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December 2023
Coming up... a ‘year end’ review AND updates on current health and well being PLUS !
When it comes to GP’s / NHS consultants, medical practices re health and well being ? IT is NOT what they tell you but what they DON’T tell you that IS and can be seriously bad for YOU their patient !! I continue to be shocked at what has taken place over the last 12 months.
The almost nauseating god like attitudes of some egotistical, self righteous against those who genuinely deliver and YES thankfully in the MAJORITY...
Sometimes what I have done that I consider was in my best interests?? I am terrified that given some good results; how I could have ended up ?? had I left everything to them?
Thanks to those such as Johns Hopkins USA.. for their invaluable research AND insight into ASPECTS of my health issues.. not forgetting others who have helped me in many ways with advice and suggestions PROVEN, tried and tested RESULTS etc
Lets not be deluded ... I am DYING... how long I can put off the ‘WHEN’ is the current fight in progress..
HMGCR (3-hydroxy-3-methylglutaryl-coenzyme A reductase) is a key enzyme in the production of cholesterol. Patients who have anti-HMGCR antibodies and use statin medications to control high cholesterol may develop statin-induced necrotizing myopathy, which causes significant muscle weakness that
does not resolve with discontinuation of the statin!!
Sat 30th Dec 2023
Coming up... a ‘year end’ review AND updates on current health and well being PLUS !
I have managed to reduce the ‘death rattle’ re my throat and chest to a LOW level. Cough has also been far more intermittent. Manageable. HOWEVER the wheeze and overall discomfort remains. Whatever caused that damage to my system has left thoracic (intercostal ribs etc) compromised / DAMAGED.
Interesting to note the blood pressure readings !! SYSTOLIC and DIASTOLIC appear to be settling down WITHOUT the usual PULSE rate variances.
NORMALLY? ... Pulse rate HIGH, DIASTOLIC and SYSTOLIC : LOW
Pulse rate LOW DIASTOLIC and SYSTOLIC : HIGH!!
Chronic FATIGUE has been affecting concentration AND mobility / motivity.
I’m wondering IF that has been made worse with these blood pressure levels?
Neck / arms / hands : Hands swollen. puffy - clicky and overall; compromised.
Legs : both lower limbs Statin-induced necrotizing myopathy ,gluteus muscle / tisue hardening. Tightness the muscle VERY hard to any ie finger pressure applied. NUMBNESS is now 40 - 50% and INCREASING.
Some ‘markings’ ie patches appearing on certain areas of skin. NOT the same as the Dermotomyositis !! 3
8am Sat 30th Dec 2023
blood pressure readings : 179/112/96 - 175/116/97
5am Sat 30th Dec 2023
blood pressure readings : 159/94/107 - 142/92/110 - 157/93/104
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Wed 27th Dec 2023
4pm Wed 27th Dec 2023
blood pressure readings : 171/96/119 - 176/99/119
7am Wed 27th Dec 2023
blood pressure readings : 138/92/96 - 139/86/96 - 140/83/99
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Sun 24th Dec 2023
4pm Sun 24th Dec 2023
blood pressure readings : 164/89/103 - 166/85/104
7am Sun 24th Dec 2023
blood pressure readings : 187/107/97 - 179/105/102
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Fri 22nd Dec 2023
Notes:
Sinuses are being problematic., All of the usual ailments in play.
Will see how the week end progresses. Some real discomfort AND pain from the shoulders to the arms /hands. Hands swollen.
10pm Fri 22nd Dec 2023
blood pressure readings : 142/78/86 - 145/79/87
7am Fri 22nd Dec 2023
blood pressure readings : 174/104/91 - 172/104/88
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Thur 21st Dec 2023 Thur 21st Dec 2023
Notes: Minor urine ‘incontinence’... I have been suspicious of some weakness re the bladder and bowel?? This though it might be a ‘one off’ incidence was still apparent. I might have to start using incontinence pads et...
Gastro intestinal discomfort means I am using antacid etc remedies more often.
7am Thur 21st Dec 2023
blood pressure readings : 163/86/95 - 160/89/97
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Wed 20th Dec 2023 Wed 20th Dec 2023
Notes: Minor urine ‘incontinence’... I have been suspicious of some weakness re the bladder and bowel?? This though it might be a ‘one off’ incidence was still apparent. I might have to start using incontinence pads et...
Gastro intestinal discomfort means I am using antacid etc remedies more often.
