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August 2024 journal page.
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30th August 2024
Managed to get out. Short trip out to pick up meds. Chest is tight, some lower calf pain and discomfort. Feet too are aching. It’s that dull but kind of gnawing ache. Can do little to relieve it.
NOT, having current blood results, is continuously proving to be a nightmare. I don’t know so much that I should be aware of and I want viewers to KNOW that there is truly something shocking about all of that.
If you are thinking, the words NEGLIGENT and NEGLIGENCE then you are NOT alone. The upcoming blood tests will I AM SURE simply emphasize just how some have echoed those words to perfection.
I had the right, to know, if they were NOT going to be doing regular blood testing, so that I could have taken action, to make sure those tests were done. Even privately. THEY denied me that, by NOT telling me, what they were up to OR NOT up to.
Therein lies the FACT that I have pointed out to you all. YOU cannot trust them, they are OMNIPOTENT, they are NOT GODS however much they may have you believe they are AND that you should consider them allowing you to have your bloods taken a privilege granted by them. OF course they won’t tell you no nor put that in writing so it can be recorded, challenged.
That I think is a serious flaw, re the NHS (UK) that I think has to change. They want to make decisions made by some with ‘tunnel vision’ or according to the works of ... but not be liable for such IF those decisions of judgements turn out wrong.
You have to be their, NODDING DOG. I have to emphasize in all fairness that NOT all are like this. However what I found horrifying is the number who clearly are. It’s the old self gratification, the ego trip, the bullying, do as you’re told or else mentality.
Made worse, by those failing, re tests and results. The muscle biopsy, the punch biopsy, both of them a complete waste of time. ‘Surgery failure’.. to NON existent, inaccurate results.
This tunnel vision re so called Polymyositis that was so wildely inaccurate re the actual Necrotizing Myopathy “Oh let’s put you on METHOTREXATE, the one size fits all, textbook wonder treatment. Where I realised, how suddenly it almost destroyed my kidneys. But never mind eh.. weeks later, are we putting you on METHOTREXATE again? I feel so enthused at the thought of that, or NOT.
Now I’m upset... no more blood testing for you.. no nodding dog.. no treats. YOU WILL bow down before me and my minions.. I think viewers you get the gist of what I am getting at? It would be so laughable if it were anything but.
Blood Pressure 169/95/79 174/94/79 181/81/84
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27th August 2024
Private medical examination, blood testing booked for Sept. Time and place convenient to me.
I will let you all have the results when I have them. Let us see if what has happened is showing some serious issues re the GP / other medical when it comes to my health and well being.
Weekend, has been once again problematic. I am having to be very careful re my mobility. I dropped a plate of food which obviously is NOT good. Hand jerked and that was it. Spasms like that I have had before so nothing new BUT it appears some clumsiness is getting to be more common. THAT does not bode well for me. Increased CK levels? Well they certainly could not tell me.
I’ve improved my diet but putting on weight or body mass is not happening. I have Protein showing in my urine which is what I would expect with Kidney related issues. Left and Right side pain lower back, sharp at times, crippling pain.
Urine is darker. I am keeping fluids going, stepping up input to increase output and hopefully flush anything untoward out of my system. Prednisilone is now 6mgs daily but I am going to drop that to 5mgs from 2nd September.
Chronic fatigue remains virtually unchanged. Some slight hip pain. Nothing too serious.
Blood pressure: 163/93/89 - 156/105/93 - 162/98/90
More comng up.
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I am now having the tests done privately, which means within one week to two weeks re the results that
I will HAVE not my GP . I want to see the results that my GP is quite happy to wait around for 5 to weeks for ?? I want you ALL, to see those results. ..
The tests are NOT just bloods, but a full physical check over. Electromyography (EMG), where a small needle is inserted through your skin into your muscle and used to measure the electrical activity of your muscles. I have already had one of these tests in 2023 so it will be interesting to see the changes. I will also be putting in a request that the former results are available to me. Don’t be surprised if they find a mountain of excuses, NOT to provide me, with them, this is after all the UK NHS not forgetting the GPs; the worst. As I have told you all before. IT DOES not matter HOW many tests, scans, investigations they do if you do not have the test results OR worse still, it is NOT what they tell you but what they do NOT tell you. Failed tests, lost test samples, test results re what you are told, that are not the full picture? What is the term ‘economical with the truth’. The polished rhetoric, that so many politicians spew.
Justified to be angry? when you find out later that they failed on this?
23rd August 2024
It is important to KNOW that by NOT doing my blood tests ‘they’ have denied me access to important VERY important information VITAL to my overall health and well being. FACT. I WILL be asking for an explanation from my GP and others pertinent to this; for WHY those tests have NOT been carried out?
