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Quick links :WEEK 1 (This page) : WEEK 2 : WEEK 3 : JUNE (monthly review)
Weekly stats sheet Monday to Sundaty inc. Week from May 8th 2023
Commencing
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Well being : Generally how I feel at that moment. Visual Acuity : How good my eyesight is in general. Cognitive: The ability to think OK, do simple to more complex tasks OK etc Mobility : Rising from a chair to general tasks such as walking etc Strength : How strong I feel re my arms / legs etc re some exercises to general tasks such as lifting light objects, grip etc Gut : Can be Quiet to noisy to acidic / strong alkaline to gassy. Overall from Q to N to AC to AK to GY Body temperature is measured at 4 points : Abd – ABDOMEN FH – FOREHEAD EAR : EAR Palm: CENTRE of L hand Glucose : Pin test with meter : mmol / l ALWAYS 1st reading of the day. BG readings are only taken any other time : because of a need to do so otherwise NOT taken.
URINE : test results FRESH sample using dip test (Clinistix) readings : N: Normal NO concerns. Otherwise shown as ie Protein + Blood + Glucose + Ketones + etc followed by a NUMBER from 1 – 5 Highest being more critical ie of concern. Any other concerns will be listed re colour / smell / any sediment / pain on passing urine et et
Additional notes : can be anything noticeable or relevant : Overall body temperature / pain and other discomfort et et
Myophasia : Overall muscle tension / spasm / pain / discomfort especially in certain identified as problematic arreas.
Myofascial pain syndrome?
Myofascial pain syndrome is caused by a stimulus, such as muscle tightness, that sets off trigger points in your muscles. Factors that may increase your risk of muscle trigger points include: Muscle injury. An acute muscle injury or continual muscle stress may lead to the development of trigger points.
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MONDAY 8th AM: Blood pressure : AM : 158 / 106 / 88 Body temp : Abd: 98.3 FH 98.1 EAR 98.4 PALM 99.4
GLUCOSE 5.4mmlo/l URINE : OK no concerns. MYOPHASIA : NECK: 6 ARMS : 6 HANDS : 5 Puffy, stiff, clicky. Chest : OK
LEGS / HIPS etc Left TH (Thigh) 3 remains painful and loss of sensation with apparent nerve / muscle damage. Marks remain visible re (under the skin bruising / after bleed et markings : light grey etc) Some COLDNESS to the touch re body temp in comparison to the rest of the body LOWER / COLDER.
RIGHT thigh : 7 less discomfort and more responsive. COLDER to the touch BUT warmer than the LEFT thigh. VERY light pain/discomfort.
HIPS : PELVIS : LOWER LUMBAR region : Slight discomfort but overall manageable.
OTHER : JAW et SWALLOWING : DIGESTIVE tract REGURGITATION : Slight dryness of the throat could affect swallowing et Definite ‘lump in the throat’ when swallowing water.
APPEARANCE : ANY unusual marks, rashes, lesions et : Other than the palms that still have a slight ‘rash’ ie blotchy at times red patches to them. NO changes there. APPETITE : ok
Overall : Well being : 8 (highest is better/10) Visual Acuity : 9 Cognitive : 10 Mobility : 8 Strength : 8 GUT : Q
Add Notes : My body temperature is warm to hot ROOM temp 23 F whereas on SATURDAY I had a really bad day re my overall body temperature that was abnormally COLD for over 12 hours AFTER A MEAL. . COLD sweats, dripping sweat, unable to restore body temperature until late evening AND with water ONLY NO food intake.
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MONDAY PM After a meal (boiled fish / veg / mash) BODY PERIPHERAL TEMPERATURE dropped critically with clammy, cold sweating; seriously NOT good. The THIGH area temperature ALSO dropped. Overall as has been the result AFTER consuming a meal the result remains of some major concern. I cannot stress enough as to how bad the issue is.
This time I used a ‘hot water bottle’ to try and maintain some body heat. It DID help to ease the cold clammy sweat by at least providing HEAT to the area. HOWEVER it still took several HOURS before body temperature overall came up to a more normal level. I am more than aware that my belief is; that issue is getting WORSE. Hot to COLD is much faster than before ?!
The THIGH area L leg, temperature dropped dramatically to a colder to the touch with the usual numbness present.
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TUESDAY 9th AM: Blood pressure : AM : 164 / 96 / 89 Body temp : Abd: 98.3 FH 98.1 EAR 98.4 PALM 99.4 GLUCOSE 5.7mmlo/l URINE : OK no concerns. MYOPHASIA : NECK: 6 ARMS : 6 HANDS : 5 Puffy, stiff, clicky. Chest : OK
LEGS / HIPS etc Left TH (Thigh) 3 remains painful and loss of sensation with apparent nerve / muscle damage. Marks remain visible re (under the skin bruising / after bleed et markings : light grey etc) Some COLDNESS to the touch re body temp in comparison to the rest of the body LOWER / COLDER.
