I know many of us have had long journeys to diagnosis or are still trying to be diagnosed. I feel it is important that on this road to explain how difficult the Information Gathering stage can be.
Now many of us can get to a doctor’s appointment and be so utterly fatigued because it has been a mammoth effort to just get ready and attend.
Please prepare for your appointments in advance. The more succinct and precise you are the easier and quicker it is for a Clinician to ‘work out’ what is going on.
So :-
1) Signs and Symptoms - name 4, since when and severity.
2) How they impact your life - socialise, work or leave home.
Family History.
Tell them if your Sister, Mother, Brother etc has Pernicious Anaemia, Hashimoto’s disease or Coeliac disease. By doing this, I strongly believe that you are cutting a Clinician’s work by half.
Sometimes, it honestly feels like we are wading through mud.
We need to know, so we can help you.
Employment History.
It has relevance.
Social History.
One doctor commented on my limping and I told him I was a distance runner. I missed out that I did assault courses and liked to play in mud.
We are trying to obtain a Clinical Picture. What is happening in this 53 year old Man’s body at this moment in time ?
Many years ago, whilst working in a Day Assessment Unit, a woman presented, she was concerned about her baby not moving. So, I examined her, then started monitoring little one. The woman had phoned her husband to tell him and he was en-route. Babe’s heart beat was merrily ticking away. So, reassuring the woman how great she was growing this little one, she started to cry. These were sobs. I asked What was wrong, what could I do to help. She continued sobbing.
So, sitting on the bed, holding her gently I said, Look I cannot help you if you will not tell me. Please let me do my job. So, she explained and we agreed.
In bustled an anxious Dad, I introduced myself. I took him to his smiling wife explaining both Mum and babe were fine. I pointed to the different patterns of heart beat on the monitor. Then told the expectant father, Yesterday, your wife drove into a stationary car. She gave herself a fright with the loud bang. Only her car is damaged. She has been so worried about that she has not been aware of your new baby. Both of them are fine. Are you okay to organise her car being repaired ? The husband with a big grin said, Yes sure.
The moral of the story is inanimate objects can often be fixed. Both parents were utterly relieved that their little was fine. Only I knew how many heartbreaking years they had tried to conceive. P.A./B12D does indeed impact on fertility.
😘
Written by
Narwhal10
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You are a rare gem amongst rough diamonds - I cannot remember the last time I was shown compassion by a clinician. Competence more recently but still rare.
For me, it is about Person Centred Care. So, I adapt my communication skills and style to the person. If a person is quiet and timid then I will notice, lower my voice and speak less. If a person is gregarious, funny then we can have a barrel of laughs.
I know lots of doctors who do not do this. They are just the same with all their patients. It is how you build trust and rapport.
I have the ability to be in severe distress meet with a clinician and need to sleep in the car right after the appointment. This cannot be observed.
The clinician who does not have this ability does not have the ability to know it is possible. That is the problem not my ability to be truthful and articulate.
My guess is lack of humility. The non-understanding that they do not always understand.
Some of us are introverted, so although, we may stand up, walk towards you, smile , greet you and introduce ourselves. We have already undertaken a massive assessment. I will have noticed your eyes, your pallor (colour of skin) how tall you are, the way you walk, you hold yourself. I am looking for signs of pain, abnormal movements. Whether your jaws, your shoulders and your fists are tightly held.
I recognise stressed people so will use an ‘ice breaker’ such as how was your journey or did you have far to travel. I am particularly tactile and although, was unable to undertake my Masters in Hypnotherapy, I have used those techniques for over 20 years. I understand all the principles, knowing that people need to feel Safe and Grounded. So they can relay their physical and emotional health. It is not to catch anybody out, it is to show congruence and a genuine feeling that I care.
Every day is a school day for me and I really wished others had the Wisdom to appreciate how Humility is a must.
You make me giggle. Yes, I’ve done the initial eyeball but then I would do the proper stuff with consent. Pop up on the couch, let us take a proper look at you. The amount of my own purchased tourniquets, pen torches I misplaced. I did keep hold of my sphygmomanometer (blood pressure machine), only because everyone generally used the fancy machines that would break down. I do need a new stethoscope, I will shop around next month. 🤓
‘a massive evaluation of you by eye’, made me giggle.
A man recently suggested we play Chess. I laughed and said, Look, it will get to the stage where I will say, I will mate you in 5. He said, Really ? Nope, I will mate you in 3. Then I put my Game Face on and he realised that I meant Business.
I wear a badge on one of my jackets which states, Silently judging you. The amount of rubbish I have had from Joe Public includes :-
1) You are too young to have an illness.
2) But you look so well. (You did not see me yesterday, nor when I was in had to use a wheelchair nor practically bed-bound.)
3) At least you are pretty. (Gee, thanks, superficial rubbish does not help the invisible nerve pain in my thigh).
4) At least you are young. (Do you know how long it took me to get diagnosed ?).
So, negation AGAIN.
My Game Face as someone who is a super sporty, aggressive in it and wants to win. I go into myself, switch gears, blinkers of horses. It is a big DO NOT DISTURB. The Mental Preparation of a High Achiever.
No doubt that generalisations are made. When I was pregnant with my second child I could feel a lot happening and I could feel the baby’s head bearing down. I was talking at the time and asked if the midwife wound examine me as I was in a public area she said no point as if I was able to talk nothing could be happening. I explained the pain was intense she still refused. I asked a different lady and she did examine me and I was 4cm and my lovely daughter had her arm up over her head presenting with her little hand! Midwife then commented I don’t know how you are not screaming my response was I did say it was painful. We are all different in our response to pain.