10pm Wed 20th Dec 2023blood pressure readings :
blood pressure readings : 177/113/93 - 192/107/93
10am Wed 20th Dec 2023
blood pressure readings : 163/89/90 - 140/89/101 - 153/93/97
7am Wed 20th Dec 2023
blood pressure readings : 186/115/86 - 191/107/86
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Tues19th Dec 2023 Tues19th Dec 2023
Lymph glands aremain swollen. BLOOD testing ???
Appears that has now been DISCONTINUED? by GP ??
10pm Tues19th Dec 2023
blood pressure readings : 167/95/92 - 168/94/94
10am Tues19th Dec 2023
blood pressure readings : 152/91/85 - 150/90/88
7am Tues19th Dec 2023
blood pressure readings : 157/95/89 - 160/90/91
Sars antigen test NEGATIVE
Ultrasound scan Axilla (both) Monday 18th : Cancelled by NHS
?? Fine needle aspiration?? Management of : current health issues .. suggested to GP??
Appears this has been ignored. I wonder why.. or do I?? Truth is.. I have a VERY nasty sense that underlying issues are due to a CANCER of sorts.. ?? We shall see though I suspect it will only be revealed at the post mortem / autopsy.
Doctors may recommend fine needle aspiration for areas such as:
cysts (fluid-filled lumps)
nodules or masses (solid lumps)
enlarged lymph nodes
Without a biopsy, it's usually hard for a doctor to confirm what these abnormal areas contain. And you may not know if they are a threat to your health.
The most common reason to get a fine needle aspiration is to test for cancer.
Coming up... Let’s expand investigations etc into the ENDOCRINE system??
(The endocrine system is a network of glands and organs that produce and release hormones to control and regulate many bodily functions.) I do have Hypothyrodism.. treated with Levythyroxine 25mgs OR 50mgs (alternate daily dose)
I also have swollen LYMPH glands!!!
Fri 15th Dec 2023
To reiterate : Ongoing issues AND NOT including pre existing medical / physical issues as KNOWN as FACTS.
Med changes : PREDNISILONE now at 15mgs (3 x 5mgs) daily.
Fight going on re BLOOD PRESSURE figures.. HIGH!! MOBILITY and MOTIVITY are reasonably OK. Some WOBBLE that is sporadic and of MINOR interest HOWEVER! Overall CHRONIC FATIGUE is still a nuisance. The Dermotomyositis is also VERY visual re the lower region. Luckily at the moment it seems to be prevalent ONLY in that region.
Sjögren's syndrome MORE here throat remains affected by this. FACT. This is ongoing and NOT intermittent ! I suspect it may also be a reason directly or indirectly, for my sinus issues.
Hands are swollen and though NOT as painful as I have encountered in the past; still a debilitating nuisance that does affect MOTIVITY.
I’ve managed to reduce the after effects of the howl and growl from the ongoing ‘death rattle’. The itch in the back of my throat that can irritate it enough to force a coughing fit on me... eased a little with the cough mixture AND lozenges. HOWEVER I’m getting some side effects I ssuspect as I am having to be careful due to some ‘light headedness’. A definite IF I am not careful.. wobble. THAT of course affects my mobility and motivity.
Chest wise.. getting worse re its destruction in progress... tightness, difficulty in breathing.. painful intercostal ribs AND rib cage made much much worse when coughing! Some sputum now being generated.
Sinuses are playing up with more tightness AND restricted airway ...
LOWER limbs.. both L and R legs are swollen AND overall something going on beneath the surface re muscle and ?? A very apparent hardness of muscles in certain areas? Probable tighness with muscle and tissue damage.
The ‘lesion’ area AND the surrounding tissue is a FACT... due to Dermotomyositis
10am Fri 15th Dec 2023
blood pressure readings : 178/96/103 - 181/98/104
7am Fri 15th Dec 2023
blood pressure readings : 171/107/91 - 191/105/93
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Understanding some TRUTHS re medical care in the UK CLICK HERE
Tues 12th Dec 2023
10pm
blood pressure readings : 197/107/96 - 182/97/100 - 177/100/99
10am
blood pressure readings : 151/95/108 - 158/94/109
7am
blood pressure readings : 178/115/90 - 171/106/91
5am Booster dose of Ramipril 5mgs and Doxazosin 2mgs
blood pressure readings : 206/120/93 - 208/114/96
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Fri 8th Dec 2023
Its been a manic week PLUS ! since the 28th.
I did a train journey to Oxford where I met up with someone re ‘family’. for the trip north. Their presence needed for the usual disposal of certain artefacts gathered over the previous decades. Yes of course the usual ‘vultures’ in the mix when it comes to someone dying.. seen that, been there; avoided acting like a thief in the night nay VULTURE as I have seen seizing every opportunity to lie, cheat, connive and scheme to steal, take and (legally or otherwise); acqure. Needless to say the bulk of my assets went to various charities.
