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This page will act as the journal for JULY 2023
Unchanged issues. Acute Polymyositis. Neuralgia with extensive nerve damage <30 to >40% loss of sensation. Myalgia AND extensive muscle damage / loss / wasting. Dysphagia. Abnormal lesion (Gluteus Maximus) with subcutaneous damage AND currently awaiting results of ‘punch biopsy’ to ascertain if suspected malignancy is correct. Abnormal body temperature that causes the overall peripheral body temperature to be extremely COLD to the touch. Extreme Creatine Kinase levels .1000 and beyond. HMGCR Auto immune antibodies ?+ Necrotizing myopathy.
Extreme tiredness with inability at times to stay awake.. loss of concentration.
Various lumps, bumps and swellings. Capillary bleeding into the tissues especially around the ankles / lower limbs with swelling AND serious issues with cramp / spasms of the feet / lower limbs.
Updated July 29th 2023
Blood pressure has been interesting:
Early morning 180/124/91 to mid morning 182/115/88
BUT some hours later (evening) 160/94/83 159/89/89
Checked some hours later 184/109/89 171/106/84
I am curious to know what caused the sudden drop to the 160 etc I need to add that this was NOT due to increased medication etc HOWEVER I am going to be doing some monitoring re DIET, food and liquid intake as I suspect in this instance IT has me convinced IT affected the result. It is of course a known FACT that some foods etc CAN drop the blood pressure? MORE on this to follow.
OVERALL BODY TEMPERATURE re the COLDNESS and NUMBNESS etc.
It has to some ‘degree’ or should I say ‘degrees’! irritated me that when it comes to my peripheral body temperature being abnormally cold especially in certain areas such as lower extremities, that some who will NOT be named are given to some disbelief on their part.. This is a common factor that I have come across AND illustrates why I can be a little scathing when it comes to so called ‘professionals’ and their fixed mentality / attitudes.
My obvious solution is to silence the wannabe ‘critics’ for once and all ... That it seems can only really be addressed by the use of PROFESSIONAL ‘Thermal imaging’ which I am now looking into. NO, NOT NHS. though in fairness it should be as my situation I can attest to IS UNQUE re this body ‘coldness combined with a 30 - 40% loss of nerve sensation etc.
BUT! IF I do go ahead and pay for this, I will allow ONLY certain parties NHS etc to have a READ ONLY momentary access to the final reports. They will NOT be allowed to copy - make notes or use / print or make public those findings unless they have BOUGHT /PURCHASED the rights to do so. That way I can recoup the overall costs etc.
Which also means that if some person/s want to right up a study / journal report etc AND are prepared to purchase the reports etc with I should add full co operation within the terms and conditions of any agreement / contract; the actual study could be VERY interesting and well worth a mainstream publication write up / medical journal entry.
There is also a hint that some might be interested in doing some experimentation / trials re drug testing and similar experimentation to see how it affects my health and well being and whether of course IT achieves AND I have to add here.. a GOOD, BAD or INDIFFERENT result. Again IF I agree re that, they will have to pay for the rights to publication or use of any results but also BEFORE I will entertain any risks involved in such tests etc.
From the off when I first realised how seriously ill I was, that I was more than prepared to allow medical professionals to do tests, bloods etc physical examinations et subject to the agreement that they would NOT keep the results of such tests /findings from me. Lately I have become more and more aware of the huge number of results that have NOT been forthcoming in particular re the CK levels AND antibody levels etc
That is creating less co operation on my part and generating a more isolationist attitude towards asserting myself to protect my health and well being whilst NOT allowing some to attempt to bully and directly or indirectly attempt to force me to comply subject to their wishes. The ones that seem to believe patients have little or no rights when it comes to who is in charge AND oh yes.. they DO exist. Ah yes as I have said, those who TALK AT YOU and seem incapable of talking WITH YOU.. taking YOUR point of view, YOUR experiences into account.
Updated July 27th 2023
The ‘punch biopsy’ area remains volatile. No doubts that what is happening beneath the skin within that area of the lower back / buttocks is spreading AND remains cold to the touch, sensitive and at times creating a lot of disconcerting discomfort. Blood pressure readings remain problematic. 180/124/91
and or 168/105/90 185/109/101 I will be watching VERY carefully re these continuing daily readings.
The COLDNESS and NUMBNESS is on the increase across my LOWER LIMBS / BACK / BUTTOCKS etc.
A marked increase in what was problematic especially across the LEFT THIGH and no doubts on my part that combined with severe cramp in BOTH legs / feet coupled with poor circulation resulting in pins and needles sensation.
Hands can be SWOLLEN and painful.
Overall mobility remains compromised. At times I am struggling whilst continuing to fight the ongoing issues.
Blood testing and results etc remain VAGUE to non existent. It would appear that the general implied consensus on the part of those who are able to provide those results (where and when available?) is what I have come to expect Quote unquote.. ah the 1 in a MILLION ... moments.
