on and believe and trust yourself.
There's an abundance of reports on healthunlocked of people's unsatisfactory experiences with GPs and other health professionals. I think we all understand how much pressure they are under but that should never be an excuse to treat patients with genuine health concerns with such disrespect. Rant away JennaShi. I think many of us empathise with you.
Having PA really is a difficult and can be a nightmare journey at times, which is clear from all the posts. As a nurse I would just like to add to the mix that the questionnaires re depression, similar to a well known one such as 'the Edinburgh Post Natal depression score', is predominantly just a tool. The score can never be considered in isolation, professional judgement far overrides that, hence the GP or any professional using such a tool really needs to know their patient or at least have time to gleam facts and listen to a patient. Upwards and onwards, and good luck because we all seem to need it xx
Yes and with the Edinburgh post natal depression form our team found the most depressed woman scored okay as it's obvious what to tick if you don't want help or a label. So totally agree if used correctly. Same as the non attenders to groups I ran. Diffucult Tools are good as long as the form does not replace judgement and visits. I personally think having been in healthvisiting teams for 14yrs. Some not so wise or professional use the tool simply to cover their backs and tick the box on the template.
Back on topic.
A form would be useful in gp surgeries with a list of known b12 / PA symptoms as a tool to help doctors prescribe b12 injections rather than looking at numbers on blood forms? I will suggest it at my surgery for one of their meetings. Also to my nurse friends at theirs. The nurses are giving the injections with no training about the condition. They were all shocked by my symptoms and amazed by the improvements especially when on no other medication.
Thanks for your reply Nackapan. Very interesting. I am a health visitor so totally relate to all you are saying x
I can sympathise with you JennaShi, it feels as though you are dealing with people who are practicing under false pretences sometimes and they have decided what is wrong with you and which nostrum, potion or pill you should be palmed off with as you are walking from the hip displacing chairs in the waiting to their audience chamber. I gave up discussing Peripheral Neuropathy over two years ago and told them I was going to self inject - they taught me how at the start - and to hell with them but thanks for the 5 doses a year.
Then, last November, after the usual annual cardiac assessment blood tests I was summoned, urgently, must attend, vital and was this apointment convenient and please bring a urine sample. They had seen my blood sugar level was just over the threshold for Diabetes Type 2. I was amazed. The full weight of the surgery was mobilised, I was to have a full assessment by the Diabetes Nurse Practitioner. It would take about an hour and then I was scheduled for a briefing by the GP. During this thorough work up the bossy nurse ordered me to take a 30 minute Brisk walk every day, emphasising the Brisk. I was to lose weight and attend a special day course to be given detailed instructions of how to live with this new to me scourge. Then she took my blood pressure with one of those old mercury things and everything changed, she bustled off returning with a machine she wired me up to and shot off with the results on a supermarket till roll print out.
The Brisk walk turned into a Gentle amble, I was to take these pills and be careful not to get a cut and if I did to go to A&E for them to control bleeding. (I have Atrial Fibrilation). But the most important result was I have to be monitored every 3 months by the Podiatrist to check my feet for circulation and, guess what, Peripheral Neuropathy. This wonderful lady did all sorts of tests and declared my circulation fine but I have quite advanced Peripheral Neuropathy with no sensation of touch in the soles of my feet. Isn't that absolutely bloody marvellous, they now believe I have nerve damage because the toe nail trimmer has told them. I have been reporting a whole host of symptoms for the past two years. Now, at my last session with the GP I have an appointment with a Consultant Neurologist, admittedly not till next April, but I have got one. The GP knows I SI and why but wasn't allowed to do anything about it as the head pollock at the practice wouldn't agree. There is now some possibility I might get some help with it after all.
And the Diabetes? It was declared with a blood sugar level of 5.5 whatever's per thingy, after losing 2 stone, regular daily walks with my daughter, eschewing sugar and spice and anything nice, I can now wear clothes I was reluctant to donate to charity and my last 2 blood sugar readings have been 4.3, chocolate here I come. And I have a diagnosis of Peripheral Neuropathy, a Neurologists consultation appointment, and enough stock of hydroxocobalamin injection medium for 420 days at current usage rates.
I wouldn't say life is good but it is a damned sight better than it was last week.
Keep plugging away at the GPs JennaShi, you never know what might happen. The GP might even get diagnosed with PA, it's possible, that would make sure they knew something about it pretty damned quick.
It seems even if you have Private Medical Cover there are certain things that are not covered and that includes B12 and other important tests for nutrients in some cases. It seems the Insurers hold the purse strings. In the US - Insurance companies are heavily influenced by Big Pharma I have read. I cannot help pondering the CCG's are paving the way for a more American system with Private Medical Cover in the pipeline - especially as patients become more and more frustrated with the present system they may be tempted to think the private route is better.
NHS England differs from the NHS I believe - and the head worked for one of the biggest private medical insurance companies in the US - sigh ...
We have to hope soon many GP's will morph into Dr Rangan Chattergee and Functional Medical Practitioners will become the norm ! Western Medicine has become a business model so it is not about wellness but about money making pills for all the ailments that afflict those with conditions they do not test for or treat correctly.
After living in Greece for the last 15 years I have enjoyed excellent medical care - well care that suited me. I was prescribed a thyroid hormone T3 and purchased OTC for just over a euro. The very same pill is VERY RARELY available in the UK due to cost. Two companies overcharging the NHS to the tune of £250 for the same thing. Like thousands of others I will be forced to buy on-line. The government are very aware but stand and watch - doing little.
B12 x3 and syringes cost around 5€ OTC - hopefully it will continue ...
I am well aware that I will have to continue self treating and am well prepared for the battles to come. Reading the horror stories here and on Thyroid UK I know I have a struggle on my hands.
Someone mentioned treating by symptoms -it seems those days are gone - the screen rules as those just in range results are declared normal ! - not a result but an opinion !
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