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Changes from JUNE onwards : Page content is based on a MONTHLY overview.
Unchanged issues. Acute Polymyositis. Extensive nerve damage. Myalgia. Dysphagia. Lesion (Patchy granular) Body temperature. Abnormal growths. Unknown test results. Extreme Creatine Kinase (CK) levels. Extensive muscle damage / wasting. HMGCR Autoantibodies ?+ Necrotizing myopathy
A ?Lesion started about the size of a 10 pence piece and has reduced over about 6 weeks. Granular, hard, scabby but resistant to being debraided, to being cleaned with surgical spirit etc NOW up for bioipsy? TIREDNESS remains a MAJOR issue ! cannot emphasize how bad this is. It has become debilitating to the extent it almost stifles my mobility, affects my cognitive functions AND general concentration.
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Important updates: CURRENT: Latest FIRST !
The RIGHT ear lobe AND EAR.
The ear lobe is noticeably NUMB to the touch, RIGHT EAR :
Hearing LOSS is about 60 to 80 % in comparison to the LEFT ear etc
Some ‘bubbling in the Eustachian tube’ No ‘ataxia’ or inbalance noticed.
Whole of ‘outer’ ear lobe is numb to the touch. CLICK HERE FOR MORE INFO
The R eye socket is showing signs of ‘bruising’ / blood into the surrounding tissue et Some swelling in contrast to the LEFT eye socket et which is far less affected.
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Tues 21st June 2023 : Grail NHS blood test completed. Interesting to note that where the blood was taken a small weal raised lump formed, that did end up as normal with slight bruising.
HOWEVER on Wed 22nd June 2023 the right arm from the humerus to the radius and ulna / hand is extremely painful and arthritic borderline exhibiting ‘tunnel carpal syndrome’. Almost nauseatingly raw and considering overall ny pain threshold is HIGH?? I also have a faint RASH all over my arms..
ENT (Dysphagia) assessnebt completed. On review and monitoring Micro Laryngoscopy completed OK!
.More to follow !
I am now taking NYSTAN (Anti fungal for possible throat ‘thrush’,) I am hoping that this will ease the problems U have with swallowing and worrying possible ‘Dysphagia’. 100,000 units / ml 4 times a day after eating for 1 week. Let’s hope there will be NO side effects!
Two important appointments coming up re
1. Dematology re that lesion ? Biopsy?
Whilst I am OK with going ahead with the biopsy on the lesion, the micro inspection of the throat (re Dysphagia) I am NOT going to consent to until after the 18th July. Because of the various restraints and issues this can create in its wake. I am otherwise engaged from the 7th July to the 18th July and I am not willing to compromise or be compromised re my health and well being to the extent that it affects what I have planned for that time period.
(Loss of voice, resting of the vocal chords and other restraints apart from having to rely on others is going to be unacceptable until after the 18th July.)
The small granular ‘spot’ iI have sought a second opinion from my GP re this and I feel that we concur that I was somewhat right to feel concerns over this ? Ulcerative lesion ? The lesion appeared some weeks ago and I have tried to do several things to see what happens - It remained, hard to the touch, granular, scabby but STILL NO real bleeding, seepage etc from it. IT HAS since reduced down from the original 10 pence piece size that it was AND that does NOT detract from what it IS and whether it is malignant OR benign ? I think a biopsy re this is probably a good idea and looks as though that will follow.
Re DAILY DOSE of ASPIRIN 75mgs NOCTE : Taken for over 4 days and no noticeable side effects etc HOWEVER there are those who are legitimately concerned re my doing this as I AM susceptible to having a bleed from ie peptic ulcer et Were that to happen, the aspirin could exacerbate the seriousness of such happening and make the bleed worse to stop etc THUS I have decided NOT to continue with the Aspirin.
Recent blood test results etc CK levels are now below 1000 (999) but obviously still dangerously HIGH.
