angelbum 02/03/15
Last reply 3 years ago
Paediatric and Pubertal MS

Many people on this site I’m sure will have had symptoms since there teens or childhood . I would Luke to hear from you also to my knowledge when I was a teen I don’t believe many drs were aware of the symptoms of ms and how it can affect you .

I believe many remain undiagnosed till this day ! Or have taken years to be diagnosed if your one of them can you please share your thoughts and opinions ?

Also if you believe your ms did start in childhood .

What were your first symptoms back then and did anyone get diagnosed then in there teens in the 90s ?

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angelbum
3 years ago

COME ON GUYS THERE MUST BE SOME OF YOU THAT MS STARTED IN CHILDHOOD . ????


angelbum
3 years ago

Oops bad spelling mistake on subject . How can I fix @stumbler


stumbler
3 years ago

@angelbum , how’s that? 😉


angelbum
3 years ago

I think that’s better ha ha


tabbycat
3 years ago

I went to my GP in my teens because a friend had been diagnosised and I was tripping over my feet- he said I was just being silly.


Gav
3 years ago

I was just massive;y overweight ( 19 1/2 stone overweight) as a teenager so I simply put any of my problems from that time down to that.


graham100
3 years ago

I had lots of back pain. Right knee numb. I put it down to my job. Started circuit training late 20s and all the pains seemed to go as I got fitter. All the back pains are now back, plus extras. Stopped training about 8yrs ago. Diagnosed 3yrs.


angelbum
3 years ago

Yes back pain has been one syptom I have been bothered with since around 18 years old . Still to this day I’m in excurating pain and painkillers don’t seem to touch it much ! Away to try a chiropractor tommorro really need some relief . I feel so twisted !


cameron
3 years ago

Hi @angelbum, re: your bad back. Have you been tested for vitamin D deficiency? I hadn’t made the connection, but soon after starting on VitD supplementation, I realised I was taking fewer painkillers and anti-inflammatories. Three months down the line, I wasn’t taking anything because the bad back had gone. This is after four years of constant pain, discomfort and reduced mobility. My GP was reluctant to have me tested but I pressed (having read about how likely MSers are to be VitD-deficient) and was found to be deficient, bordering on the very deficient. The GP actually rang me at home to say how surprised she was and would I please call in to the surgery for a VitD prescription.


graham100
3 years ago

Hi @cameron. How much vitD are you now taking? I take a 5000iu cap. Each day for last 8months. Not a lot different??


cameron
3 years ago

@graham100; my GP’s prescription was for low-dose – can’t remember exactly but certainly not over 1000iu. It was on this dose that I began to feel a difference in my back. I talked over the VitD-MS connection with my GP, who admitted to knowing next to nothing about it. When I asked for it to be put on my repeat prescription, she said she’d be happy to prescribe it on recommendation from my neurologist. Fortunately he was happy to do this – wrote to her saying that a daily dose of 5000iu was ‘appropriate for MS patients’. Now my prescription label reads ‘as per neurologist instructions in UCL for MS’. What I don’t understand is what the neuro told me when I reported my near-miraculous cure: he didn’t seem at all surprised because he said that it was well known that VitD improves muscle strength. So why isn’t screening for VitD status a routine procedure? Surely, mine can’t be a unique case?


cameron
3 years ago

@graham100; my GP’s prescription was for low-dose – can’t remember exactly but certainly not over 1000iu. It was on this dose that I began to feel a difference in my back. I talked over the VitD-MS connection with my GP, who admitted to knowing next to nothing about it. When I asked for it to be put on my repeat prescription, she said she’d be happy to prescribe it on recommendation from my neurologist. Fortunately he was happy to do this – wrote to her saying that a daily dose of 5000iu was ‘appropriate for MS patients’. Now my prescription label reads ‘as per neurologist instructions in UCL for MS’. What I don’t understand is what the neuro told me when I reported my near-miraculous cure: he didn’t seem at all surprised because he said that it was well known that VitD improves muscle strength. So why isn’t screening for VitD status a routine procedure? Surely, mine can’t be a unique case?


tracyd
3 years ago

Perhaps it’s something to do with the timing of taking Vit D supplements. I’ve just had a look at the write ups and one of the things it says it does is ‘supports a healthy immune system’ which freaks me out a little, one thing I’m sure my immune system doesn’t need it a little support to work harder …. it needs a damn good beating so it lays off my CNS 🙁


angelbum
3 years ago

@graham100 hi yes I’m vit d deficent ! The Drs only took 15 years to diagnose this . Joke

Thanks for information on 5000iu I’m about to increase now

Living in Scotland we don’t get much sun here x


graham100
3 years ago

Hi angelbum. Won’t ask who gave you that name. lol. I get lots of sun or did. Till I started struggling with the heat. As you can tell by photo. Spent lot of time in hot places. This year might be pushing it. But booked so going. April & July. Still I keep taking VitD. Can’t OD on it apparently???

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