The Root Cause ?

Could there be links genetically with CFS / fibro & Multi infart dementia as my Late Parents, one a pharmacist of a pharmacist ,was into the alternative & homeopathic before it became the norm in the 60s

.He had a football teams Sports Specialist who used TENS machines before many used.I also have found ultrasound beneficial .He kept Mother mobile till he died from stress of having to pick her up [ heart valve] .

I suspect many of the problems of CFS could be vascular related to Dementia multi infart/alzheimers as my late mother was hoisted everwhere, her speech & cognition gone she couldn't even swallow easily or see [ cateracts] she had had polymyalgia rheumatica [ auto immune - testing only?] so I thought it was related as we were never officially told .They too were refused early diagnosis so when she fell [ over 10x] the Ambulances did not take her in .

When she needed Nursing Care she was assessed as normal because she smiled sweetly & was only challenging when her other medical problems not addressed appropriately ie: teeth ,skin , feet utis were out of control .

The treatment of utis is a disgrace as is not looking for the cause initially . I suspect I am a guinea pig if not referred where policy not restricting .

Also the childhood illnesses have a lot to answer for .Yet antibiotics that have assisted in the past are now directed to be witheld allowing sepsis /pyuria to become a serious issue which the NHS is addressing in A&Es by no testing? Do they want to take us to an early grave??!! Are Doctors & Dentists allowing them selves to be directed having not taken a hippocratic oath .Some have said their hands are tied in A&E/Walk inClinics - not dealing with the chronic - blaming ?? I wonder why?

Yet as soon as became a risk changed it for the last few months.Were they directed?

5 Replies

  • Hi skybluepink

    I am so genuinely sorry to read of the suffering and struggling that your late parents endured.

    There is medical evidence from research that some cases of Fibro could be hereditary. I have pasted an excerpt below from the *MedicineNet cache:

    *Increasing evidence supports a strong genetic component to fibromyalgia. Siblings, parents, and children of a person with fibromyalgia are eight times more likely to have fibromyalgia than those who have no relatives with the condition. There are several genes that have been suspected to play a role in fibromyalgia.18 Jul 2016

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • Thanks .I am quite sure there is and I can prove it is hereditary with a diabetic, heart, auto - immune connection, but the National said they lump it in with Alzheimers.I think there was a genetic connection on both sides of my family .Is there a genetic test?I don't show up on many tests for some reason too .This has caused PAH to be left since the MI & oedema since pubity because of hormonal imbalances as well .My chronic utis acute 3 weekly are a clue .Mother with severe MID died of one.

    Eventually they did see me to do the dyspraxia test which was same as when on my MA 2001 - coordination , location ,sequencing.They also overlooked heart failure symptons before the MI cardiac arrest .I did suggest a meeting with us both when she was alive but they didn't want to know ?!!

    I worry though they will try to gain access to myRecords when I die .No way if they can't research when alive?Causing constant delay & stress from them blaming it on lifestyle ??!!

  • Would you believe am having a lot of problems having multi conditions managed in primary care because of policies,procedures & structure of NHS & hospitals regarding the chronic .

    Just looked at a letter from a Professor at the National who I saw 2 months ago who is a consciousness specialist with a sleep clinic as CPAP machine not effective

    .I said I would like to have investigation for vasculitus [ central nervous system] specialist and do you know what the person he suggests does , why a dementia specialist but he is not telling me that .

    The Prof I have been seeing since my 30s re: urodynamics [ utis] & spina bifida also was doing research he never told me about spina bifida the uro & neuro. Yet when had the spinal spasicity spasms [ weak heart pumping ?] He knows without antibiotics utis can cause sepsis anywhere in the body ??!! I have the graph and A&Es & Walk in clinics don't test What is going on?

    it was not his remit to refer on .When I had a short private consultation they asked for referral to NHS as worked there too ,he persuaded the GPs not to refer .I wonder why ?

    The plot thickens re: the Records ??!! I have been saying they should be signed & agreed to by the patient for access, & that they are correct & true .Often they are not and they refuse to change by ignoring .

    The Royal Free Neurology department who exchanged a cardiac appt for their knows had abnormal EEG from when spina bifida found there in 1969 but has Watchful Waiting on access to appts ?

    However when had MI they hastened me, via their security ,out the next day knowing lived on my own with no-one there with no plan of action a la NHS Constitution.

  • Hi my friend

    I have just been diagnosed with Type 1 diabetes at the age of 53. The specialist said that mine was more than likely hereditary as my parents were, and my siblings are also diabetic.

    It is ironic that you say your C-PAP Machine is not effective, as I have had one for 4 years and this last year it has done absolutely nothing to help me? I am also suffering with slow heart failure which is another hereditary trait.

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • Thanks .I too wish you the best . Regarding the CPAP why are they having admin [ technicians on remits ] in charge when can't address these issues of diagnosis especially if you have dysponea mobility problems and are solo.Do you have problems with anaesthetics - dental ? I am now having problems accessing the Restorative depts of the dental hospital who appear to have decided to hide or not be contracted in?Even when offer to contribute?I suspect this may be the initial cause that the NHS pretends is lifestyle & I been having since 5 yrs old.

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