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Necrotizing Myopathy Click here
Wed 27th March 2024
Previous night not so good. Chest area problematic. Tightness across the thoracic, difficulties re breathing. Used inhaler with some relief but the discomfort is stlll apparent creating additional issues re trying to sleep.
Prednisolone now 7mgs daily. It will be interesting to see how the next blood test results are especially re the CK levels etc.
Hands are swollen with a lot of discomfort. Clicky, stiff. Motor neurone responses can be annoying when ie attempting to pick up an object? Knocking an item over?
Body rash, weals remain with skin discoloration/patches; thighs, arms, waist, anskles.
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Mon 25th March 2024
Sars test NEGATIVE.
Accepting new challenges with breathing, exertion, motivity and moblity.
The sudden onset of tightenng of the airway causing me to gasp for air remains at times terrifying. I am now using an inhaler to attempt some relief from this.
Overall weakiness persists. Coordination and motor neurone responses can result in my hands being unable to grasp properly certain items OR knocking something over from ie a sudden twitch or spasm.
Wearing support leg wear from feet up to the knee appears to have reduced some of the swelling on both legs around ie the calf muscles.
I am noticing an itchy rash.Arms/ legs. Red spots, raised skin weals that I am being sorely tempted to scratch causing the weals to bleed. NOT good considering that I am taking anticoagulants! I’ll have to start using a cream to attempt to stop this. Bathing the areas with salt washes.
I am changing my Prednisilone increasing it to 7mgs daily. To attempt to conbat a slight rise in the CK levels. (147)
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Fri 22nd March 2024
I’ve NOT had a good week. Some underlying issues are making themselves known with me suffering a lot of discomfort, breathlessness, breathing diffiuclties mean I now have to use an inhaler.
Overalll weakness continues.
- blood pressure readings : 176/102/96 - 182/107/102
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- Thurs 29th February 2024
- Blood glucose level 7.3mmol/l Will be keeping a close watch on this... this is the highest I have recorded re early morning .. It worries me that the PANCREAS could be having problems. I’m NOT showing glucose in my urine BUT .. I will still get my urine lab tested.. and of course see what my blood levels show relevant to blood gl;ucose etc..
- Mon 25th March 2024
Today I am having bloods taken re correction of missing blood results that were taken on the 14th Feb. Apparently one of the collected samples failed due to the blood being CLOTTED...An example of why I don’t like bloods being taken by a GP etc and then trasferred to wherever for testing!!
Blood testing will also include several other relevant tests.. more re this later..
NOT to say that bloods taken at the hospital etc don’t have problems re being processed etc.. been there, got the tee shirt is about right re that!
HOWEVER.. it’s important re the results from theses tests to give me and the consultants etc a good look at what is going on especially IF I decide to do the METHOTREXATE.
Let’s recap on what that does.. it basically cancels out the immune system especially re how the immune system responds to any infection et et.
I have SWOLLEN glands and the reason is relative to what is happening within my body as they are there because of an INFECTION/s ??
Let’s see how the blood tests are and I will make my decision from there.
Currently I am on 5mgs Prednisolone and let’s NOT get over excited re that .. it is a MINOR dose... almost irrelevant..
BUT it will certainly be interesting to see what transpires re me taking the METHOTREXATE... More to come on this!!
Generally NOT particularly good. (health and well being).
As voewers are also aware; the blood test results were ‘bodged’ ie INCOMPLETE;mising a VITAL part of the blood test (as shown below)
That should be sorted within the next ten days.. I have a few visits to the local hospital being addressed and I suspect the bloods will be taken when I am there.
NOT at the local GP.
The overall ‘attitude’ on the part of the GP scenario sucks is an understatement.
Sinuses, congestion, sneezing, wheezing and having to blow my nose several times and certainly far more often than before ... ?
Body temperature is also NOT good... Palms reading as low as 96.7F with hands being much COLDER than normal.. I am acutely aware of the issues re my hands being swollen, coldeer! Impaired blood circulation ???
I’ve now changed my PREDNISOLONE to 5mgs per day
(I am NOT happy re the LOWER dose of 2.5mgs )
Some minor FRESH blood is apparent. NOT of great concern BUT of course being on anti coagulants (Eliquis 5mgs x TWICE DAILY) a need arises to keep an eye on that, produced from blowing my nose..