7pm
Neck re crunch and spasms Cervical spine, NOT good. Neck is swollen? I still think this could be THYROID related but we will wait and see what those bloods show. At the moment and I have had NO tests for over 16 weeks that would tell me if my thyroid is good bad or indifferent.
Lower back pain ? Spine? A lot of overall discomfort. Thanks to those who have failed me re some of the tests results I do not have, I am like a blind man stumbling around in the dark. I am trying to do simiple things like keeping my fluids flowing. At least to be able to flush out but also to see if I am getting any reaction from ie my Kidneys. Lower abdomen, bladder / intestine discomfort. Prostate?
Blood pressure : 159/78/97 - 159/86/97
7am
Blood pressure : 177/89/84 - 174/90/88
I have right side lower back pain sharp bursts - Kidney? I already have problems with my LEFT ?Kidney?
It will be interesting to see if the PRIVATE BLOOD testing comes back with issues ref Kidney function tests. I am almost 80% sure that pain is Kidney related.
Temps Fahrenheit :Left Thigh 93.5 Right Thigh 93.7 Abdomen 93.6 Forehead 94.3 UTongue 96.4
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I need viewers to remember this: We will come back to this..
My oldest brother had spina bifida. Spitz Holzen valve , my niece has Spina Bifida with Spitz Holzen valve. My oldest brother AND sister both died from HUNTINGTONS CHOREA.
Symptoms of spondylosis include:
Stiff and painful neck
Lower back pain and stiffness
Difficulty keeping the back straight
Tingling sensations in the arms, hands, legs, or feet
Numbness and weakness in the arms, hands, legs, or feet
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22nd August 2024
Update re blood testing. My GP has text sent to me :
‘Dr ***** gas requested your blood test - appointment booked re home visit by phlebotomist on the 16th SEPTEMBER 2024 between 10am - 13.30pm ‘ 3 weeks+ from now..
OK so, that would be SEPTEMBER, MID SEPTEMBER ? Taking how long re the test to the test results to the results being sent to the GP and the GP getting the test results to my seeing them?? IF at all? OR a cut down version.. !?
A week ? 2 weeks?? Ah now we are into OCTOBER.. That is over 5 weeks!
Lymphocyte, Neutrophil, Mean cell volume, Platelet count, RBC, WBC, Haemaglobin. MCHC, Potassium serum, Sodum, CK levels, Urea, Protein, HbA1c blood glucose, Liver function test, Kidney function test.
Separate HMCG, (SRP) autoantibodies, HMGCR Autoantibodies. (can take up to 10 days)
Now given the hell, I have been experiencing recently, ONCE again, I am treated to the usual verbage response, I have come to expect, from my GP.. HOW LONG AGO was my LAST blood test? Are we looking at almost 16 weeks+ ? I truly see how much my GP is concerned, re my health and well being.
In short ENOUGH is ENOUGH..
Thus, this is NOT happening!
I am now having the tests done privately, which means within one week to two weeks re the results that
I will HAVE not my GP . I want to see the results that my GP is quite happy to wait around for 5 to weeks for ?? I want you ALL, to see those results. ..
On the 16th I am seeing a neurologist professional elsewhere. Thus their home visit is terminated.
More to follow. Test results will be, with latest updates sent to Neurologist team, 2 researchers (student doctors doing their degrees based on auto immune etc). plus others including Johns Hopkins USA.
I have acquired a second digital temperature unit for comparitive testing, on temperatures.. my earlier readings, being critically low. It will be interesting, to see if, the readings are the same or similar.
I also have a new under the tongue digital unit.
Up to date readings coming up... ______________________________________________________________
I have decided from today 22nd August 2024 that I will NO LONGER comply with requests for tests, examinations by the NHS re their medical consultants, GPs and other medical related personnel UNTIL
A full blood screening is carried out;
Lymphocyte, Neutrophil, Mean cell volume, Platelet count,
RBC, WBC, Haemaglobin. MCHC, Potassium serum, Sodum, CK levels, Urea, Protein, HMCG, (SRP) autoantibodies, HMGCR Autoantibodies.
HbA1c blood glucose, Liver function test, Kidney function test.
Last carried out in April/ May 2024?
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10pm BP : 165/88/98 - 168/93/102
I will acquire a 2nd temperature digital unit so I can compare temperature readings. . Likewise under the tongue and WITNESSED. Make sure you too have YOUR issues WITNESSED. Anyone who thinks the NHS, GP will believe everything you record, tell them then think again!
