I was diagnosed in 2006 with rrms. I was able to walk with the aid of a stick, had very mild leg spasms, numbness and started to show signs of bladder problems. In a matter of a couple of years I was walking with either 2 crutches or a walker. I was on rebif for just over a year.
By 2010 I was in a wheelchair but still able to transfer. My mobility was still declining. After moving house with parents, my new neuro dr said that the rebif wasn’t working and we needed to attack more aggressively. So he put me on tysabri. When it came to review, it hadn’t made a difference and I was still deteriorating. I was also having tummy spasms which made going out in the car painful as I felt every bump in the road. These have been eased with medication.
So I tried mitoxantrone. The only positive after that treatment was that it reset my body’s thermometer. Before I was always cold. It was that bad it would be the middle of summer and I would be dressed in a long sleeve thermal vest, thick Aran jumper, gloves and head/neck scarf and still felt cold. Now during summer I can only wear a short sleeve top, but still have to have a very thin material over my arms as I am sensitive to the air. Mitox didn’t work as well as hoped and when I asked, the doctor confirmed that it was progressive. My MRI scans weren’t that bad either.
I continued to go downhill. Lost the ability to transfer on my own and have had to have carers since. I started to have numbness in my hands and my arms went very heavy. I am now 36 and have no/extremely little movement of my body. Thankfully I am still able to move my head, although my neck sometimes hurts and feels like my head is too heavy. I tend to stay in bed these days. 1 - it’s more comfortable and I don’t experience pain as much and 2- it sounds a bit backward but I have more independence. I can watch TV or am able to use a computer and can rest when I need to. Spasms were that bad in the bladder I had to have a supa-pubic (sorry if spelling wrong) catheter with botox injections to stop the spasms. (For those wondering the supa-pubic catheter placement makes personal cleaning 100% easier, changing catheter is easier and botox means no spasms which means catheter stays in. I would recommend.) I am now taking a 3 day course of steroids every 3 months.
I was referred to London for bone marrow treatment but was declined. I tried to get on a bone marrow trial in Bristol which said it was for progressive ms yet I was declined again. I have been looking at stem cell treatment elsewhere and have been accepted for treatment in California. But looking further at reviews and comments, there are so many people giving conflicting views I don’t know what to do. I have emailed the procedure to my neuro dr and a few other doctors, to see their opinions. I know it’s my decision at the end of the day but can anyone help make this decision a bit easier or suggest any alternatives? (If needed I can provide a link detailing the treatment I’ve been accepted for.)
There is still no readily available treatment for PPMS. Ocrevus is still awaiting NICE approval and even that just slows disability down a bit. I’m not even 100% sure about HSCT trials in the UK for PPMS patients and who’s doing it (?) it’s still at trial stage for PPMS tho.
Wit regard to other products, a few people take LDN (low dose naltrexone) but most of us had to fund it ourselves. There’s also Biotin that some people have felt helps, there’s a good group on facebook to find more info on.
I’m not on anything but I’d jump at the chance for HSCT! I was diagnosed with PPMS but kicked up, did a trial that didn’t pan out but had a year on Tecfidera. Currently I’m not taking anything and I’m back in the PPMS camp - truthfully, I still believe I have PRMS (progressive relapsing).
As you know I was the first UK man in Moscow for HSCT in June 2014. It is my opinion that HSCT doesn’t particularly work for ppms, although there are a few people who feel its worked for them. It is showing success in newly diagnosed people with rrms. I went to Moscow with an edss of 6.0, 2 years later I was assessed at 7.0. My consultant in London thinks I may have progressed to prms.
sorry to hear that you’ve progressed to EDSS 7, I’m at least a 6.5 now as I need crutches even indoors now. I picked up my SAFO last week and despite trying lots of different shoes, it seems I’m normally a 3 but I’d need a 5 for the SAFO to fit in asmy foot is also quite puffy. I’m in so much pain after trying to persevere that I’m going to have to call the hospital and give it back! The only glimmer of hope is that the physio did try a musmate out on me and that was amazing, despite a bit of a sore shoulder later on - it was a surprise but I can’t thank my physio enough, she only dug it out because I grumbled that I feel like my hip flexor is on strike.
Poor old Rob had to rub in magnesium oil earlier for my leg & hip, it always makes his hands sting but I’m just dragging my leg right now and in a surprising amount of pain
i’ve been following the Bristol stem cell trial, although not much information is available . Why were you turned down, and do you know if any ppms on the trial is benefiting? The trial doesn’t complete until next year. It would be good to know if there is hope!
i was turned down for both London and Bristol because I couldn’t walk around 20 yards. Seems a little strict for progressive but I think it’s really due to me being unable to care for myself and having to rely on others.
i haven’t seen any info on trials but i have heard that 1 has died from complications having this chemo/stem cell treatment. My GP has told me that he would go down the route of having chemo first. still waiting to see what neuro consultant thinks but unfortunately it looks like California might be a no go.
it makes me wonder that if the stem cell harvest from fat tissue obtains such a higher number of cells than bone marrow, i am so surprised that a trial or even research hasn’t been started to look into combining this type of harvest with chemo. i would’ve thought there would be better results/renewal of damaged areas having obtained more stem cells to start with. If anything it would be easier on the patient having a mini lipo instead of the horror of bone marrow harvest.
i’ll keep hoping but I have a horrible feeling that for trials my body will be classed as being too far gone. fingers crossed for them to find something soon.
I cant really offer any advice or draw on any experience with stem cell therapy but just wanted to wish you luck with getting the treatment you want. You sound like u have had an awful lot to cope with.
I cant really offer any advice or draw on any experience with stem cell therapy but just wanted to wish you luck with getting the treatment you want. You sound like u have had an awful lot to cope with.
i don’t think that Bristol trial uses chemo, although in HSCT it seems that the chemo is the cure and the stem cells are ‘only’ to rebuild the immune system.
i think that Ocrelizumab will be available here as soon as approved in the U S. At a price of course!
My husband is on the Bristol stem cell trial - it doesn’t involve chemo and by all accounts there aren’t that many people involved. He has had the second infusion and is hoping that the first one was the placebo as his symptoms certainly have got worse - my impression is that it will be many years before any results will be officially published as they are still recruiting and he is 2 years in !!
My husband is on the Bristol stem cell trial - it doesn’t involve chemo and by all accounts there aren’t that many people involved. He has had the second infusion and is hoping that the first one was the placebo as his symptoms certainly have got worse - my impression is that it will be many years before any results will be officially published as they are still recruiting and he is 2 years in !!
Ppms 10ish years. Tried all the treatments on offer. Wheelchair and can do the toilet transfers. Looking for some light somewhere! I live rural so access out side limited unless I have assistance transferring from wheelchair to outdoor. You are not alone - think about what you do, the fat stemcell is a new one, so I cannot comment. GOOD LUCK.
- my impression is that it will be many years before any results will be officially published as they are still recruiting and he is 2 years in !!