Diagnosed 1996

New to posting, so be gentle. When I was diagnosed in Feb 1996, I was told ‘we are 99% sure from your MRI that you have MS’ I said I dont know what that is Consultant said ‘you will find details of the MS society in the phone book, we will see you in 6 months’. That was it, was given no leaflets nothing. I am now confined to a wheelchair, need hoisting to transfer, have a supra pubic catheter and an ileostomy. Have never been offered any drug other than gabapentin (which I take 900mg 3 x daily). Have just been feeling down today and my husband said why have you never been offered to even go on a drug trial, which I have mentioned to the MS nurse. I have never met the neurologist who I have been under for at least 8 years, just MS nurse.

So today I am feeling p!!! off. Just wondered if any one can give me some inspiration please. I feel completely let down by the medics and feel I vave been left to slowly, very slowly and painfully ROT. Sorry for my rant.

Hello Sue

I had my first MS attack in 1997, so just after you. At that time, there weren’t any disease modifying drugs available so being diagnosed with MS (or not in my case, even though it seems the doctors were fairly sure that’s what it was), wouldn’t automatically cause neurologists to prescribe any DMDs. It wasn’t until 2002 that the beta-interferons and Copaxone became widely available under the ‘risk sharing scheme’. If you’d been diagnosed with relapsing remitting MS, that is the point at which you should have been offered a drug treatment to prevent relapses and lessen the severity of relapses (by about 30-35%, so not great but better than nothing).

However, if you’d been diagnosed with progressive MS from the outset, then no DMD would have affected the trajectory of your disease and disability. The only drugs you could have been given are symptom related.

In my case, I wasn’t officially diagnosed until 2002 at which point I started a DMD, which gave me terrible cognitive side effects. Like I had the worst brain fog ever the day after I injected Avonex. But it was so bad, I couldn’t get my head round it or discuss it with the doctor, until 4 months later when I made the decision to not take the drug and go and talk to the neurologist. Then I went on Copaxone. It worked OK for about 5 years. Subsequently, the two other DMDs I’ve taken have given me bad side effects. So, in my 20 years of MS, I’ve had a DMD for 5 years.

I am also now progressive and quite badly disabled. I can transfer and can even walk a few feet with the aid of FES and a walker. But otherwise, I’m wheelchair bound, am about to have an SPC and am undergoing bowel investigation which is likely to result in some kind of ostomy.

So, my point in all this, is that after a similar length of time, we’ve maybe had different paths, but the end result is essentially not much different.

The truth is that if you’d been diagnosed today, you’d have had a vastly different experience to the one you did. Talk about leaflets, information, drug trials, potential treatments! 20 years into the future, the chances are that you’d be less disabled than you are today. The same is true for me.

I understand completely that you feel you’ve been left to get on with it alone, or as you say, to rot. In my case, I’ve seen no end of neurologists, I’ve taken drugs that have screwed with my cognitive functions, my liver and my white blood cells. I’ve had many MRIs, talked about treatments till the cows come home and yet, here I am. Disabled, unable to walk beyond the few steps that I’ve managed only through my own investigation and investment (no FES on the NHS here), trapped by the problems I have with bowel and bladder and still with cognitive problems, a whole gamut of other symptoms and no real way forward.

I’m in no way trying to minimise the fact that you’ve had no real help or information or drug therapies. Just to empathise.

Welcome to the forum anyway. There’s never a need to apologise for ranting on here. Everyone needs an outlet for frustration at times.


Hi Sue, why havent you posted before? We would love to try to support you. Sometimes our posts can be of a ranting type and thats fine...everyones entitled to a rant now and then. But we often get a bit silly…ok a lot silly!

Have you just had the 1 MRI? I wouldve thought more scans were appropriate with your diagnosis not being the full 100%. Ive had 4, plus lots of other tests and re-tests. Do you know which type of MS you began with?

I go back to the late 90s too, when I had mobility problems. I`m also a full time wheelie, hoisted and have an spc. There are a few here who also have an ileostomy.

I dont have ms anymore!!! I say it that way as I was wrongly diagnosed with PPMS and that was changed to a different condition, but it has similarities with PPMS.

As you have an MS nurse, you could speak to her and ask about trials and any plans to try you on a different drug.

I hope your mood can lift a little. This time of year doesnt help to cheer us up. Roll on spring eh?

luv Pollsx