Hi, i had an mri scan and then a lumbar puncture before a consultant diagnosed ppms in 2014. Then i didn’t think i had walking problems just tingly fingers and tiredness. My lumber puncture actually made my back pain better for a few months, just learning to live with it now. Look into oxygen therapy, get this weekly now. You get a recharge 
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Have you been tested for Lyme disease?
Me, Carol? No, never. Don’t have any of the major symptoms.
Many in the US now believe MS is caused by Lyme disease. Just thought I would pass along that info.
Hi Graeme,
I hope your treatment is going well.
During your search for information about MS and possible treatments have you come across Dr Terry Wahls, the Swank or Paleo diets, or Neufit (or any other electrical stimulation device)?
Regards ……. Tony
Hi Graeme (and everyone else on the thread),
How is your trial going?
I have just started Frampridine, I don’t feel it making much difference, but, if it helps a bit, sod it, i will get it (i have to get a private prescription however and it’s not cheap each month 
)
My symptoms, I think started about 5 years before the diagnosis, first with UTIs and Bladder controls, and then progressing to toe curling and then progessing to balance and drop foot, then got diagnosed about 6 months after that (June 2023).
How are you doing?
My neurologist won’t prescribe Fampridine because of the potential side effects. Have you had any adverse reaction?
I have also started electrical stimulation treatment to wake up the nerves and muscles that have stopped working. Very positive results so far. Its a new device from a US based company called Neufit. It uses Direct Current which allows quite intense pulses and can be directed to work specific muscle groups.
About eight or nine years ago letters from my consultant to my GP stopped saying that I was RRMS and instead had me as probable SPMS, and then by five years ago they just said SPMS. Personally I think I had PPMS with relapses all along, but I don’t think the categories really mean anything apart from when it comes to deciding whether you’re eligible for treatment.
I suppose you could argue that you’re either progressive with relapses or progressive without, and that depending where on the continuum you sit it’s either primary or secondary. I think you should try to decide which of the two treatments you think is best for you and convince them to say you’ve got the type of MS that is eligible for it. Hopefully if you push hard enough they’ll just roll over and agree with you for an easy life.
Not sure if that’s any help at all!
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Hello - Iwas 56 when I was diagnosed with spms in 2012. Like you I had a sciatic issues for years, and a lot of sprained ankles over the years after trips and falls. I was involved in musical theatre for +30 years. Most of my “accidents” were put down to being a clumsy lefthander… When lHermittes sign started to be an issue and my left leg started dragging I finally went to my doctor who took bloods and referred m to a neurologist. Blood tests indicated no folate and zero vitamin D. My left side steadily got weaker to the point when I couldnt hold a pen or a cup. I was lucky - apart from odd sensation and annoying leg jerks at night - and the odd “hug” - I’ve had no pain. But the scariness of being diagnosed with MS did send me into a deep depression for over a year. When I finally surfaced (thanks Sertraline!) I decided that life really is too short to spend it waiting for a relapse to come along and spoil my partt. I took up aquarobics and work out for 45 minutes 5 times a week. 6 years ago I decided to learn to play saxophone and am now a member of a band - and I can write and sew and paint again! Yes, I am pain free, luckily, and I walk on 2 sticks. I hav been offered DMTs on numerous occasions, but for me the potential side effects outweigh the potential improvement. I am entering my 70th year. I can no longer dance or run after my grandchildren, but Im still able to enjoy many aspects of my love of music and crafting - just a little more slowly than before. When I was first diagnosed, my MS nurse told me I wouldn’t be able to do so many things I loved - which probably contributed to the depression. My meds consist of one 50mg “happy” pill and daily Vitamin D. Yes, there are distressing things with SPMS (bladder\bowel issues from time to time), but on balance I’m pretty much who I used to be. Courage, mes braves.xx
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