RIGHT thigh : 7 less discomfort and more responsive. COLDER to the touch BUT warmer than the LEFT thigh. VERY light pain / discomfort.
HIPS : PELVIS : LOWER LUMBAR region : Slight discomfort but overall manageable.
OTHER : JAW et SWALLOWING : DIGESTIVE tract REGURGITATION : Noisy gut some rumbling.
APPEARANCE : ANY unusual marks, rashes, lesions et : Other than the palms that still have a slight ‘rash’ ie blotchy at times red patches to them. NO changes there. APPETITE : ok Overall : Well being : 8 (highest is better/10) Visual Acuity : 9 Cognitive : 10 Mobility : 7 Strength : 8 GUT : N
TUESDAY PM After a meal BODY PERIPHERAL TEMPERATURE dropped critically with clammy, cold sweating; seriously NOT good. The THIGH area temperature ALSO dropped. Overall as has been the result AFTER consuming a meal the result remains of some major concern. I cannot stress enough as to how bad the issue is.
This time I used a ‘hot water bottle’ to try and maintain some body heat. It DID help to ease the cold clammy sweat by at least providing HEAT to the area. HOWEVER it still took several HOURS before body temperature overall came up to a more normal level. I am more than aware that my belief is; that issue is getting WORSE. Hot to COLD is much faster than before ?! The THIGH area L leg, temperature dropped dramatically to a colder to the touch with the usual numbness present.
Add Notes :AFTER A MEAL. . COLD sweats, dripping sweat, unable to restore body temperature until late evening. Applying heat to the abdomen helps alleviate the cold clammy sweat soaked sensation to a much warmer one BUT does NOT get rid of the underlying issues. Again, it took several HOURS to bring the body temperature overall back to a more ‘comfortable’ level. I am sensing more discomfort in the hop areas, the pain is definitely increasing.
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WED 10th AM: Blood pressure : AM : 186 /108 / 85 Body temp : Abd: N FH 98.3 EAR 98.4 PALM 99.4 GLUCOSE 6.1mmlo/l URINE : OK no concerns. MYOPHASIA : NECK: 6 ARMS : 6 HANDS : 5 Puffy, stiff, clicky. Chest : OK
LEGS / HIPS etc A marked increase in discomfort re the HIPS with noticeable increase AGAIN in them being more painful AND some sharp stabbing pains that are present whether stationary OR moving. Ankles are exhibiting some CRAMP sensations with the occasional spasms in the feet.
Left TH (Thigh) 3 remains painful and loss of sensation with apparent nerve / muscle damage. Marks remain visible re (under the skin bruising / after bleed et markings : light grey etc) Some COLDNESS to the touch re body temp in comparison to the rest of the body LOWER / COLDER.
RIGHT thigh : 7 less discomfort and more responsive. COLDER to the touch BUT warmer than the LEFT thigh. VERY light pain / discomfort.
HIPS : PELVIS : LOWER LUMBAR region : Increased lower back pain, more discomfort.
OTHER : JAW et SWALLOWING : DIGESTIVE tract REGURGITATION : Noisy gut some rumbling.
APPEARANCE : ANY unusual marks, rashes, lesions et : Other than the palms that still have a slight ‘rash’ ie blotchy at times red patches to them. NO changes there.APPETITE : ok Overall : Well being : 7 (highest is better/10) Visual Acuity : 9 Cognitive : 10 Mobility : 6 Strength : 8 GUT : N
WED PM After a meal BODY PERIPHERAL TEMPERATURE dropped critically with clammy, cold sweating; seriously NOT good. The THIGH area temperature ALSO dropped. Overall as has been the result AFTER consuming a meal the result remains of some major concern. I cannot stress enough as to how bad the issue is.
This time I used a ‘hot water bottle’ to try and maintain some body heat. It DID help to ease the cold clammy sweat by at least providing HEAT to the area. HOWEVER it still took several HOURS before body temperature overall came up to a more normal level. I am more than aware that my belief is; that issue is getting WORSE. Hot to COLD is much faster than before ?!
The THIGH area L leg, temperature dropped dramatically to a colder to the touch with the usual numbness present.
Add Notes :AFTER A MEAL. . COLD sweats, dripping sweat, unable to restore body temperature until late evening. Applying heat to the abdomen helps alleviate the cold clammy sweat soaked sensation to a much warmer one BUT does NOT get rid of the underlying issues. Again, it took several HOURS to bring the body temperature overall back to a more ‘comfortable’ level. I am sensing more discomfort in the hop areas, the pain is definitely increasing.
