Last reply 3 months ago
Consultants /Treatments/Rant!!!!!

Hi.

Been diagnosed 2 years now, so I guess you can say that its nearer3 with the symptoms.

Not had a relapse in that time, just a period around Xmas when had bad back spasms/chest pains but apart from that I just feel I am going slowly downhill. If I look at myself 6 months ago and then 6 months before that then a definite decline. I am wobbly all the time now, balance is awful. Fell over in the middle of Exeter at the weekend, embarrassing!!!. Need a stick all the time. I was on Tecfidera for over a year. No side effects at all, just didn’t do anything, so stopped taking it 2 months ago.
Consultant appears to be useless MS Nurse appear to be useless, offer no advice at all. Just go on about drugs and don’t seem to give a monkeys about what I am actually going through. “You’ve got MS, what do you expect” That was the quote that has really thibk that these people are a waste of time.
Latest advice is that consultant thinks I should go on the new Cladribine drug. Anyone had any experiences with this yet. I know it only got licenced 6 months ago. I have no idea if these DMD’s will make me feel better. I am not expecting to be cured, but I don’t want to take something that isn’t going to make any difference. Also unsure about taking 4 tablets over 2 months then nothing for the rest of the year.
I reckon Ive got progressive not relapsing but no-one wants to say anything about how rapidly Ive gone downhill.

Yes I am still angry, still unaccepting of this crap, still confused!!!!!!!

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vixen
3 months ago

Hello @dj1964, I feel your frustration and pick up on your frustration. My track record is much the same as yours,and judging from your user name we must be a similar age, so diagnosed around 50, right? I take Tec too, but am well aware that there is no ability to assess whether or not it’s working. The only thing with me is, I had a bit of a relapse/dip recently and it was nowhere near as serious as my initial relapse that started all this is 2016. So that could be the Tec working, but who knows?if you fell this weekend, I guess it could be a relapse? The thing is, the relapse experience I’ve had doesn’t really tie in with what others experience, so I put that down to one of the issues around being diagnosed at a later age….

It seems to me that there’s lots of support around diagnosis and immeditely after, but then there is the feeling that you’re on your own thereafter. I’m doing OK, but thinking about cutting back on work. Again, there is no way to really get support with this other than Occupational Health, but that’s not going to pay the bills!

There are some posts on here I think for Cladribine if you search.hey, keep your chin up, no one really understands what we go through but the folks on Shift are our allies at least x


stumbler
3 months ago

@dj1964 , it’s understandable to be angry and it is difficult to accept, but be patient with yourself.

Cladribine (now named Mavenclad) is the latest hope. It’s like a mini-chemo drug, in that it resets your immune system in a way that prevents it from attacking the Myelin on your nerves.

It does sound like you have a Progressive variant of MS, which normally precludes you from any treatment. So, the Consultant would appear to be fighting your corner.

I’m sorry that you feel the way you do about the MS support that you have received. On the one hand, we need to be under no false illusions, but there is a way to put that across. But, if you feel that you would like to talk to someone about your feelings, then your MS Nurse should be able to arrange a referral to a Neuro-psychologist.

And, yes, please do use this Forum for a rant. It’s best to unload here, where we understand, rather than create an atmosphere at home.


grandma
3 months ago

I think I am just changing from rr to 2 pms but like you nobody is saying anything I had rrms for 23 years, they told me in 1993 that rrms usually became 2pms In. 10-15 years, but it has taken 23 years so I can’t complain. Have just been changed d nTecfidera after. 23 years on BetaInferon in an attempt to cut back on the number of relapses, as I usually have a couple a year it will take the rest of the year to find out if it’s working. Don’t know if any of this info is any use to you, and by the way haven’t seen my consultant for 7 years but my ms nurse is brilliant and probably knows more than him anyway!😍 Jill


grandma
3 months ago

By the way I forgot to say RANT all you want, we’re here for a moan, a cry, a celebration, a question, anything you want, were quite a nice bunch, don’t judge, and you aren’t doing anything we haven’t already done. We’re always here and have even been known to crack a joke occasionally ( no guarantee it will be funny) because with ms if you don’t laugh you will cry and stress is no good for the ms😍


seanachai
3 months ago

how did they diagnose RRMS ?

Sadly you really need do your research before speaking to consultants and know exactly what you want to achieve before finishing your appointment, prioritise your questions as time is short and a lot of consultants will be trying to get you out the door as soon as you start cross examining…. research the therapies available and see if they fit your personal case….. I would also suggest maybe you explore alternative options and even look into the latest HSCT…..

I totally understand your anger and emotion, it can be soul destroying when the experts seem to make you feel worse when your looking for hope… there a help out there, would suggest joining as many sites like this and on facebook as you can, as you cannot have enough information and contacts….


dj1964
3 months ago

Thank you all for responding.

It is nice the know that people understand, or at least can get what I’m saying.

vixen, you are right 54 next month. Still cant get my head around the last 2 years.
we have a daughter (18 now with DS and mild autism) and she is going through a difficult time (not associated directly with me) so my wife has been consumed with all that and other issues, so cannot cope or deal with my condition at all. Its driven us apart, not made us closer which I really could have done with. All of this is just me, appointments, decisions etc.
No I don’t want to talk to anyone. I’m not a talky person and if anyone else tells me to be ‘positive’ just pray there’s not a sharp instrument close by!!!

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