|
Journal pages for February 2024
Necrotizing Myopathy Click here
______________________________________________________
Friday 23rd February 2024
I’ve NOT had a good week. Some underlying issues are making themselves known with me suffering a lot of discomfort which may be partly due to the heavy reduction in the Prednisolone to 2.5mgs per day.. A VERY VERY low steroid dose.
Overall my health and well being has been once again compromised by those who it would appear are incapable of doing what they should be doing even when I have gone out of my way to comply with their requests. What however is the most insulting is how they appear to think that they don’t have to be accountable for their actions (or lack of) re for instance..
Update re blood test takin 14th Feb 2024
I hae NOT received the results for the following, despite my concerns AND asking those who should have carried out the tests .. it seems the GP / surgery who took the bloods are NOT giving me an explanaition nor it would seem, being accountable. Is there any surprises there?? NO.
- • Haematocrit
- • Mean Cell Haemoglobin (MCH)
- • Mean Cell Haemoglobin Concentration (MCHC)
- • Red Blood Cell Mean Cell Volume (MCV)
- • Red Blood Cell Count
- • Basophil Count
- • Eosinophil Count
- • Lymphocyte Count
- • Monocyte Count
- • Neutrophil Count
- • White Blood Cell Count
- • Platelet Count
6am
blood pressure readings : 158/88/96 - 149/83/98
_______________________________________________________________________________________________
Wed 21st February 2024
I am currently waiting on the COMPLETE BLOOD TEST results (14th Feb 2024)
I have SOME but not ALL of the blood test results..I expect to be able to see or know about the currently missing test results.. within the next few days..
I am getting more and more aware of a lot of discomfort that is NOT GOOD... MORE to follow..
PREDNISILONE 2.5mgs per day
Nausea... making eating and drinking problematic. I would not be surprised at some sudden vomiting from ie moving around etc..?! Might be good that I have limited appetite and enthusiasm for foods and liquids though I suspect it will not stop the nausea and or the sudden urge to vomit. I’m going to have to carefully watch my meds intake...
Lower ankles BOTH legs are much weaker.. causing some instability when standing up / moving around.
NECK, shoulders not good. Adding to the upper body spine issues. A contributory factor re the NAUSEA!
Peripheral body temperature is compromised by COLDNESS especially re the hands ! Ambient room temperature about 18 C -
Body tenp: Palms : 76.9F FH : 93.1F Under Tongue... 97.6F Thighs L:80.5F - R: 80.3F
Overall weakness re ‘motivation’ ie rising from a chair etc moving around and involving MOBILITY.
Chest area especially rib cage , intercostal ribs and tissue / muscles ? reemains problematic.
Body temperature is being affected. Coldness of tissue etc is slow to regain warmth. Circulation??
Neck / shoulders / spine have sfiffness, creaking and cunching issues.
Hands/fingers are also giving me problems.
6am
blood pressure readings : 175/102/103 - 177/97/106
1am :
blood pressure readings : 160/100/91 - 158/102/96
______________________________________
Mon 19th February 2024
I am currently waiting on the BLOOD TEST results (14th Feb 2024)
PREDNISILONE 2.5mgs per day
Overall weakness re ‘motivation’ ie rising from a chair etc moving around and involving MOBILITY.
Chest area especially rib cage , intercostal ribs and tissue / muscles ? reemains problematic.
Body temperature is being affected. Coldness of tissue etc is slow to regain warmth. Circulation??
Neck / shoulders / spine have sfiffness, creaking and cunching issues.
Hands/fingers are also giving me problems.
6am
blood pressure readings : 167/97/81 - 158/104/81
1am :
blood pressure readings : 163/86/106 - 167/85/108
_______________________________________________________________________________________________
Thurs 15th February 2024
Sars antigen test NEGATIVE
PREDNISILONE 5mgs per day
Upper body is becoming almost a solid lump... ??? Something is definately going on ...
Chesty, wheezy and little change re that... Overall, NOT good...
4pm
blood pressure readings : 131/86/97 - 131/84/99
AM :
blood pressure readings : 160/105/94 - 159/107/100
Wed 14th February 2024
Comprehensive blood testing. Will be interesting to see the results!
