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[stumbler8 months ago]

@insomniacoffeelover , this suggests that your MS is progressing and that the Tecfidera (well, I think it’s Tecfidera!) isn’t working for you.

Has a treatment review been suggested? If not, I would ask for one.

The following website might help you identify the next move :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

[mlgilber18 months ago]

I was in the hospital for my symptoms at the end of May, had an MRI, and was diagnosed. Then I started Tecfidera and only a month later suffered another bad relapse and was back in the hospital. They did new MRIs on my brain and spine and had way more than just 1 new lesion. I had them scattered all throughout my brain and a new one on my spine that is 3 times the size of a typical MS lesion. I’m not sure how serious new lesions are, but my ms specialist and I have decided to try a more aggressive treatment even though I wasn’t on the Tecfidera long enough to know if it would’ve helped or not. I agree with stumbler that maybe it’s time for a treatment review. I’m sorry there was a new lesion. Best wishes!

[insomniacoffeelover8 months ago]

Thanks guys, I’m going to go on gilenya now! /mlgilber1, have they mentioned Tysabri to you? It’s the blockbuster of MS treatments!

[vixen8 months ago]

Hello @insomniacoffeelover, sorry you’ve had this setback but thank goodness there are other options out there for us all, things were so different only twenty years ago. Good luck, I hope this DMD suits you

[lightning878 months ago]

Sorry to hear you have a new lesion but hopefully this is the DMT for you and prevent further ones x

[mlgilber18 months ago]

@insomniacoffeelover They did offer tysabri to me as an option, as well as gilenya, but I went with ocrevus because it’s a bit more aggressive and they suspect I may have devics disease and it should help with that if I have it since ocrevus is an immunosuppressant. Good luck with the gilenya! I hope it goes well!!!

[insomniacoffeelover8 months ago]

Thanks everyone, so glad we have this online supportive community x

[breezy192 months ago]

Hi @insomniacoffeelover. I’ve stumbled on your post because I’m having the same series of events that you described! Had my annual review with the neuro today and there’s a new active lesion compared to all my previous scans over the past 3 years. No obvious symptoms though, so I suppose that’s good. But the neuro wants me to start on Gilenya (have been on Copaxone a while now). I imagine you’ve been on the Gilenya few months now? How have you found it?

[kerrie_jean_bick2 months ago]

Hi. Never been on here before. I was in hospital last May. Told it was MS last summer. My hospitaldont deal with this so sent on waiting list for London hospital. By time I’m seen. It be one yr on. From being told I have two leasions. One in brain one in Spine. It’s all scary. I’ve noticed I’m feeling more tried. Parts of me aching. I get pin needles in left leg if walk a lot. Dizziness and headache If I’m ill it seems to take it out of me more. Is this part of MS. As I have no idea. Like I said I’m not seeing another doctor till March.

[rogersouthall2 months ago]

Firstly, sorry to hear the news, I too have had an increase of legions in the brain. I am concerned Tecifedra, was a drug that was prescribed, my white blood count depleted and I was open to every illness imaginable, I then was told I had the JC brain virus, amazing, now I take CBD oil and no other drug except pain killers, read my blog, it is, so I am told, a good read’
http://www.wholesorts.com

hope all goes well

[supermum19832 months ago]

I have 4 lesions, 2 on my spine 2 on my brain, my ms nurse said when she came to my house they want to do another mri scan in a few months too see if anymore have appeared, I’m hoping no more have, appeared ovbs. She offered to do a bladder test which I was happy to hear about, fed up of been on the loo all the time. Lol

I went to the gym first time in since my diagnosis I feel so much better for it, I didn’t run like normal but went on a incline. Try not to worry x

[stumbler2 months ago]

@kerrie_jean_bick , yes, your symptoms are representative of MS.

It’s frustrating when one hospital can diagnose you, but not help you. That doesn’t sound right.

I’d go back to your GP and discuss this situation and see if they can bring any pressure to bear to expedite matters.

[kerrie_jean_bick2 months ago]

My doctor sent me home when it all started. I had to take myself to hospital. Ended up staying in. Lumber needle. Mri. All test confirm MS. That doctor told me two leasons also. And treatment ASAP. But she left. Then got moved to another hospital. So haven’t seen anyone for 5 mths. 5 March is my appointment. Where treatment is ment to start. But not holding my breath. Another new consultant. So they start it that day. I’m fed up with being passed around.

[stumbler2 months ago]

@kerrie_jean_bick , contact the Patients Advice & Liaison (PALS) team at your hospital. Explain the situation to them and see if they can expedite matters.

[insomniacoffeelover2 months ago]

Hi @breezy19, sorry to hear you’re going through the same thing but I promise the shock wears off soon! I’m on the Hilenya since August. I Was on Tecfidera before and am so happy to not having the flushing anymore! I’m going for another MRI next month to see if the Gilenya is working but the side effects really were minimal. I was a bit tired and felt a bit sick in my tummy but it was completely manageable and went away so definitely go on the Gilenya 🙂

[insomniacoffeelover2 months ago]

Thank you for your replies @rogersouthall and @supermum1983, please let me know how you find the CBD oil as in really interested. And supermum, we’ll done on the gym, even the gentlest of exercise is anti inflammatory so keep up the good work!

[supermum19832 months ago]

@insomniacoffeelover I don’t think I’ll be trying its too expensive, my friend had showed me her bittkw tiny I think it’s over 20 quid! I’m off to bed now, yeah want to try and keep up to it!!

[smack2 months ago]

If you are seeing new lesions then the ms is progressing. If you aren’t on a DMD then steroids may help calm inflammation. If you are on DMD then it is not working. Talk to nuero about different path. Different drugs target different things. No one size fits all. Good Luck!!

[rogersouthall2 months ago]

CBD oil is to some confusing, the weaker stuff can be found in Holland and Barrett, the stronger is on Healthspan,co,uk, that is 15% compared to 5%, if you looked on my blog
http://www.wholesorts.com
I mention CBD oil that is 66% and there is also a site that tells you all about benefits, I believe it to be fantastic and at an affordable cost, does it work, people ask, well I stopped all MS drugs and take CBD oil, I am fine but am aware the strain of MS I have may require a re think, read my blog

[breezy192 months ago]

Thanks @insomniacoffeelover, it’s good to hear firsthand accounts of minimal side effects 😉 I’m in the process of organising my pre-Gilenya bloods and eye test, so hopefully will be starting it within the next month or so. 👍