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THUR 11th AM: Blood pressure : AM : 166 / 87 / 106 Body temp : Abd: N FH normal EAR 98.4 PALM 99.4 GLUCOSE 6.5mmlo/l URINE : OK no concerns. MYOPHASIA : NECK: Painful ARMS : 6 HANDS : 5 Puffy, stiff, clicky. Chest : OK
This morning, the NECK is especially painful. Some cramp with a lot of discomfort AND reduced movement.
LEGS / HIPS etc A marked increase in discomfort re the HIPS with noticeable increase AGAIN in them being more painful AND some sharp stabbing pains that are present whether stationary OR moving. Groin is also exhibiting some noticeable discomfort sensation wise.
Left TH (Thigh) 3 remains painful and loss of sensation with apparent nerve / muscle damage. Marks remain visible re (under the skin bruising / after bleed et markings : light grey etc) Some COLDNESS to the touch re body temp in comparison to the rest of the body LOWER / COLDER.
RIGHT thigh : 7 less discomfort and more responsive. COLDER to the touch BUT warmer than the LEFT thigh. VERY light pain / discomfort.
HIPS : PELVIS : LOWER LUMBAR region : Increased lower back pain, more discomfort. OTHER : JAW et SWALLOWING : DIGESTIVE tract REGURGITATION : Noisy gut some rumbling.
APPEARANCE : ANY unusual marks, rashes, lesions et : Other than the palms that still have a slight ‘rash’ ie blotchy at times red patches to them. NO changes there
APPETITE : ok
Overall : Well being : 7 (highest is better/10) Visual Acuity : 9 Cognitive : 10 Mobility : 6 Strength : 8 GUT : N
Mobility: Getting up from ie a chair is with a lot more difficulty.
THUR PM : A meal with rice, appears to have less of an effect on the body temperature plummeting after it? HOWEVER, it did NOT stop that from happening entirely. OVERALLl: Experiencing some headaches, unusul for me as I normally in the past don’t get them? I am doing some investigation in to what appears to be on both sides of my skull, around the ears, some enlarged tissue / bone that stands out from the usual skull?
The temporal bones are a pair of bilateral, symmetrical bones that constitute a large portion of the lateral wall and base of the skull . They are highly irregular bones with extensive muscular attachments and articulations with surrounding bones.
There are a number of openings and canals in the temporal bone through which structures enter and exit the cranial cavity. The temporal bone also houses the structures forming the middle and inner ear.
I have to be subjective re some of the more unusual findings as it is important NOT to become paranoid! I will leave the ongoing concerns until my next session with my Rheumatology consultant.
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FRI 12rh AM : Blood pressure : AM : 167 /987 / 91 Body temp : Abd: N FH normal EAR 98.4 PALM 99.4 GLUCOSE 5.7mmlo/l URINE : OK no concerns. MYOPHASIA : NECK: Painful ARMS : 6 HANDS : 5 Puffy, stiff, clicky. Chest : OK
This morning, the NECK is especially painful. Some cramp with a lot of discomfort AND reduced movement.
LEGS / HIPS etc A marked increase in discomfort re the HIPS with noticeable increase AGAIN in them being more painful AND some sharp stabbing pains that are present whether stationary OR moving. Groin is also exhibiting some noticeable discomfort sensation wise.
Left TH (Thigh) 3 remains painful and loss of sensation with apparent nerve / muscle damage. Marks remain visible re (under the skin bruising / after bleed et markings : light grey etc) Some COLDNESS to the touch re body temp in comparison to the rest of the body LOWER / COLDER.
RIGHT thigh : 7 less discomfort and more responsive. COLDER to the touch BUT warmer than the LEFT thigh. VERY light pain / discomfort.
HIPS : PELVIS : LOWER LUMBAR region : Increased lower back pain, more discomfort. OTHER : JAW et SWALLOWING : DIGESTIVE tract REGURGITATION : Noisy gut some rumbling.
APPEARANCE : ANY unusual marks, rashes, lesions et : Other than the palms that still have a slight ‘rash’ ie blotchy at times red patches to them. NO changes there
APPETITE : ok
Overall : Well being : 7 (highest is better/10) Visual Acuity : 9 Cognitive : 10 Mobility : 6 Strength : 8 GUT : N
Mobility: Reasonable mobility : some motor neurone responses when picking up ie a cup or plate that results in the loss of grip. Spasm tends to eject the item from my hand sending it crashing onto the surface etc Overall my neck / shoulders and down to lower back / spine is painful and exhibits a lot of discomfort.
FRI PM :Usual cold sweats. Reduced ‘coldness’ by application of heat.Over the left thigh and abdomen. Helped but not where mobility is concerned as I don’t tend to want to move around whilst sweating ‘cold sweat’. If this continues I may look at such things as ‘heated blankets’ etc The time for the sweats to die away and body temp[erature to return to a more normal level appears to be reduced with the application of heat. THe Left thigh however remains COLD to the touch and whilst it too feels less painful to the touch the sensation and numbness remains about the same. It almost feels as though the underlying muscle et is ‘dead’ ie with little or no sensitivity. 
