Last reply 1 month ago
Thank you for all the insights

Hello this is my first post, although I have been following the forum for several months. I was diagnosed in January and my MS nurse recommended the site. I want to say thank you to you all for all the support you give to each other and new people like me and loads of information that I have picked up from here.

Especially during the early days of the COVID pandemic, it was invaluable reading Dominic S’s posts and links to Prof Gavanoni’s sites. I have also really enjoyed watching many of Aaron Bosters’s videos and the MS reporters’ interviews.

I am 63 and fist suspected MS almost 10 years ago but had problems getting referred back to Neurology after the first investigations were inconclusive in 2012. Unfortunately after several falls and worsening mobility, I did finally get the referral. I am waiting to hear the type I have, although strongly suspect it’s SPMS. I’m taking a combination of gabapentin and baclofen for my stiff legs but they don’t seem to be helping. If SPMS is confirmed I’m going to ask about participating in a clinical trial if there are any underway at the moment for SPMS. Is anyone else involved in an SPMS study?

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watsoncraig
1 month ago

Hi @ritam πŸ‘‹ I have progressive but mine is PP, I hope you find out soon which type you have but remember you are still you and forget the word β€œcan’t”, you just β€œdon’t” or β€œno longer do” certain things. Stay positive and keep smiling πŸ˜ƒ


vixen
1 month ago

Hello @ritam, welcome to Shift. Glad that you have already found it useful. Is the research you’ve been doing on Siponimod? If you enjoy research, have a look at remyelination. I believe this offers the greatest hope for us all on the horizon. Yes, the Boster/Giovanoni/@dominics combo was a massive support through Covid as Dr G was liaising with his Italian counterparts and getting the last advice on how Covid was affecting patients with MS in Italy, so this was priceless info. I hope that you have lots of support around you. Keep posting and stay connected with your new MS buddies!


stumbler
1 month ago

Hi @ritam .

Individually we might be weak, but together we can be strong…………. πŸ˜‰


ritam
1 month ago

Hello thank you all so much for your replies to my first post – very much appreciated.

@watsoncraig yes I have learnt even before the MS was diagnosed, to concentrate on the things I can do rather than can no longer do. In some ways it was good to get the diagnosis as it meant that I could finally access some support from the MS team – the MS nurses have been great and although there is only treatment for symptoms, I have had virtual physio appointments since the end of June.

I find it very comforting to know that I am not alone with dealing with MS, so I agree @stumbler about being stronger together. As supportive as my friends, colleagues and family are, I do not know anyone else with MS to talk to. Hence this forum provides the opportunity to share experiences and support one another.

I have read about siponimod @vixen and if I have understood it correctly there is a European licence for it but it is not widely available across the UK. If I do have SPMS, the consultant suggested that there would be no treatment. That’s why I would be willing to take part in trials – nothing to lose as I see it. Remyelination and neuroprotection do seem to be promising areas for new research. I hope the advances will come soon.


dominics
1 month ago

@ritam – Hi there and thank you for your kind remarks. I am resurfacing after an all-consuming training regime for bit.ly/MS3SDW –
For what it is worth – the caveat that it is a harder sale at 63 – I’d argue fiercely to be classed as RRMS until events prove otherwise. I’d suggest that it may be rather lazy, you’re older so it must be, thing to do.

If your Doctor is remotely com0assionate they will do what is done informally and off-the-books so to speak and keep you recorded as RRMS for as long as possible in order to allow you to access the widest range of treatment options.

Not knowing your circs this may be well wide of the mark and if it is I apologise. I have also had success is asking sweetly but firmly that a full reason for the diagnosis is made in your medical record detailing the medical reasons why they have chosen to go down a particular path.

There is also an MS Reporters series on clinical trials. This is one of the series https://www.youtube.com/watch?v=TxdobDZIZY8

clinicaltrials.gov covers all trials of any significance that are running around the world. Get in with the MS Nurses. Become a great fun guy/girl to know. Put them on your Christmas card list (I’m now on theirs now!), send the odd choccies. they are your route to everything and can go to bat for you.

But, if poss, insist they treat you as RRMS until there is concrete incontrovertible evidence to the contrary.

Best of luck. Dom


kristisue
1 month ago

I have enjoyed reading your posts. I have been diagnosed with RRMS and have been taking Gilenya since December. Recently my white blood counts have been extremely low and my doc took me completly off from it. He said that he could not prescribe another MS drug until my counts go up. I am scared to death of having a bad relapse. I had 3 last year and the last one was very bad. I have been off my Gilenya for 2 days and experiencing headaches, dizziness and cog fog.
Just wondering if anyone has been un this situation.
Thank you


vixen
1 month ago

Hi @kristisue, it might be better if you start another post under the heading ‘Gilenya advice’ or something, as often people only open posts with specific headings. All the best! πŸ™‚


stumbler
1 month ago

@kristisue , don’t worry yourself into a relapse.

Just relax and take each day as it comes.


itsmewithms
1 month ago

I was Dx in 2005 and put on Copaxone (one of the only DMTs available at the time) and moved to Rebif in 2014 as my new Neuro did not like the attacks that I had occasionally gotten over the years and he thought I should have been switched already as more effective DMTs came along. No new lesions but a slow creep of symptoms so that pushed me into a SPMS classification. I’m with Dr Boster on this one and many other current Neurologists, we need to get past these labels and really look at the person and what is going on. It is MS, and then look at if there is progression or not, if it is active or not and how aggressive it is.These are some of the critical points and then decide how it should be treated-

I was on Gabapentin (with a DMT of Ocrevus) last year when I was having some numbness in my thigh (Meralgia paresthetica) and a Dr friend of mine with Lupus recommended I switch it up to Gralise when I told her that I didn’t like how Gaba kind of surged and seemed like it would make my heart race, etc. She said that the extended release action of Gralise would probably be more tolerable- and it was. I pulled off that when the numbness went away but my Neuro gave me a Modofinal prescription to help with fatigue (my right leg tires easily) but insurance recommended Amantadine instead…I don’t find it helps with the fatigue but it does shut down the afternoon and bedtime leg spasms…so I have continued taking that. I also make sure to take Mg, get some Ca each day and Hi Cap C as well as the standard D3 recommendation we all get πŸ˜‰

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