______________________________________________________________________________________________
Mon 13th February 2024
PREDNISILONE 5mgs (1 tablet per day) Reduces to 2.5mgs from 19th Feb ,
AM :
blood pressure readings : 153/86/96 - 146/95/96
Some chronic fatigue kicking in. Very lethargic !
Neck stiffness including (especially when turning my head left or right, up or down) some ‘clicking and crunching’ not good! Radiates across the shoulders re overall discomfort.
Chest area is ‘tight’. Intercostal regon appears to be much firmer to the touch .. some hardening of the muscles / rib cage connecting tssue??
Problems with swallowing are becoming a regular issue. I have to be very careful NOT to when ie swallowing water, that it does not end up re the trachea!! I don’t like ending up with a disturbing ‘coughing fit’... Slight soreness to the back of the throat.
Atelectasis at R Lung base.’ is continuing to be apparent. The irritiation is a real nuisance as the production of some phlegm albeit small amounts being coughed up / spat out (I’m keeping these to see if any distinct colour changes take place etc OR blood et.)
I’m trying ot tie up the correlation between my sinuses and how I am forced to breathe through my mouth when they close off??
I now have to hand a ‘Salamol’ inhaler with tube etc.. 100 MICROGRAMS dose.
I’ll post more details re that ...
Hands remain puffy and swollen.
I am now carefully monitoring my’heath and well being’ as I gradually reduce the steroids .. to zero.
Bloods on the 15th Feb will be extremely interesting re results.
_________________________________________________________________________________________________
Sat 11th February 2024
Some chronic fatigue kicking in. Very lethargic !
Neck stiffness including (especially when turning my head left or right, up or down) some ‘clicking and crunching’ not good! Radiates across the shoulders re overall discomfort.
PM :
blood pressure readings : 149/84/90 - 144/97/93
Chest area is ‘tight’. Intercostal regon appears to be much firmer to the touch .. some hardening of the muscles / rib cage connecting tssue??
Problems with swallowing are becoming a regular issue. I have to be very careful NOT to when ie swallowing water, that it does not end up re the trachea!! I don’t like ending up with a disturbing ‘coughing fit’... Slight soreness to the back of the throat.
Atelectasis at R Lung base.’ is continuing to be apparent. The irritiation is a real nuisance as the production of some phlegm albeit small amounts being coughed up / spat out (I’m keeping these to see if any distinct colour changes take place etc OR blood et.)
I’m trying ot tie up the correlation between my sinuses and how I am forced to breathe through my mouth when they close off??
I now have to hand a ‘Salamol’ inhaler with tube etc.. 100 MICROGRAMS dose.
I’ll post more details re that ...
Hands remain puffy and swollen.
PREDNISILONE 7.5mgs per day 5mgs from 12th Feb
I am now carefully monitoring my’heath and well being’ as I gradually reduce the steroids .. to zero.
Bloods on the 15th Feb will be extremely interesting re results.
AM
- blood pressure readings : 169/104/99 - 173/103/100
_______________________________________________________________________________________________
Thurs 9th February 2024
Wheezy cough to clear the phlegm from the back of my throat. Builds up on its own. NO blood etc BUT it is persistent AND I would say that it has definitely become a regular issue.
PREDNISILONE 7.5mgs per day (Monday 5th Feb).
then 5mgs from 12th Feb
I am now carefully monitoring my’heath and well being’ as I gradually reduce the steroids .. to zero.
Bloods on the 15th Feb will be extremely interesting re results.
AM Blood glucose 5.6mmol/l
- blood pressure readings : 165/98/93 - 166/93/87
Overall tightness across the intercostal ribs,(I suspect some ‘metastasizing’ of some of the tissue is taking place) unpleasant disposition re breathing but also swallowing is being affected. .
If I cough, the chest region in general becomes painful; the ‘tightness’ is very apparent. .
_____________________________________________________________________________________________
Tues 7th February 2024
PREDNISILONE 7.5mgs per day (Monday 5th Feb).
then 5mgs from 12th Feb
I am now carefully monitoring my’heath and well being’ as I gradually reduce the steroids .. to zero.
Bloods on the 15th Feb will be extremely interesting re results.