I need to add and make clear that I have bloods taken at least ONCE a month : The CK levels are of course VERY RELEVANT and the last results re that are from MAY... >1000 JUNE? JULY??
As for the ANTI BODIES?? IT is a KNOWN FACT that these were seriously ELEVATED and such levels cannot be ignored. BUT where are the latest figures / results re those??
Updated July 23rd 2023 Added page : MOBILITY 1
I was away for over 10 days whilst I took care of some personal / family matters that given my current health issues, I considered necessary. HOWEVER whilst away it was a good opportunity to take some much needed ‘medical pics; apart from some others that illustrated how I took on some mobility tasks which would challenge me not only distance BUT terrain.
Overall it WAS revealing to see how much body mass AND muscle I had lost let alone how my immune system fighting with the CK levels had produced some lumps, bumps and NOT forgetting that lesion.
SO, to start with, let’s take a closer look at that LESION. Defined as:
a region in an organ or tissue which has suffered damage through injury or disease, such as a wound, ulcer, abscess, or tumour.
Let’s make a mental note re the word ‘TUMOUR’.
ok take a look at the problem that I have re this LESION and I am sure many will come to the same conclusions as I have. 
Notice the distincitve cut in the actual hard surface of the skin etc. The actual lesion has shrunk over the last 6 weeks from about the size of a 10 pence piece to what it is now. Notice also the DISCOLORATION of that distinct area.
Discomfort YES, Painful YES, Sensitive YES however the actual area also suffers from the 30 - 40% NUMBNESS that I suffer from body wise thanks to my motor neurone / neural network issues. THUS IF this area is sensitive AND painful at times?? with that degree of loss of sensitivity? I dare NOT think what it would be like without that numbness present! I have also been aware of what appears to be a wider area of discomfort and pain etc from the original which may indicate the lesion is causing more damage subcutaneously +
I will be having a ‘punch biopsy’ carried out within this area to determine if it is malignant or benign etc.
I am of the opinion that this is malignant. The lesion has probably been brought about by my immune system in its attack against the CK levels muscle damage particularly in this area AND relative to
LATEST UPDATE : Biopsy carried out on the 20th July WILL see how long it takes to process this via the path labs etc.
The gluteus maximus, the main extensor muscle of the hip. It is the largest and outermost of the three gluteal muscles and makes up a large part of the shape and appearance of each side of the hips.
Why the Gluteus Maximus? Well the LEFT thigh has been seriously problematic with not only the numbness present BUT a deep gnawing pain that got worse after the previous earlier, muscle biopsy. It is also an area that is constantly COLD to the touch. Lower back to buttocks to both thighs are affected. The position of the lesion is also indicative of damage from the CK enzyme attacks on that muscle resulting in a marked increase in auto immune antibodies being produced.
MORE to follow on this. 
The various trips out whilst away had me walking for some distances across a wide and varied terrain. I was determined to push my limitations to see what would transpire re overall mobility. What followed was certainly demanding AND revealed some other notable ‘issues’ of concern.
From steps and that meant climbing UP them or DOWN them, within a distance covered of over 2 miles I came across several of these AND others including varied ground surfaces from smooth to rough shod and uneven at times. Not forgetting slopes and inclines. All in all a good work out for my muscles ie lower body in particular. That meant the CALF muscles that of course later on would react accordingly.
The ankles proved most problematic. As you can see GO check out this page.. LINK
Stiffness coupled with capillary bleeding into the skin AND bruising. Calf muscles tensing up and creating a most unpleasant cramp within the muscles that was also quite nauseatingly painful.
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Update July 7th
Am about to embark on a journey to take over 10 days that will have me take an initial coach trip lasting over 10 hours.
That in itself can be problematic re the increased risk of DVT/DVE. To that end and NOT MY END... the use of a small dose of Aspirin, should help thin the blood and prevent clotting. Some evident CRAMP experienced in the lower calf / feet of both L and R legs, was initially worrying. HOWEVER, that has this morning somewhat eased, probably helped by the initial stat dose taken by me, yesterday re the Aspirin.
I will be monitoring my Blood pressure and continue the normal routine of twice daily : This morning 5AM : 181 / 105 /92
Looking at previous BP data preceding this? : 182 / 114 /93 - 165 / 96 /99 - 154 / 89 /118 - 155 / 91 /120
I will keep a record of the BP readings re the journey itself and its conclusion. It will be I suspect interesting, to see how those figures / data; correlates. IF I take my normal Gabapentin prior to the journey along with my current Prednisolone (4 tabs x 5mgs ) 20mgs ?
For blood pressure control, currently Ramipril 5mgs AM and 2.5mgs PM.
I have had the Barium ‘Swallow’ test and am awaiting the results re this.
CK LEVELS : currently (please remember that the data re these results) is based on the blood tests taken : JUNE 2023 : the CK levels >800 which is lower than last months (MAY) of >1000. HOWEVER of course those levels are still seriously HGH.
