Jacqueline
Forum Replies Created
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Hi Jilly, wonder how many have the Primary Progressive form, seeing’s that it is one of the rarer with only 10% – 15% of people supposedly having it..and yes i happen to be one of them…
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Depends on how we view the figures…” there are approximately 7.673 billion people in the world. Of those around 2.8 million have been diagnosed with MS ( sounds a lot. ) Based on that data less than 1% of the population has MS ” ( doesn’t sound a lot )
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I do attempt to eat gluten free ( breads – cereals )…not sure it makes much difference…
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Looking back, nothing out of the ordinary happened to me until i reached 61 & a half, things i could not explain, apart from ” something strange is happening to my walking “….then finally diagnosed age 64 with PP-MS…i am now 70..
Jackie..
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Going for my second corona virus vaccination this morning, the Oxford AstraZenica, same as my first…leaving in one hours time UK…
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I am not sure we will ever find a cure for MS, nor prevent MS, until we-they find out what causes it in the first place…
Find out what causes MS in the first place…is it something we have done to our own body’s over the years, was it the shingles, the herpes zoster…until they know what causes something how on earth can they ever find a suitable cure…We have to find the answer to the cause…
Jackie..
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John…
… oh yes, our ” gifts ” just keep on coming, dont they…what next is on my PP-MS list, and to think i had no issues, no MS signs, until age 61 & a half…
Jackie…
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John, only just seen your posting to me…I have suffered deep cutting folds in the ankles, not so showing now since rubbing Dermol 500 onto my damaged skin lower legs…No signs of wart like growth nor no signs of fluid leaking through the skin…
Something new to deal with is my tinnitus, oh the joys ” NOT ” of our MS…what next is waiting around that corner…
Jackie…
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John… two separate posts but just the one of me…John, the mind boggles at these pen pushers who sit inside these offices and make these rules…
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Yes i to suffered with cellulitis infection just a couple of months ago at age 69, a couple of courses of antibiotics and penicillin eventually got rid of it, mind you, took some time to get rid of it…another added nightmare i had to deal with on top of my already PP-MS…Now i am left with ballooned swollen legs from the ankle to midway up..
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No thank you…mind you, maggots ( help clean wounds by feeding on dead tissue ) leeches ( bloodsuckers, provide a lifesaving vacuum effect that helps doctors clear away bad blood and reattach severed appendages ) and cancer fighting scorpions are all what scientists are using, supposedly effective techniques…Hm, one day they might become our norm..Is this classed as alternative medicine – treatments..
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In three years time i will have to go through the whole process again, photo, money, form filling etc, etc..
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Not been refused but, although i made it aware i have Primary progressive MS which means as it read ( it is progressive, clear enough, will just get worse with progression ) I think the wording is clear to those who issue these Blue Badges ( UK ) so why do they run out in three years, do they honestly think a miracle will happen and i will be cured, and hey presto, in three years time we will not be needing to renew our Blue Badge, crazy when with MS we instantly get one in the first place, no questions asked…I am half way through my first three years baring in mind i was diagnosed at age 64, i am soon to be 70…
Jackie..
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John…healthy hair – skin and nails are the least of our problems but, good to know there is something out there on the market that will make us look good, if not make us feel better…yes do keep up your ” luxurious ” look…
Jackie
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Ed…i dont have an MS nurse but i did get a telephone booked call with my new Neurology Clinician but of all the things i had written down to talk to him about my deteriorating illness, the important questions were not on my mind nor did he mention anything concerning my question, guess he was not aware that i will be called up near the same date he will be booking my MRI scan, and of course i have no idea how to get to speak to him as he is attached to a few private hospitals, and this was done as a booked telephone only appointment where i had to wait several weeks for my turn…If we never had this Covid it would have been a face to face consultation…
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Question, do we know the safety of a mixture of Gadolinium with either Oxford AstraZeneca – Pfizer BioNTech – Moderna, these are the three now being rolled out here in UK…When the time comes for my vaccination which should be around the same time i will be booked for my MRI scan, i will not know which of the three i will be having, we dont get to choose….Do we know what if any tests have been done on these mixtures inside our bodies…
Jackie
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I will be booked an MRI scan, told will take place in a couple of months time when our UK Pandemic Virus calms – slows down, they are currently at their highest at January 2021…My question now is if i am to have gadolinium injected into my arm March – april, what dangers might i face as and when i get called up possibly late March – April for one of our three Covid vaccines, not knowing which of our three i will be given as we cant choose…Do we know if tests were done as to the safety of Gadolinium still floating around inside our bodies mixed with any of our varying three covid vaccines we have going here in UK…I have Primary progressive MS, i am soon to be age 70, diagnosed at age 64…
Jackie
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Ed, thank you for my welcome back…I am not doing well, what with the stress i have had to deal with since the sudden loss of my partner – hubby at age 74, 19 months ago, plus my move 3 months ago has, is taking its toll…Oh and did i mention that i found him dead 4 years after, to the exact date 11th April i was diagnosed with PP-MS at age 64..I will be 70 next March…
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<b>Ed, thank you for my welcome back…I am not too good, stress since the sudden loss of my partner-hubby age 74, 19 months ago, plus my move 3 months ago, has – is taking its toll…Oh and i did i mention that i found him dead 4 years after to the exact date 11th April that i was diagnosed at age 64 with my PP-MS…I will be 70 next March..</b>
Jackie..
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I make sure i shower-shampoo my hair keeping my head as straight as i can without bending the neck and head forwards, as if i was to bend my neck, my head forwards, i can guarantee Lhermitte’s ( sign – phenomenon ) will have me down on the floor, like it did once when i was showing the shampoo off and i briefly closed my eyes as i was doing it…
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Yes ” Invisible Disease ” Day, as this is exactly what our MS is to non MS’ers…they simply have no clue as to realy what is going on inside our body…what the insides of our body really feels like to live with on a daily basis..
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My answer has now changed, my circumstances have changed since I lost my partner suddenly to a heart blockage…I now would thank God for hearing my prayer and answering to it in taking my PP-MS away from me…then i will concentrate on the rest of my life whatever that may be…hopefully i will have some form of actually wanting to be LIVING again…and not wishing i could be with my partner of 20 years age 74 when he died 11th April 2019…
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Debi, I hope so, as at this moment in time, that I lost my partner less than three weeks ago, I cant for the life of me see what the reason was-is…but yes, have always believed in ” everything happens for a reason..” although I cant see the reason he was taken from me on that fateful day, as i know he would have never have left me…I am sure neither of us expected on that morning, what was soon to come-to happen..
Jackie..
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Trust me, I have just lost my partner of 19 years, 17 days ago, ( he died at home unexpectedly in his armchair after coming home from taking our dog to the pet groomers, ) and so far I have lost 15 lbs of weight, ( 1 st -1 lb, and I have primary progressive MS. Trust me, lose someone close to you, your weight will automatically just fly off.
Jackie