The ears both sides ? Behind them I have a straight line to them re the skull, hair, tissues etc as normal from the top of the head to the ears BUT just before the ears there is a slight indent (both sides) before my fingers can identify a mass of almost hard tissue forming a defined lump.. ? Note this is both sides and is a defined MASS of ??? About 5cms in width and about 1/2 a cm deep . Just before my fingers touch the mass there is a ridged depression VERY apparent (both sides). I would say the RIGHT ear mass is slightly less BUT still an abnormal mass?? They’re NOT painful to the touch and I would say some numbness with them.
It looks as though I need to cut the hair away et and expose this for photos etc so will look to maybe shaving those areas. __________________________________________________________________________________________________
SAT 13th May 2023
Overall, the weekend has no real changes bar those mentioned. Blood pressure has been a little higher than normal ie 171/108/82 - 172/112/86 176/106/80 It’s interesting to note that the PULSE rate hardly fluctuates and remains more or less within the 80’s
SUN 14th Some hot flushes to start the day. Warmer body temperature BUT I will not be surprised IF as usual after a meal I get the usual sudden drop in body temperature. I suspect given the ‘hot flushes’ that it may be a real nasty drop so am prepared to a ‘degree’ re this.
The mass behind the ears is of course of some concern. We have to remember that the skull with tissue on it does not normally have those masses behind the ears.. FACT. Thus their presence is of some concern though I am not getting hyped or paranoid as they fell like a ‘boney’ mass rather than actual muscle/flesh etc It’s not or appears NOT to be affecting hearing though I am given to think that it might still be interesting to have a hearing test done as I already know and partly due to my age! that my frequencies have changed with the lower below 1Khz not being so detectable and the higher frequencies above the 1Khz scale also compromised.
Little has changed re my legs FACT. The marks are still there though I would say they are slightly but STILL noticeably; visible. They’re spotty which kind of indicates maybe that some bleeding took place.. ? after the muscle biopsy? I’m not detecting NEW ones? I would add that the results from that ‘muscle biopsy’ are still NOT at this time; known,
Compromised to the touch AND some ‘pain’ remains. T he overall ‘sensitivity’ itself has not really changed with it remaining about 30 to 40% numb from the hip area to below the knees. The ankles I have noted appear a little weak at times AND some cramp/spasm in them.
Neck problems with stiff and painful to move at times can be really debilitating especially when it radiates down the arms to the hands causing them to become ‘puffy and swollen’NOT forgetting; painful.
However when it also radiates down the spine from the shoulders across them to the lower lumbar region? NOT so good. Almost crippling as mobility can be seriously compromised. Even the simple task such as standing up from a seating position to actually moving NOT so good and with great difficulty.
I do when I can, exercises that are specifically ‘tailored’ to improve those areas that require some specific attention re improving muscle strengths. I’m more than aware of the HUGE amounts of body mass that i have lost re my overall body mass especially apparent in both arms, the legs. It’s visibly clear when you look at those areas re seeing just how wasted they are.
Digestive system remains fairly noisy BUT not to the level where after consuming some ‘multi grain’ bread it was borderline ‘irritable bowel syndrome’ with all of the traits that that exhibilts and when I say mega BAD... let’s say I avoid that ‘multi grain’ bread like the !!
Generally I don’t appear to have the same issues with the ‘seeded’ bread I am currently using. I am also looking to do some experiments with NON gluten breads et to see if I get the usual drop in body temperature etc.
Diet is generally about average. I try to eat reasonably healthily with a good mix of meat AND veg etc. NOT so much ‘processed’ foods.. those I find are NOT good for me. (Not for most people). I don’t find processed, mechanically separated meats and sludge to be the least bit appealing.
Fluids : I try and maintain a good balance between input and output of fluids. Of course diuresis is important as I take steroids to tackle the high CK levels with the intention of flushing that out of the system. My CK levels have dropped signfically from over 16000 to a about 1000+ but are still a real problem. It’s difficult balance between exercising and improving muscle mass whilst also tending I think to stimulate the CK levels? The devil is in the detail..
Getting out and about is also important as some mobility other than just at home so to speak, somewhat limited especially when it comes to fresh air AND some much needed sunshine with all that radiating vitamin D in the mix. I’m currently waiting on the recent ‘MRI bone density’ test. I suspect that will also show some not so good issues.
L1 to L4 in the lower lumbar region I have absolutely NO doubts are compromised. The lower back pain can be seriously bad at times AND all of the nasties such as loss of sensitivity / numbness in the legs? to impairments that are a side effect of damage within the motor neurone network associated re those are pretty dammed apparent re what I am experiencing overall. A lesion would also produce almost identical results hence I have included a page on that subject that I think most will agree is worth the read.
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