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New Diagnosis of PPMS

Hi I’ve had MS for many years. About 15 years to be exact. I was dx with RRMS first and was put on copaxone. I was on this for about 13 years and every time I had a MRI I had no lesions. This went on for years. I went from no adaptive equipment to a cane. I used a cane for years. After that I needed to use a manual wheelchair for long walks. At some point I was in a vehicle accident and was hit in the rear. In one week I began having swelling in my extremities and was in a wheelchair. I’ve been in a wheelchair ever since. I have been through so many neurologist because they was not listening to me. I finally settled with a doctor at the University of Miami. She did blood work, a radiological LP and MRI’s. Based on my symptoms and the LP’s I was dx with PPMS. This disease seems to be affecting me mostly from my bellybutton down. Yes I have some numbness and tingling in my arms and hands but I can no longer even stand. I had to get a colostomy and straight Cath. I have no lesions and this bothers me. How can I have PPMS with no lesions? Anyone else have this issue? I will be getting my second dose of Ocrevus November 12, 2018. I still cook, clean, shop, drive a adaptive vehicle. I do everything everyone else does but from a wheelchair. Terrible back pain and spasms but take baclofen for this. There is so much more but I’m giving y’all the condensed version. Any feedback or advice would be appreciated. Thank you in advance.

you had rrms so it will be secondary progressive ms now.

at least that’s the way it’s seen in the uk.

i have never heard of anyone with ms having no lesions.

you are unique!!

i’m very impressed with all that you manage to do.

carole x

What’s, ocrevus?

Any one taking Ldn?

LDN was frowned upon 5 years ago here in UK but has been obtained by private prescription more often since then.

My own GP is opposed to LDN but a neighbour of mine obtains it from USA via internet. She suffers from M.E (not M.S) and states much improvement to her chronic fatigue is remarkable.

My GP has prescribed ldn on the NHS since 2004 and my only regret is not taking it sooner.

https://www.ms-uk.org/sites/default/files/Choices%20-%20Low%20Dose%20Naltrexone%20PDF%20Version.pdf

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Ocrevus is the drug with the trade name Ocrelizumab. It was given a license for RRMS and PPMS in the U.K., but the lovely folk at NICE (National Institute of Clinical Excellence) decided not to allow it to be prescribed on the NHS for PPMS, only for RRMS. Which has pIssed off an awful lot of people with PPMS no end, it being the first and only DMD for people with primary progressive MS. You’d think people with RRMS already have their fair share of DMDs.

It does have a license in the USA, which is I assume where the OP is from.

Sue

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PPMS is diagnosed first no-one gets diagnosed with it after having Rrms it’s usually spms . Marie x