MS Clincs

sqooka

More questions! I'll try keep this short.

I was diagnosed with MS 3 years ago, completely out of the blue (in hind sight there was at least 1 relapse earlier that same year and another 2 years earlier). The diagnosis came after a particularly severe flare-up that was responsible for all the lesions on my MRI and I had a positive lumbar puncture. It took about 6 months to recover but I did, which was amazing and even more amazingly my next MRI was clean. Before the follow-up MRI in one of the MS clinics (which I still attend) it was strongly reccommended that I start taking Fingolimod. I was still reeling from the whole thing so wasn't ready.

At my next appointment I had decided to start DMDs, even though I was fine, because I was afraid of progression and had read in a lot of places that you shoud start treatment as early as possible.
But needless to say, because of the clean MRI the doctor I saw not only didn't think I should start treatment, he seemed to question the entire diagnosis. So I went away from that appointment in absolute bits, all of a sudden being tested for things I felt should have been ruled out in the first place BEFORE I was told they were 100 percent sure I had MS.

At my next appointment it was all normal, but this time around, even though I still hadn't really been experiencing any MS-symptoms, I was told that if I planned to leave the country to get in touch and that they would sort out treatment for me. So again they seemed to think I should start, but after the last appointment I no longer thought the diagnosis was correct.

Now recently I've had the first continuous MS-like symptoms since diagnosis, they're luckily very mild, just weird pins and needles running down my lower back and in my legs when I bend my head forward, a numb right leg and my right thing muscle feels like I've pulled it. It's been like that for a few weeks now. So it helped me to finally accept that yes, I have MS, no, it wasn't all some bizarre mistake. It made me decide again that I should think about starting treatment to try to avoid progression, but when I had a recent appointment the doctor I saw this time seemed to think I was better off without them, told me my symptoms could be from a number of different things (B12 deficiency, neck strain...) and booked an MRI.

Now obviously that's true, they certainly could be. Either way I know I have a very good prognosis. I just can't figure out whether that means I'm better off not taking anything, that maybe the costs would outweigh the benefits and I was just wondering at what stage did other people start treatment? Did other people defer? If not, were you having regular relapses?

I'm really sorry for how long that turned out to be, I just also wanted to know, have other people found this with the MS clinics, that because you see a different doctor every time there doesn't seem to be consistency in the recommendations they make, with some pro-early treatment, others against where they've decided it's mild?

byhookorbycrook

Diagnosed in 2009, my advice is to get on a treatment asap. The less relapses. the less damage.

sqooka

That's my attitude, and I've gotta say say I've been quite surprised by the ones who seem to have the "you're better off not on treatment for now....." attitude. It just seems like deferring the inevitable to me.

byhookorbycrook

No, no, no, all the research says the sooner the better. I'd also suggest Vit B, D and omega oils .

byhookorbycrook

Feel free to PM me, if I can be of use.

greenbicycle

Is this in Vincents Sqooka? i know that the neurology department there uses that type of system where you don't always see the same doc/consultant. however you can ask to see a particular consultant on the day and wait, it might mean waiting a little longer but it might be worth it for you. of course the doctor you want may not be there as they rotate between outpatients and in patients too.... give it a go and ask anyway.

I agree with what you are saying though, different doctors will take different approaches which leads to a lack of consistency and i would prefer to see the same neuro every time. i think they found that it reduces waiting times though.

sqooka

Thanks for the responses, nah, it's not Vincents (I'm not sure I'm allowed name it). I just wanted to know if that's something other people have found, as it's very difficult for me to know what to do when if I do go happy to start DMDs then I seem to be discouraged, while if I turn up at my appointment happy as things are then they'll be suggesting I start DMDs. And it has taken me long enough to come around to the idea as it is. Ah, in the mean time I'll stick with all the supplements, but I know they're no substitute for DMDs.

byhookorbycrook

I would also strongly suggest taking out private health insurance now-as there will be a waiting period before the health insurers cover certain DMDs so at least if you need them down the line, you'll bet able to get them.(If you haven't it already)

sqooka

Good suggestion, I upped mine three years ago, so only 2 more years till they'll cover me for this stuff. I'm not sure what difference it'll make to me, except that I'm on a year-long wait list for my next MRI.

byhookorbycrook

I have to be MRI-ed every three months now.TG for health cover.

ash23

Bit surprised at the reluctance to give DMDs. The day I was diagnosed I was given the prescription for the DMDs and I collected them the following day and have been on them since. My neuro is very pro-DMD.


I had one relapse but MS wasn't even considered. Then I had another relapse (sight problem) and the initial problem also flared up. The opthamologist called down a neuro who did a quick exam and referred me for an MRI. Had MRI which showed 3 lesions. No LP. Was still given a confirmed diagnosis at my first (and only) neuro appointment and prescribed the DMDs.

I read about the hoops people have to jump through to get diagnosed and start treatment and I thank my lucky stars that I ended up under the neuro that I have.

Back next month for my first follow up appointment.

sqooka

That makes two of us. I'm wondering if it might be a case that they're generally much slower to give public patients DMDs. Oh well, sure I'll know in 2 years when private health insurance kicks in!

byhookorbycrook

DMDs like betaferon, avonex etc don't need private insurance.

ash23

I have private insurance but I'm a public patient. I have a medical card so was seen initially as a public patient. The only time I used my health insurance was for an MRI.

The dmds are free for anyone with ms.

byhookorbycrook

Tysabri is limited in a number of public hospitals such as CUH. There is also the crazy situation I am aware of where a patient has been told they can have their Tysabri in the public hospital, but not in the private hospital which is the only one of the two actually giving Tysabri.So, in other words, they can't get it.