Not a good day. Body overall temperature is still seriously low. Now at 95 F (normal 98 F + - 10%) Not the first time I have experienced this situation. Will have to use. a hot water bottle and a blanket, for a few hours, to see if, I can bring the temperature back up.
Ambient room temperature is 79F (22C) Raising the ambient air temperature will NOT I have to repeat this AGAIN; does NOT do anything re my own body temperature. FACT. It can be like a sauna and it makes NO difference. A hot water bottle and a blanket dose appear to have some effect.
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I am ‘sick’ of this tacit approach, by some so called medical professionals who suddenly decide since APRIL of this year (2024) to have me attend an appointment with them. Knowing they failed me re ongoing blood testing. other tests and examinations.
Whilst I continued to suffer and address issues over the last 16 weeks. As for my GP? I need to ask them in writing as to WHY they have done NO blood testing, other vital tests. What is that, payback for me not being their nodding dog?
On a scale of 1 to 10? 2 at most re both.
T8 is being problematic. ‘vertebrae fracture.’ Hence Rheunatology wanting me to attend - their last appointment in APRIL 2024 YES I can appreciate their TACIT concerns; or not. .
I think, I am going to have no choice but to resort to some private blood testing and then ‘after blood’ is an understatement. I won’t be sparing the terms neglect and negligence.
Metastasis is bad. The spread across my upper torso with tightness of the chest, swallowing, breathing and overall discomfort coupled wth Chronic Fatigue ?! A genuine nightmare.
Made worse I suspect, by not having current up to date BLOOD RESULTS!
Calf pain, is seriously not good. At times a lot of discomfort there. Lower numbness, remains high at over 35 - 40% Upper at >35% Neck stiffness not good. Hands swollen, painful at times.
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21st August 2024
Blood pressure. 169/98/92 - 165/102/94 - 173/93/91
BEING PESTERED RE DIABETIC EYE SCREENING (UK) ?
Did you know that GP’s get PAID by the NHS?
‘Yes, the NHS (IK) pays GPs for diabetic eye screening, through the Diabetic Eye Screening Programme ‘.
9pm
Left thigh / scrotum / right thigh TEMP 93.6 Forehead 93.8 Palms 94.8
Lower left leg calf area 93.5 This is probably equatable to internal body temperatures. Hence why I end up with bouts of cold, clammy, sweating. Bladder discomfort, kidneys, definite crippling spasms on the left side, KIDNEY area.
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19th August 2024
I need to take time out to make a VERY valid point,.
I have done an enormous amount, to cover my health and well being and in doing so relieved my GP and other medical professionals of having to do those tests et themselves. Blood pressure, glucose. weight. overall health and well being, mobility and motivity.
When it comes, to my BLOOD RESULTS which I NEED to rely on most of all? NOT done. Thus I do NOT currently OVER the last 8 weeks PLUS, know, what my general blood results are.. including CK levels??? I have swollen glands both arm pits.. FACT. I know need to ask my GP for explaining WHY these have NOT been done.
Sudden drop, in body temperature, meant I had to use, a hot water bottle / blanket, to restore some heat. REALLY cold to the point of shivering. NOT GOOD. I have experienced this before, but this is the first time in a long time that it has crippled me again. Hypothermia triggered by? Ambient room temperature makes NO difference, it can be a SAUNA and it makes NO difference.
Chronic Fatigue has been a nightmare. Made worse, with lower back pain BUT seriously bad ‘kidney’ related, stabbing pains; left side. NOW, please remember, my UPPER body is >30% NUMB! So take my pain and add on that extra 30%? SERIOUSLY NOT GOOD.
I should add, CRIPPLING to the ‘kidney’ related, stabbing pains; left side. At the moment my mobility is getting more and more impaired.
I am waiting for the next trip out to experience a collapse.
YES I am currently, looking into how to make an official complaint re GP etc failing to deliver on my health and well being. The SQL database will provide me with more accurate review of the last 18 months. It will certainly highlight certain areas bordering on questionable actions re ? neglect / negligence? You will be able to judge for yurselves.
Dry throat and THIRST is also under investigation BY ME. ??
I can do little as I do NOT nor have had BLOOD TEST results for over 8 weeks! Thyroid related?
I am on Levythyroxine 25mgs OR 50mgs (alternate daily dose)
Often the dryness of the mouth et is more pronounced after taking that ??
If you have a thyroid disorder, you may also have dry mouth. If you're still learning about your thyroid problem, you may not have had time to make the connection. But the link exists because thyroid disease also means that the salivary gland produces and releases less saliva. And less saliva leads to dry mouth
Lower legs, re calf pain, VERY noticeable. Just overall discomfort and, makes it difficult to walk. A pronounced at times, weakness, particularly in the ankes to the point, where I have to be careful NOT to stumble.