6pm
blood pressure readings : 168/103/108 - 171/98/106
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Mon 18th March 2024
*Some difficulty in SWALLOWING caused me to CHOKE with me gasping for breath. SERIOUSLY NOT GOOD moment as I struggled to regain BREATHING. Throat is NOT clearing properly, airway compromised. I can’t even describe the FEAR this creates.
As I have already pointed out this is due to Sjφgren'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.
Cardiac ‘arythmia’ very apparent with randomly missing beats. The IRREGULAR heart rate is now at times VERY apparent. I think I may need to look at having an ECG ?
Little has changed re the previous WEEK.
Some skin discoloration and patches apart from dermatological issues re random spots that end up bleeding. I’m being very careful re these because I am on an anti coagulant!
My main area re the Dermapolymyositis is still showing damage to skin.
I’m having to be careful as my MOBILITY is continuing to be compromised. Feeling a little weaker and chest issues with the intercostal ribs and chest area giving me a lot of tightness and discomfort.
Wheeze remains present. I’ve managed to decrease the ‘death rattle’ but ! Hands are swollen, some light pain.
Neck and shoulders re pain and discomfort.
Prednisilone at 5mgs DAILY
9am blood pressure readings : 167/104/94 - 168/99/99
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Tues 12th March 2024
I’m having to be careful as my MOBILITY is continuing to be compromised. Feeling a little weaker and chest issues with the intercostal ribs and chest area giving me a lot of tightness and discomfort.
Wheeze remains present. I’ve managed to decrease the ‘death rattle’ but ! Hands are swollen, some light pain.
Neck and shoulders re pain and discomfort.
Prednisilone at 5mgs DAILY
9am blood pressure readings : 155/91/105 - 159/89/106
5am blood pressure readings : 176/103/91 - 175/104/92
Thurs 29th Feb 2024 BLOOD Results ??
- Haematocrit 0.330 LOW
- Mean Cell Haemoglobin (MCH) 29.6
- Mean Cell Haemoglobin Concentration (MCHC)
- Red Blood Cell Mean Cell Volume (MCV) 87.2
- Red Blood Cell Count 3.78 LOW
- Basophil Count 0.2 HIGH
- Eosinophil Count 0.2
- Lymphocyte Count 2.8
- Monocyte Count 0.6
- Neutrophil Count 7.9 HIGH
- White Blood Cell Count 11.7 HIGH
- Platelet Count 255
Potassium serum 4.0
Sodium level serum 141
CREATININE CK level 127 * HIGH {Prev 47}
Neutriphil 7.9 HIGH
C-reative protein CRP 13 HIGH
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Fri 8th March 2024
When you still have those so called professionals who are quick to make decisions regarding your health and well being based on , lack of critical ie BLOOD results... and so much more.. it is no surprise to me that given my actual health and well being vs their FAILURE to deliver anything but SPECULATE? ASSUMPTIONS. In fact it is truly shocking how far off the truth in so many respects certain as said, so called medical professionals are. More CLICK HERE
blood pressure readings : 155/101/93 - 166/99/104
Latest CRITICAL where are the blood results??
Tues 5th March 2024? Results??
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Tues 5th March 2024
Necrotizing Myopathy Click here
- Blood glucose level 5.7mmol/l
- Sars anti gen test NEGATIVE (4th Mar 2024)
- blood pressure readings : 133/79/100 - 134/79/100
Respiratory investigations ongoing : As regulars know my chest is giving me a lot of prohlems re breathing, sinuses, coughing and wheezing let alone the rather disturbing ‘death rattle’. I now have Fostair 100/6 mcgs inhaler for use once in the morning and once at night. Mobility is definitely having issues re breathlessness, weakness. Tests and et more on this coming up.
My CK levels are below 50 which is really good, HOWEVER, I still have enlarged glands AND my blood results are echoing the FACT that my body is still fighting various infections? A lot of antibodies in the mix and some of them NOT good.
Prednisolone is 5mgs per day.
I’ve got some more LATEST blood results coming up...
PLUS more blood testing ongoing today..
Upper body scan and other tests.
Methotrexate is suspended for the moment.
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