Almost certainly aware of what I conclude is and are showing side effects regarding NECROSIS of the tissue - sub dermal layers / muscle etc The numbness and COLDNESS of the epidermal layers re my body overall remains constant AND worsens when my body temperature drops dramatically after eating a meal etc FACT. Its liken to touching the body of a corpse, take my word for it.. clammy, cold URGGGH ..
DYSPHAGIA is definitely present with some ongoing difficulties experienced re swallowing liquids OR food.
Some possible THRUSH infection of the throat for which I am now using Nystan oral suspension to treat 100/000 units per ml. I’ll do the full course re this and see if it eases my throat.
A planned micro examination / exploratory look at the throat, epiglottis etc is requested and I have agreed to this.
Monday 29th = Overall a bad day. Blood pressure remains problematic.AM 164 / 112 /92 - PM 165 /105 / 88
Tues 30th May BP AM 179 /108 /85 PM 186 /110 /89
Wed 31st May BP AM 176 / 109 /89 PM 172 /113 /91
Thur 1st June BP AM 187 / 108 /84 PM 173 /103 /84
Fri 2nd June BP AM 186 / 110 /89 PM 176 /109 /89
New soft lump of tissue on R inner ELBOW end of the humerus- not muscle. Looks like a swelling but no discoloration.
Sat 3rd June BP AM 172 /113/ 91 PM 173 / 103 /84
Sun 4th June BP AM 155 /108/ 94 PM 158 /107 /87
Mon 5th June BP AM 175 /107/ 86 PM 171 /106 /87
Tue 6lth June BP AM 162 /101/ 82 PM 163 /108 / 85
Wed 7th June BP AM 158 / 99 / 81 PM 160 /104 /88
Thur 8th June BP AM 172 / 95 /100 PM 162 / 94 /98
Fri 9th June BP AM 164 / 93 /98 PM 161 / 96 / 93
Sat 10th June BP AM 157 /105/ 87 PM 168 /100 / 98
Sun 11th JuneBP AM 160 /106 /87 PM 169 / 96 / 98
Mon 12th JuneBP AM 157 /105/ 87 PM 168 /100 / 98
Tues 13th June BP AM 156 / 101 / 87 PM 159 / 100 / 87
Wed 14th June BP AM 169 / 98 / 97 PM 161 / 96 / 101
Thur1 5th June BP AM 157 /105/ 87 PM 159 / 100 / 87
Fri 16th June BP AM 169 /98/ 97 PM 158 / 96 / 99
Sat 17th June BP AM 174 / 91 /87 PM 170 / 96 84
RE BLOOD PRESSURE READINGS : From now on I will only record those that are considered problematic with date times etc
Lower back pain is causing me mobility problems. Noticeable when bending over to pick items up et but generally moving around does little to ease it.
The ongoing investigations / conclusions being assessed are now based upon the never changing and worsening increase in nerve damage particularly around the L thigh BUT also spreading with noticeable lack of sensitivity / nerve damage across the buttocks. lower back and R thigh.
The damage caused from the previous prescribed Atorvastatin with indication that that could well have been the cause of the massive rise in C K levels over a given period of months et is also giving rise to the possibility that
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.
Like other forms of myositis, patients with necrotizing myopathy may experience the following symptoms:
Weakness in the muscles closest to the center of the body, such as the forearms, thighs, hips, shoulders, neck, and back
Difficulty climbing stairs and standing up from a chair
Difficulty lifting arms over the head
Falling and difficulty getting up from a fall
A general feeling of tiredness This IS a real problem, with tiredness and general malaise occurring spontaneously AND with little control when falling asleep for several hours at any given time.
Patients with HMGCR Autoantibodies
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 unknowingly develop this type of statin-induced necrotizing myopathy.
The nerve damage where sensitivity, has been seriously diminished AND is spreading. NO medical professional should be ignoring the FACT that what I am experiencing is heading for nothing less than a complete compromised immune system.
What is sepsis?
Sepsis is a life-threatening reaction to an infection.
It happens when your immune system overreacts to an infection and starts to damage your body's own tissues and organs.
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