MS society you tube story Junior Giscombe

Everyday living
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Well thank you MS Society for sending my daughter into a total panic over my MS. I had her on the phone yesterday in tears. Because she has used you tube to learn about MS this was flagged on here channel.

Story of Junior Giscombe R&B singer, who was married to a lady who got ms at 25, and their daughter had it at 24 and both died very soon after diagnoses like around 5 to 6 years. He is talking about PROGRESSIVE MS.

I have been diagnosed with PRIMARY PROGRESSIVE MS, and its known it tends to start later in life, although younger people have had it start early.

Are we talking about PROGRESSIVE MS or AOS, AGGRESSIVE MS classed virtually as a malignant form of MS which hits people around the age of 24 and progressive and life span is short.

I watched it and it make me feel sick to be honest. Yes terribly sad that 2 people in his family had MS and died with it, but really I feel this is counterproductive and scary for others who have families with MS and for those who have maybe recently been diagnosed with Primary Progressive MS.

PPMS

THE disability scale.

4.0: A person is able to walk without an assistive aid, such as a cane. They are able to stand or walk around for at least 12 hours a day without overly reduced function.

The authors of the study in the Journal of Neurology, Neurosurgery & Psychiatry report that the average time that it takes for a person with a diagnosis of PPMS to reach a score of 4.0 is 8.1 years.

The time that it takes to reach 8.0 can vary, but on average, this takes about 20.7 years, the authors found. The speed at which symptoms progress is faster in people with PPMS than in those with a relapsing type of MS.

Juniors daughter reached number 10 in 5 years, which would indicate a much more progressive form of MS i.e. AOS. His wife was the same.

I am so disappointed with this youtube presentation, it is scary and frightening for those who have family with MS.

My daughter now doesn’t believe me, and is scared for her own health now too, as she knows any disease has a chance to be contracted genetically. I have asked her not to point this you tube story to my other daughter who is having health issues.

Am I being over dramatic i dont think so, as it was my daughter who was upset and now thinks I am going to leave very soon.

What do others think or have you not seen the video?

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sorry above is between 4.0 and 5.0 on the scale is five years.

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My cousin died of Lukemia at 10yrs! my dad of Prostate Cancer & Kidney Carceanoma at 50yrs! My mil at 103yrs! . We are all mere mortals in this world with releative short passings in it.

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Hi Anon,

Primary Progressive MS is not a malignant form of MS and you certainly can’t ’ contract’ it the way you would measles or mumps; its cause is a complex mix of factors and ultimately, its just a label that denotes an absence of the typical relapse-remit pattern that is the commonest form of the disease; some people will progress to a secondary phase, and then others to a primary phase; some may go through all three stages, or get stuck at one. It isn’t commonly the direct cause of a person’s death; rather, things that are related to the disease, such as urinary tract or chest infections, that tend to cause demise, which is why its especially important that you take good care of yourself on the infection front - make sure you have your flu jab and have your urine tested if you suspect you may have an infection, because it can make symptoms worse; clearing up the infection can improve matters.

There are many wonderful people on this forum living with PPMS, and managing to do so successfully - you should look them up; in doing so you may find that neither you nor your daughter should panic at Junior’s story. While there is some evidence that it can be familial, this too is also very rare.

For what it’s worth, I have a form of MS called Tumefactive MS; the lesions in my head look like low-grade brain tumours; it is also secondary progressive in nature. The two combined can be quite a handful at times, but I don’t let them rule my life or consume me with worry. There are better things to do out there than allow this shitty disease to dominate your life and swallow you whole. personally, I don’t pay any attention to disability scales and scores - what’s the point? they are a doctor’s view of how you’re doing, not your own, and I don’t want to worry about what they happen to think of me. I just want to get on living the best life I can with the challenge of a disability added on, that’s all.

Most importantly of all, try and remember that we are all totally different even though we have the same disease. Many of us live with it for years. Figures are just figures, statistics are just statistics, and the internet is a terrible place for panic stories. Don’t compare yourself, or your family situation, to any of these things. If you are truly worried try and see your MS Nurse, if you have one, or get a referral to your consultant; take your daughter with you. It may help ease both your concerns.

Don’t be too hard on the MS Society; sometimes they have to tell the tough stories to get charitable attention and raise funds so that they can support vital research work. They don’t mean to cause panic, but rather just draw attention to some people’s realities, which are often vastly different from our own.

AV/Nia.

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artic vixen, I am fully aware of all the above but why cant they choose a story which is not so much doom and gloom. Its so rare for anyone to get PPMS and 24 and then die by 32/33 because of their MS. it shouts out as scaremongering, and this was sent to a PPMS group on facebook and everyone agreed it did not match in anyway how PPMS is.

I have no issues and i know all about PPMS Its kind of a situtuation i only share what i think i need to share with my family as having the disease is hard enough for me without scaring the bejeebers out of them.

Juniors wife and daughter well they could have had pneumonia or something else going on or a septic UTI anything, he made it sound they passed away because of their MS. MS does not kill you the outlaying illness that come with it can kill you like anyone can die of pneumonia or sepsis without MS.

I still stand by what i said i think this is a scary account of MS and i can be counter product. they dont need to preach us who have it what it can do to us, we know, its not me i worry about its the young people starting journeys, or people who have MS in their family who may feel scared by it.

That actress/model Selma Blair advocates MS as she has it and she is inspiring and makes me want to try harder, this would just make me want to curl up and forget life existed.

Selma blair fights hard and is a wonderful advocate for MS. there is no need to use negative stories over this especially ones that would be unusual i.e. 24 years old dead by 30 because of MS. PPMS.

thanks for your input though. daughter has still not calmed down as yet. by showing someone fighting and using all the research and taking the NEW medication is more inspiring then saying you found your 30 year old daughter had passed away on a couch after having MS from the age of 25.

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Which is why you never do a Dr Google! Sorry Anony mouse, but your daughter should not have taken you tube as gospel. When I was diagnosed, the only person I knew that had it had died within 3 years. Another lady diagnosed at the same time was doubly incontinent in 3 years… it really is a different story for every single person on here.

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Are you referring to MS Society UK?