The underlying medical issues that are continuously expanding with new concerns that can cause me some really bad health and well being physical AND mental after effects; Often that directly or indirectly affect my mobility? My gut is one aspect that I have to take a lot of care over because it is so noisy and active re the next in line to be accompanied by the rest of the ‘wind’ section of an orchestra. Ah the ear (when not blocked with unwanted EAR WAX) apart from the physical aberration itself; of FLATULENCE?
At least I learned a valuable lesson when ti came to ie. BREAD, the one I found that gave me symptoms equatable to ‘IRRITABLE BOWEL SYNDROME’; believe me, it was one of the worst experiences gurt and bowel wise that I have had the misfortune to experience. MULTI GRAIN bread being the cause of such mega discomfort. ( Please note: This applied to ME and I am NOT naming the brand et Using seeded bread seems to have no real issues?)
I do NOT eat heavily PROCESSED foods. I want to make this clear. A sensible BALANCED diet of meat AND veg / fruit; has helped me a lot.
OK I am going to finish here for now... It will probably be a good ten days before I post my data et from the ‘break’ coming up. It will be interesting to see how I cope with the HEAT/ HUMIDITY. AMBIENT air temperature does NOT affect my overall body temperature when it plummets after a meal. The change re the ENVIRONMENT? Less pollution and air particulates contamination ?
MORE to follow.
I want to add a THANK YOU to all investing time in me and my situation to at least give me some balance re my health and well being / ANSWERS! : THANK YOU.
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UPDATE : July 5th : Overall somewhat ‘wrecked’. I’m gradually recovering from various tests / examinations that have been quite demanding on my physical capabilities or lack of. Pushing, pulling, movement and mobility; it is after that had taken place where the real discomfort and sometime PAIN, kicks in.
HEARING : My RIGHT ear lost about 60% of auditory capabilities. I was somewhat worried as the R EYE was suddenly bruised and looked like a typical ‘black eye’ with bruising and definite bleeding etc into the surrounding tissue. The RIGHT side of my face down to the ear and ear lobe lost some sensitivity, noticeable difference in touching the ear lobe or running my fingers along the Eustachian canal down to the neck etc. NO leakage lfrom the Eustachian canal into the throat et, NO tinnitus or INNER ear etc ? Definitely the OUTER EAR affected. Some thought on this had me thinking the it was quite possible for the Motor Neurone / neurone system had interfered with the system that controls dispersal of ‘ear wax’?? Clearing some of that actually restored some hearing to a more acceptable level. EAR WAX! Well, on reflection I had never really had issues up until now with that! NOW? A bit wiser to the FACT I will have to ensure I pay attention to my EAR WAX!
Which of course leads me to accept once again that I cannot control all aspects of my medical / physical well being. BUT thankfully with my medical knowledge and capabilities I can work around most difficulties I encounter BUT NOT without realising that I have another issue or issues to accept.
I have a travel trip coming up on transport where I will not easily be able to keep my legs elevated. The increased risk of DVT or even DVE ? I am going to take a reduced dose of ASPIRIN for three days. That should help me along with support stockings etc I can’t emphasize enough how a trip of over 8 hours can cause me serious issues re thrombosis etc At least the aspirin will help thin the blood and hopefully prevent blood clots forming. Of course the other risks can’t be ignored re what can happen if I have an internal bleed et
My trip away from home will include medical photography and other recorded data witnessed etc It will also be good re meeting up with family and friends etc as my future health and well being is somewhat compromised to the level where time could be running out. Thanks to Mary for escorting me on this travel venture. I would NOT have done this without her helping me to take on the challenges that lie ahead. Posting to this web may be delayed until after the 18th July. If I survive this, I will have a lot of updated data, photos, insight into how I am re my health and well being. Much better for viewers to understand how I am physically AND mentally coping. MORE to follow.
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.
Possible NERVE damage to the R EAR... click here for more infol.
___________________________________________________HMCGR elevated levels...
* myofiber necrosis leads to elevation of the serum CK, changes in serum CK levels can be used as a surrogate biomarker of disease activity and nearly always decrease substantially in parallel with improved strength. It is worth noting that some patients may have markedly improved or even normal muscle strength with persistently elevated CK levels [26]. Whether such patients warrant more aggressive therapy to decrease the CK levels and prevent chronic muscle damage remains unclear.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5836404/
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Immune-mediated injury to the muscle is directed against HMGCR or other antigens recognized by anti-HMGCR antibody. Attempts at myofiber repair results in increased HMGCR (or its mimic) expression and sustained autoimmunity with ultimate atrophy and degeneration of myofibers.
An anti-200/100 kDa specificity defines a subgroup of necrotizing myopathy patients previously considered to be "autoantibody negative." We propose that these patients have an immune-mediated myopathy which is frequently associated with prior statin use and should be treated with immunosuppressive therapy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3026777/
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