BP : 167/94/92 - 172/97/97 - 169/101/94 - 178/100/91
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14th August 2024
I am going to review my food intake. Re what I take and how it affects my health and well being. I am experiencing some uncomfortable after effects from certain foods I ingest.
I do, try, to avoid processed foods. Especially HIGHLY processed ones,
Certain foods in the past, have been a major problem ie Multi grain bread ? I end up with Irritable bowel syndrome? Yes all the farting, gut rumbling, major discomfort, diarrhea.
Certain SOUPS, cause me a lot of digestive discomfort, including acid reflux or alkaline reflux. I’ve now started to make notes on the ones that do this. To avoid them.
I am, going, to try gluten free, for a while, re a lot of products and, see if that makes any difference. It is important that I try and help myself by finding foods that cause me the least discomfort.
Fresh meats, NOT processed. Natural vegetables. (fresh frozen is fine) but also salads, fruits. I need to maintain a healthier gut, though my ascending, transverse and descending colon can still be problematic.
I manage to keep going, simply because, I am NOT, going to end up at the mercy, of those, who can’t even, keep my blood testing up to date.
So far, I am doing things, to protect my own health and well being, based on my making judgements that can be wildly inaccurate, simply because, THEY are not doing my blood testing, providing me with up to date results that I can look at and go.. ah I need to do this, we need to do this..
Is it bordering on negligence re their failure to do this? Well we already know of several issues I can point to that were ignored by them. That led to certain issues being created, exacebated and made worse?
Without them, of course, having to take responsibility, in leaving me, with the only solutions being, to dope whatever is causing me problems BUT ones that I could possibly NOT have had IF they had done their job properly?
BUT then, they are NOT GODS. It is based on THEIR, often middle of the road, one size fits all, judgments AND sometimes; WRONG diagnosis. I need to emphasize this WRONG DIAGNOSIS. I have Necrotizing Myopathy
Blood pressure 164/ 98/ 100 - 151 / 94 / 102 - 172 / 93/ 97
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8th August 2024
Blood pressure 158/ 85/ 91 - 150 / 89 / 96 184 / 97/ 97
I’m battling CHRONIC FATIGUE and a whole host of other little nasties with chest tightness and though I have managed to suppress the ‘death rattle’ it still leaves me feeling wheezy at times.
My neck, as I have already pointed out, is a dammed nuisance. Stiff, creaky and generally some pain. My hands are also a little puffy and again joints creak, crunch.
I am NOT putting on weight, my body is still showing signs of loss of muscle and body mass in general.
We do have to remember that THEY obviously don’t care as the last time I had my CK levels or bloods checked? MONTHS and I say again MONTHS ago. So much for patient care and !
I have an appointment coming up re seeing a NEUROLOGIST. Time 08.30 in the morning and a 40 minute journey. It takes me a MINIUM of TWO hours to get ready.
Which means I have to be up at 5 in the morning !
I don’t feel anywhere, cognisant until after 9 am waking up.. Let alone 5am !! This iss those making appointments again who have not bothered to read the patients notes THE SPECIAL ones NOT the rubbish NHS, ones that are out of date.
I have said it before .. tell me how they can treat me without up to date BLOOD TEST results? It’s a form of negligence. Let me repeat that again; NEGLIGENCE.
When the new web with SQL database is completed you will be able to see for yourselves what I am talking about. It is truly shocking to see what I have gone through and the continuous fight against the establishment one size fits all, tunnel vision, next please mentality.
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Blood Pressure: 172/ 91/ 94 - 159 / 82 / 90 - 162 / 83/ 93 (3rd August )
MRI full spine - Thank you to M and co. re that.
My neck has been a real pain in the neck.. VERY creaky and crunchy, more so, than my usual bowl of cornflakes.. Just turning my head can be painful. BEFORE the MRI so it might be interesting to see how that area looks..
My neck re my THYROID ? I’m suspicious, that it may be swollen sometimes, because my Thyroid is playing up. That could, account for some of the tiredness and lethargy.
Chronic FATIIGUE is a major nightmare!
My general exercises tend to help me WHEN I can do them BUT! my CALF muscles are also playing up with that nasty sensation of CRAMP AND CALF PAIN. Associated with blood clots and yes I have had those. So yes I am more than aware of and, try to ease back whilst checking my BP a little more often.
