Neurological Systems not Accepted. - Pernicious Anaemi...

Pernicious Anaemia Society

31,973 members23,121 posts

Neurological Systems not Accepted.

WIZARD6787 profile image
7 Replies

In my work as a consultant I often do a "Critical Flaw Study." when a client is considering pursuing a building project.

It is a study to determine what a bureaucratic or judicial board must agree to or ignore or the project will not be approved.

Most consultants just dive in and wait for the critical flaw to become apparent then blame the judicial board or bureaucracy. It is where I start and then I move to a risk assessment of the project being approved. Then and only then do I do a cost analysis of gaining approval. The engineering is pretty much following guidelines if the project is under 100 million.

Note: I have smart and wealthy clients.

I applied this methodology to getting 1 mg injections of hydroxocobalamin other day until symptoms stop improving approved.

Note: I looked at the GP as a bureaucracy and judicial board unto themselves with no oversight or risk to themselves.

If the GP does not accept that the patient is experiencing neurological symptoms that are caused by B12 deficiency than the 1 mg injections of hydroxocobalamin other day until symptoms stop improving will highly likely not be approved.

It seems to me that perhaps the patient sees their neurological symptoms as proven to the GP when the GP does not accept the symptoms exist or are attributable to other causes.

I believe that often the GP sees fatigue as as tired as they were in medical school. Further if they were experiencing fatigue they would not have been able to finish medical school.

That a person might greatly benefit from 1 mg injections of hydroxocobalamin every other day does not satisfy the GP's need to be seen as important and therefore not compelling to the GP.

Written by
WIZARD6787 profile image
WIZARD6787
To view profiles and participate in discussions please or .
Read more about...
7 Replies
Nackapan profile image
Nackapan

Yes some don't .My friend needed a year out!

But they recover!

I've actually given an example to doctors/gps ex colleagues of NHS working hours in the past before regulated as a gauge they would get and understand true fatigue more.

I've witnessed and worked along side doctors who worked back to back shifts who at times had to get alot of support information by other medical staff on duty to make 'the decision'.

I worked 84 hour weeks . Night shifts.

Had one 27 hour 'proper childbirth labour'( for the women gps who'd experienced childbirth)

To try an illustrate fatigue I've been exhausted.

Stressed.

This fatigue with this deficiency yet another shift.

Another name needed ???

Even chronic fatigue over used now

Every coping mechanism does not work in the same way.

Also you don't recover from it but try and manage it .

I'm still unable to get on a holiday as now an extra a challenge rather than the sort of rest to 'recover ' from exhaustion at work or caring for a family member.

They do get the unable to digest food fatigue .

Peppermint water was always available on the wards for digestive issues from shifts worker.

Nausea from exhaustion.

Buts it's transient rather than constantly there hopefully mostly kept in the background as yesrs go on.

Pacing advised bur often does not work.

Following your body listening to it.

If I did that I wouldn't move !!

It's exhausting in itself giving every activity a risk assessment .

Cause and effect different.

Decisions of if I do the food shop.

Can I cook dinner too.

No.

Also not being able to plan much.

One day at a time.

Good to have analogies.

To process ourselves and try and explain.

As I improve its harder .

' Pretending to be 'normal'

Even close people forget .

I have to remember.

Frustrating and boring as can't ever fully relax.

I'm bored dealing with it every day.

Saying less.

So we have to be true to ourselves.

Concealing too much is when depression could happen in my opinion .

A tricky balance .

All a bit 'heavy ' for a Sunday morning .

On the bright side it's not raining and the sun is out.

WIZARD6787 profile image
WIZARD6787 in reply to Nackapan

I agree wholeheartedly. I am also good at functioning fatigue because I'm so used to it.

HeartyGilly profile image
HeartyGilly

So, what is the solution?

WIZARD6787 profile image
WIZARD6787 in reply to HeartyGilly

This was my solution after experiencing much angst regarding my decision. Took me a year to stop looking for competent licenced medicial help.

I decided it was better to put my energy into learning how to self treat as safely as I could and effectively as I could rather than using my energy to try and find a professional who would successfully treat me for B12 defency.

I am lucky in that I do not need any other medical help so I do not need to appease a professional to get other treatment.

It came down to that I saw seeking competent help as planning for likely failure and self treating as likely success.

It is amazing that the option of self treating is possible. It is wrong that I should even have to consider it.

WIZARD6787 profile image
WIZARD6787 in reply to WIZARD6787

After thinking about it for a bit I thought perhaps I should have mentioned that if I thought it was probable that I could find professional help than I would keep looking and would be very pleased if I found any.

Although in Scotland until the end of May the cost of seeking help here would be prohibitive. All my tests were done in the USA. It is not as if I can make an appointment to just check to see if I missed anything.

In the USA very few doctors even prescribe hydroxocobalamin. If you could get a prescription most chemists don't know how to order it and the ones that do will only do so with a prescription and a letter from the insurance company that it will be covered.

RoseFlowerDew profile image
RoseFlowerDew

I have also invested a lot of time and money to both educate and learn to treat myself. I tried year after year to explain symptoms and provide educational materials to the GPs and others which has been ignored or seen as a sign of mental illness in itself (conveniently anything can be labelled as mental health issue all the while ignoring medical causes). In the end with some encouragement I started to SI and am slowly improving with the neurological symptoms.

BUT, this disease is autoimmune based and also has complications beyond neurological symptoms and fatigue. You can probably guess from my recent posts that I have been extremely anxious because of low calcium which points to the fact that PA causes stomach changes and can cause malabsorption.

*Being autoimmune disease it is not uncommon apparently to have other autoimmune conditions with equally subtle symptoms until they aren’t.*

For example I am waiting for blood test results where other autoimmune diseases may possibly be demonstrated and together will push me under the Multiple Autoimmune Syndrome label. I already know that I am APS (probably with SLE and Wegner’s). I have had pleuritic pain for 6 years (apparently associated with SLE). It will be interesting to see if Addisons, parathyroid or thyroid or coeliacs is also present. So that means in addition to brain-spine-neuropathy, lungs, possibly beginnings of kidney, stomach and intestinal changes.

However, PA can mask these other diseases because of pancytopenia (or other immune changes) from lack of B12, vitamin d or other nutrients necessary for having good healthly blood cell creation.

WIZARD6787 profile image
WIZARD6787 in reply to RoseFlowerDew

That sucks. Thank you for sharing. It was helpful.

You may also like...

List of Neurological Symptoms

is a prescription for 1mg Hydroxocobalamin every other day until symptoms improve preferably under a

Are these neurological symptoms?

because I know the treatment for neurological presentation is every other day until it gets......

Neurological Signals

envisioned being symptom free would be. I still do not yet trust that I will remain symptom free....

Neurological symptoms

issues but I don’t know how to describe neurological symptoms or what nerve damage in my back might...

Neurology appointment

and not sure what to expect. I SI weekly but my symptoms seem to be worsening. I have bad anxiety,...