I had a frozen shoulder and chose not to have it Manipulated under Anaesthetic as I had unexplained tingling in my fingers. The consultant dismissed me as neurotic. I had my shoulder manipulated with no anaesthetic while awake and that did hurt - made my eyes water - and the chiropractor who did it said I had a very high pain threshold as men had cried when he had attempted similar to them.
I am often judged by my lack of pain - my son and daughter are the same. They rarely report pain so when they do I am on it!!
Second or third opinion is Safe Practice. Go you with second child. Me, I would not have ‘trusted you’. This means that a woman who is carrying 2nd, 3rd babe and more, their cervix can dilate from 0 to 10 cm in 10 minutes. So, yes, you can be ‘cracking on’ very nicely indeed and I only have a chance to get half a glove on.
Pain is subjective. Some women will only perceive mild cramping down their thighs. It can be due to anatomy or baby is in an unusual position. Like you, my perception of pain is bizarre. I can fall asleep whilst being tattooed, waxed and I gave my poor dentist the fright of his life. He administered a local anaesthetic, told me to go in the other room whilst it took effect. I thought, I will have a nap. He found me curled up and thought there was something wrong.
I explained then after my dental work, he asked Any questions ? Yes, do you still give out stickers ? He thought it an odd request. I told him, Well I have been good haven’t I ? 😈 🤪😘
I'd give anything for a high pain threshold. I'd experienced very little physical pain in my 62 years thankfully, but have had several lifetimes' worth of it these past few months. Of course, I'd prefer to be my fit and healthy self and suffer no pain at all.
I am so sorry to read. Now, please correct me, if I am wrong that you have polyneuropathy ? It can be a bit of a devil to manage. The Nervous System is rather complex and the healing stage can be painful. Plus another aspect to consider is inflammation so this is called Neuritis.
Inflammation of nerves can be caused by autoimmune diseases, so P.A., Hashimoto’s disease or Coeliac Disease as just examples. Plus, other deficiencies - B1, B3. So, it is may also be about bringing that inflammation down. Diet, reducing stress, so not overdoing physical and emotional stuff. Plus, if suitable for you but some may not tolerate it is Ginger, Turmeric both edible but not if you cannot stand the stuff. Plus , Quercetin :-
No need to read it all but just showing it is from a Scientific Journal and published 2022. First paragraph : -
‘Quercetin has anti-oxidative, anti-inflammatory, anti-proliferative, anti-carcinogenic, anti-diabetic, and anti-viral properties. The molecule is lipophilic and can easily cross the BBB (Blood-Brain Barrier) and hence protects from neurodegenerative diseases.’
Polyneuropathy and a whole lot more symptoms since iron infusion. A complex condition has developed that's almost impossible to explain. Been trying to work on reducing inflammation, tried Benfotiamine & ALA and a few other supplements, not yet tried quercetin. Desperation has led to my starting gabapentin this week. Don't think that's the solution either, early days yet.
Hmmm, a jigsaw puzzle indeed. Polyneuropathy and a whole lot more symptoms since iron infusion.
My little brain is wondering why and as of yet I have come up with nothing, sorry. More reading for Fishface. Mixteca, I have found that experimenting does help. Several of us take Lion’s Mane.
I thought it was fairly straightforward initially, a result of B12D & treatment when iron & folate stores were too low.
That all changed a month after my infusion, when what seemed to be 'reversing out' symptoms, the B12 rebooting itself, took on a nastier, scarier and more debilitating course. I expected to get back to recovering with repleted iron stores but the opposite happened. A "diagnostic dilemma", to quote my clueless GP.
Overall health was then compromised by newly emerging problems triggered by prolonged illness/being housebound and weight-loss (fat & muscle mass), so everything became much more complicated and more challenging to treat - a vicious, downward spiral.
Yes, seen that mentioned and considering that too. Thanks for links.
I noted : ‘Plant families such as Solanaceae, Asteraceae, Passifloraceae, and Rhamnaceae are rich in quercetin content.’
Solanaceae is the group of ‘nightshade’ vegetables which many seem to believe are pro inflammatory- tomatoes, potatoes, bell peppers etc and a key factor in the development of leaky gut. Some people avoid them completely.
I have not experienced any problems with these foods and eat as many of them as I can. It’s good to know they are a source of quercetin.
Well, my journey has been very character building. I have been a very patient patient. I am extremely subtle and lots of male doctors have absolutely idea that I am making fun of them.
So, I may say, Oh yes, an SMS and point to my phone. They wrongly believe that I mean a ‘text’ but I have diverted their attention with my body language. I am saying Small Man Syndrome, the Napoleon Complex. A SMART phone can be used as a recording device. It is always best to obtain consent. An explanation can be given of suffering from poor cognitive function and memory. No clinician should have anything to hide.
In fact, sometimes I am very aware that I speak far too fast because I have a huge amount of information in my head. So, am quite happy to
1) Clarify,
2) Write stuff down
3) Signpost to Charities so people can receive emotional support, know they are not alone in their journey and talk to others in similar circumstances.
4) Or be recorded. Bringing life into the world is a very Happy event. So, you kinda feature in videos or photos even if you look like you have been dragged through a hedge backwards but the cheesy grin is there.
What is the point of being in a Health Care Professional, if you do not
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Don't Know Whether to Laugh or Cry
Fatigue questionnaire
Various B12D/PA resources 