I am on ‘Eliquis’ = Apixaban 5mgs 1 x 5mgs MORNING, 1 x 5mgs EVENINGS :
3rd August as above
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MRI scan full spine coming up 2nd August 2024
Take a look at this YouTube vid... https://www.youtube.com/watch?v=5K4sh1-R8PQ
Hows it go.. ‘Many a tear has to fall..’
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An SQL database will shortly add search and other related functions to a brand new web site.
Its important to have that to illustrate the issues I have had, how repetitive on occasion AND
cause and effect with documentation scans to illustrate the various, scans, tests and more with little or NO feedback or response.
What I discovered has been shocking. Not just from the GP aspect but also the failure of those who take the middle of the road approach. One size fits all and take it or leave it.
I decided I was NOT and on reflection its been one helluva fight that at least has given I believe to be the TRUTH, some extension of my life.
Make NO mistake what I have is a slow killer. Eating me from the inside out, what was originally realized taking place that so many chose to ignore. NOT doing certain tests because they knew I would be proven right.
Numbness, coldness, sweats, abdominal pain and discomfort. Spinal issues and discovering along the way that some serious problems they had NOT even told you about, you’ll find out more when the new web comes online.
Necrotizing Myopathy
Necrotizing myopathy can also be referred to as necrotizing autoimmune myopathy (NAM) or immune-mediated necrotizing myopathy (IMNM). The condition is characterized by signs of necrosis, or cell death, in the muscles, which causes weakness and fatigue. As with other types of myositis, there is no known cause or cure for necrotizing myopathy.
From breathing, to swallowing to general mobility its been one continuous fight. Some days a living hell. Getting some control, regaining some well being?’ only to have something else kick in and kick being the operative word here as it literally can ‘kick’ you down.
GP’s other medical so called professionals? They don’t and I have to make this CLEAR, they DO NOT live it, breathe it (well when you can) feel it and how it affects YOU.
They use, their middle of the road, the one size fits all and, it must be this or this, but never what YOU believe it to be, OR discover, time after time that YOU are RIGHT? TOO late sometimes as they have chosen to ignore and the damage to YOUR health and well being; is done.
I’ve said it before and I will say it again. It is the arrogant almost bullying attitudes, some have, when they are shown to be wrong OR their diagnosis, treatments, conclusions are suspect?
How can anyone, prescribe medications, treatments, diagnosis based on NON existent CURRENT, UP TO DATE BLOOD RESULTS, TEST RESULTS? FACT!
Which means I have to assess, base my judgements on what I am going through. One purpose in mind, to ease the situation, to give me some acceptable level of health and well being and WELL BEING comes to the fore.
It’s NOT always right, because I don’t have CURRENT BLOOD results or in my case CK levels though they want me to reduce my Prednisilone levels but when were they last checked? So reducing my Prednisilone levels based on WHAT? GPs???
All in all, the whole situation is a mess made worse by those, who are NOT, doing essential tests such as BLOODS / CK levels in particular. The database will give access to all of the tests to date and believe me what they will reveal is shocking.
I keep a note / record, of all TEXT messages / correspondence / incidentals. I have had no choice but to RECORD telephone conversations. meetings and more. I now have to resort to a BODY CAM to record not only sound but visual.
Chronic fatigue!! Major NOT good! It’s been a sreal struggle to maintain some ‘awareness’ without feeling too tired, too lethargic, to do anything other than sleep! (11 hours!). I suspect Monday was a precursor to all of this.
Some of tbe worst so far, a major fight to keep from falling asleep.?
Breathing, can be irregular and noisy. Mobility and motivity varies sometimes erratic because of different issues easing or complicating things. I have to be VERY careful re swollen calf muscles (blood clots), cramps lower limbs can be really painful.
NUMBNESS, continues re Lower limbs up to 45% Upper limbs /torso up to 30%
I still am getting odd days when my body temperature is COLD and ambient air temperature upwards of 25 C (75 F) has absolutely NO effect. I have to use a hot water bottle and blanket to restore my body’s temperature to a warmer level.
Pulmonary hypertension ? I swear, they missed this! All of the symptoms were there EARLIER when the possibility of my NOT ending up with the pulmonary problems I now have might have been heavily reduced or avoided all together.
Shortness of breath Fatigue Dizziness or fainting spells
Chest pain CHEST DISCOMFORT Swollen ankles legs and abdomen
Cyanosis -Bluish color lips and skin Heart palpitations and faster pulse rate
Some of those symptoms pre dating 2023!!
So now you understand why my trust, in my GP, let alone other, so called medical professionals since.. like walking across a frozen lake with cracked ice..
I have up dated my MEDS page CLICK HERE
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