One might say, I am being a little presumptious in my activities to ‘empty the cupboard’ hmm barren is about right BUT...
Lets NOT be blind to the truth. I am DYING.. What I have experienced over the last few weeks is this increasing howl and growl from my thoracic region with a manic COUGH that delivers not only a rasping COUGH but crippling pain around the thoracic region especially engaging the intercostal muscles AND rib cage.
I have NOW managed to use a COUGH SUPPRESSANT... mostly for night use as otherwise attempting to sleep??? During the daytime I use a milder cough syrup.
Lozenges and similar to attempt to soothe my throat and stop it becoming raw from the rasp, howl and growl. Ah yes the death ‘RATTLE’. (The death rattle is a sign that a person is approaching death. With each breath, a person may make a moaning, snoring, or rattling sound.) My respiratory system is being attacked, my digestive system also problematic. I think I am going to have to audio record this ... maybe even post it..
Of course, all of the other medical, physical issues remain mostly unchanged. I have become increasingly aware of the lower body when it comes to the neural myopathy / neuralgia where the necrosis is actively killing off what I suspect are nerve axions etc that was about 30-40%?? now closer to 40-50% ! Upper torso, spine, shoulders, neck, arms, hands now about 30-40%.
The CRAMP in my legs can be a real nightmare. Slightest twist of the leg/s can generate a really nasty ‘muscular’ spasm/s. General pain and discomfort are nothing unusual and that creates mobility AND motivity issues.
This HAS been noticed by others around me AND agreement is that my COUGHING, my breathlessness has definitely gotten WORSE. (Just ask my neighbours who must be hearing that death rattle with all of the howls and growls it generates. )
Questions some might be asking.. Let’s do a questions and answers health and well being ‘update’.
OVERALL..
The THORACIC area is being targeted probably by the rise in CK levels FACT.
Muscle wasting and the attack on my LUNGS is I suspect leaving me with reduced oxygen absorption?
That is what is causing the howl and growl.. the DEATH RATTLE.
Whilst I am getting SOME relief from the cough suppressant etc and and .. it is SUPPRESSING and NOT removing NOR stopping the coninued effects from the NECROSIS taking place. I want to emphasize this.. the NECROSIS taking place.
Cellular destruction re muscles, tissues and as for the internal organs??? NO desire to even entertain the thoughts re them.. WHEN it happens..???
Readers can catch up on what MEDICATION I am currently taking HERE
This does not include the COUGH suppressant et which has Dextromethorphan Hydrobromide. Dual action ‘dry cough’ med.
Luckily one might say..OR? my cognitive functions appear (at this time) OK. Being more than aware however of what is taking place ???
Bowels : OK Diuresis OK Eating / drinking ?: Some minor issues re SWALLOWING the DYSPHAGIA remains as well as Sjögren's syndrome MORE here
GONE ?
The cold sweats, rapid drop in body tempeature that was plaqing me for months ... that took place after eating a meal etc ? Changes in some of the MEDICATION?? might be the reason for that.
Body temperature has increased in some areas that were noticeably COLD to the touch ... HOWEVER in some of those areas there are still ‘cold patches’.
REMAINING problematic :
The damage to the GLUTEUS MAXIMUS muscles LOWER BODY.. especially the LEFT THIGH area has remained constant. Discomfort, pain, coldness AND numbness.
Where the ‘lesion; was to be found?? PUNCH biopsy performed and came back as NOT MALIGNANT.. however! The ‘scab’ that formed over 6 months even afte the biopsy REMAINED albeit smaller AND butchered. !! THAT should NOT have been as was once again examined and noted as being THERE!!
Oh and just to add more in the mix re this .. DERMATITIS with what I originally pointed out that had occurred as a rash / rough skin area within the same area and around / close to what is NOW compromised ...and VERY visually let alone PHYSICALLY apparent. Dermotomyositis
Dermatology ahh... yes... on further examinations re those notorious ARMPITS ...
Remember I commented on there being NODES.. LYMPH NODES that had thanks to the METHOTREXATE.. compromised ?? Hmn well this time oh yes.. MORE and I mean MORE !! Now under investigation but damaged LYMPH NODES ?? NOT GOOD!
Inner thighs BOTH L and R: Weeping ulcerations.. being currently DRIED out and treated. Nasty smell to these... possibly fungal.. Drying out is important before applying anti fungal creams.. etc.. I have also cream for the Dermotomyositis problematic skin area.
OK More to follow...
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