March 2025  journal

28th March 2025

Chest tightness, is a nuisance, makes breathing problematic. The suspicion, that some more necrosis is occurring ? I also have more lumps of fatty flesh from converted muscle?

Lower legs especially the left side thighs and ankle region is showing swelling and discomfort. Increased D Dimmer levels.

Joints especially the neck, CERVICAL, spine AND arms, SWOLLEN hands PLUS some DEHYDRATION present.

I will know shortly IF my suspicions re my SPINE are correct. I think some of the VERTEBRAE, are FUSED.

If you run your hand down the the spinal column, it feels too smooth, liken to a continuous piece of tube... not the usual ridges etc .. In truth I am not surprised re that.

I drink about 1.5 to 2 LITRES of water a day.. EVERY DAY.. Helps keep my body flushed.
Diuresis appears OK.. Bowels OK.

Stopped taking the Ferroglobin 2.5mls daily.. NOT feeling at all good from that.. after effects including attacking cognitive abiliites; impairment. SERIOUSLY NOT GOOD.

BLOOD PRESSURE.

165/95/78    -   173/91/79   -    167/94/72

‘SYSTOLIC’ is MY accepted NORMAL LEVEL.

A drop below 150 is NOT good for me..

RECOVERY time from, raising the blood pressure SYTOLIC to over 200

then a five to ten minute; rest ? to 180 170 is fast.. MORE THAN ACCEPTABLE.

I DO keep an eye on CARDIO ie ECG testing etc..

Gluteous Maximus muscle mass is problematic especially LEFT thigh. Can leave ripples in the epidermis..

Some major PRIVATE scans and more coming up.. including latest blood results.

Those re the GP (NHS) have not done blood testing, for MONTHS .. just changed one appointment from Monday 31st March to April 14th 2025

The last one before that, was MONTHS ago.

Thankfully, I take my PRIVATE  blood testing SERIOUSLY. THEY clearly DO NOT. Likewise we are going to see some real revelations with some of the tests coming up. OF which I WILL have the results..

Unlike those in the NHS who do tests, scans but do NOT inform me of the results.. ? ________________________________________________________

21st March 2025

Out for bloods et and that almost, destroyed me.
My whole body, was on fire! OUTSIDE and INSIDE.

From the neck across the shoulders, down my arms, hands swollen and painful. SPINE seriously NOT good. Chest tightness, shallow breathing..

I had to take a top up dose which did not help much until a few hours later AND~
 it TOOK HOURS later to recover.

I cannot illustrate, HOW painful, debilitating and crippling that was.
I now have to review the entire mobility issues. SHORT VERY short trips OK but anything more is now OUT.

Let us say, it was soo bad, as to be NAUSEATING
to the point of almost feeling the urge to vomit.

I cannot, do that again. Every time, that happens it causes damage to my body.
Inflammation, swelling and BLOOD PRESSURE - circulation issues.

I have to be brutal re this AND the rule is AND applies, that in future TRAVEL, appointments, scans, bloods and more WILL BE subject to meeting those conditions

Failure on my part, NOT to do this is going to have me end up with a stroke? Immobilised and of course ending up in hospital at ‘their’ mercy.. Uhh NO THANKS.

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14/03/2025

Prednisilone 5mgs ! I am waiting on new bloods to confirm my suspicions that dropping the Prednisilone dosage to 3mgs daily, would result in increased CK levels.
The last test showed an increase. I’m not putting on weight, muscle mass and similar is still poor.
I have changed my diet but again having little or no effect.

I have to be very careful NOT to forget to take that DAILY as all HELL is unleashed. Arthritis, swollen limbs, cervical, thoracic AND lumbar region PAINFUL to CRIPPLING.

If AND I say IF, I can manage to get out (ie bloods /tests etc) I have had one or two occasions, where I have had with so much pain and discomfort, to resort to a nominal TOP UP dose.

BP :        159/94/80   -   149/ 69/ 88      150/64/93 

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13/03/2025 

Full PRIVATE examination, including scans AND bloods. Spine, muscles, body mass. I have some issues remaining re the muscle mass on the LEFT thigh.
The NUMBNESS remains unchanged. (Sponsored).

I have to establish the latest ACCURACY re my test results. The NHS is incapable of this without clear BIAS. I am not going to tolerate any longer personal ego trips, those abusing their positions to reflect THEIR results which in some instance I KNOW are NOT the TRUTH.

The final publication WILL name NAMES. I am fed up, with having issues, they want to play around, with re THEIR interpretations,  their results. WE shall see.

They knew I had issues with a Rheumatologist YET still expected me to go back to her for continuing assessments ? The one who had tried to put me on METHOTREXATE, yes I have ALL of the correspondence and more re that farce.

IT will all be revealed in the book.

ALL calls will now be recorded, all correspondence filed.. into the book.. ALL meetings, sessions AGREED on.. will be FILMED. Plus I will now be taking a WITNESS.

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11/03/2025

From the GP inhouse ‘PRESCRIBING TEAM’..

The latest letter we hold from a specialist commentating on prednisilone was 09/04/2024 and states, the plan, was to reduce, by 1mg ever four weeks.

NOTE inhouse ‘PRESCRIBING TEAM’..

I have informed THE GP, what happens when I reduce the dose. BUT clearly  choosing to regard my views on this as irrelevant.

SO - lets do it shall we. Reduce the dose down to ZERO and as I do assess my bloods and also what happens re swelling, swolllen joins, discomfort and more.

IF my CK levels go rogue ie HIGH, VERY HIGH as I expect they will AND I end up losing muscle mass, mobility and motivity I am going to be taking those issues to a specialist PRIVATELY not one, who is also working, directly or indirectly re the NHS.

and once I have confirmed, the problems, that were, because of the reduced dose I will be taking the GP responsible for the ‘INHOUSE PRESCRIPTION TEAM’ before a medical tribunal PLUS suing for compensation re the pain and suffering, I have had to endure because they choose to ignore the TRUTH.

I will be recording the details, as it progresses religously re blood tests and more.
WEIGHT - BODY MASS - BLOOD PRESSURE - BLOODS including those related to reactions because of swollen / swelling and more.

I will be keeping those details OFF this site until I submit them along with test results and more.

When was the last time my GP took bloods? YET clearly decided to ignore the fact that I have had bloods taken SO I consider them important but my GP does not especially re making a decision on the Steroids?

Referred me to a specialist? AH of course the one who wanted me to take METHOTREXATE which would have crippled my immune system? The one who got irate and annoyed  because her NODDING dog refused to NOD?

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09th March 2025 I have been incredibly lucky to have survived this long BUT if  I rely on those in the UK (NHS) much longer it is going to be a death sentence for me, however much I try hard to find work arounds to keep me alive.
Problems continue AND the attitudes,,that self centred arrogance based on middle or the road, text book or non existent ACCURATE unbiased test results let alone TEST results full stop.. let alone BLOODS  and tests I have to rely on PRIVATELY- regular tests that should be carried out?  ignored by the GP and others..  NHS?
I am now exploring other options, I have no other choice.
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At least 5mgs Prednisilone.
Lower doses have triggered extremes re swollen joints, neck and shoulder discomfort.
Once again I have the added stress of a GP who issues me with a Prescript for Prednisilone 5mgs - 14 days worth..?Calling me a
LIAR re my reasons? for continuing the 5mgs ? When was the last time THEY carried out bloods?