9am
- blood pressure readings : 169/97/83 - 167/107/90
Overall tightness across the intercostal ribs,(I suspect some ‘metastasizing’ of some of the tissue is taking place) unpleasant disposition re breathing but also swallowing is being affected. .
If I cough, the chest region in general becomes painful; the ‘tightness’ is very apparent. .
________________________________________________________________________________________________
Mon 5th February 2024
Am now on a reducing PREDNISILONE amount over the next THREE weeks :
From 2 tabs 10mgs per day to 7.5mgs per day (Monday 5th Feb).
then 5mgs from 12th Feb
Hands swollen, some puffiness. Knuckles crunch.
Lower legs / ankles some stiffness and discomfort.
8am
- blood pressure readings : 159/90/103 - 157/91/103
_______________________________________________________________________________________
Former chest x-ray in Oct 2023
Suggested follow up in 6 weeks due to ‘new minor
Atelectasis at R Lung base.’
Patient NOT MADEaware of this result. 6 week follow up? NO.
Latest X-ray result Jan 15th 2024 showing
Atelectasis at R Lung base.
Some difficulty in breathing but also the wheeze AND irritation in the throat is creating an almost continuous cough. Some relief using the cough suppressant medicine especially at night etc BUT!
NOW have Salbutamol inhaler (Salamol) will update re the use of this et Bronchodilator (a short-acting beta2 agonist)
I’m experiencing momentary closing of the air intake via the nostrils / sinues closing down etc .. being forced to breathe through my mouth ?? ! It can be quite alarming when it happens! Dryness within sinuses AND tightness..
Contra indicators..APPLIES to me:
If you have heart or blood vessel problems, or if you have an irregular heartbeat. YES
If you have high blood pressure. YES
If you have ever had an allergic reaction to a medicine. YES
Sat 3rd February 2024
9pm
- blood pressure readings : 169/91/103 - 165/89/104
Definite wheeze persists. Coughing remains a nuisance. Doping with antacids seems to have some efect in reducing the constant gasdtro intestinal dicomfort. It is definitely going to take some time to restore the damaged tissue etc. At least I have determined the core area that has to be addressed rather than stumbling around in the dark!
Am now on a reducing PREDNISILONE amount over the next THREE weeks :
From 2 tabs 10mgs per day to 7.5mgs per day (Monday 5th Feb).
then 5mgs from 12th Feb
Finally NONE re the PREDNISILONE. Let’s see how things progress .. IF my CK levels are NOT an issue then I don’t need the Prednisilone ?? Thus I also won’t need to take the METHOTREXATE... my Auto Immune system is seriously problematic... except of course... the FACT that it is not just muscle MYOPATHY / NEURALGIA but NECROSIS taking place ??? The overall NUMBNESS has increased LOWER regions up to 50% UPPER regions... 40 - 50%
Have they continued to do ongoing tests re this?? NO... For some fighting to preserve THEIR VERSION OF ... is hard enough when my symptoms, test results and ??? keep proving me right and them WRONG??
_______________________________________________________________________________________________
Wed 1st February 2024
Into another month and still counting my luck so far at staying alive let alone able to stand let alone walk! Let’s see how things progress..
8am
- blood pressure readings : 132/71/94 - 138/74/92
Definite wheeze persists. Coughing remains a nuisance. Doping with antacids seems to have some efect in reducing the constant gasdtro intestinal dicomfort. It is definitely going to take some time to restore the damaged tissue etc. At least I have determined the core area that has to be addressed rather than stumbling around in the dark!
Am now on a reducing PREDNISILONE amount over the next THREE weeks :
From 2 tabs 10mgs per day to 1 tab per day.
Finally NONE re the PREDNISILONE. Let’s see how things progress .. IF my CK levels are NOT an issue then I don’t need the Prednisilone ?? Thus I also won’t need to take the METHOTREXATE... my Auto Immune system is seriously problematic... except of course... the FACT that it is not just muscle MYOPATHY / NEURALGIA but NECROSIS taking place ??? The overall NUMBNESS has increased LOWER regions up to 50% UPPER regions... 40 - 50%
Have they continued to do ongoing tests re this?? NO... For some fighting to preserve THEIR VERSION OF ... is hard enough when my symptoms, test results and ??? keep proving me right and them WRONG??
|
