For 6 years I have been back and forwards to neuros with no diagnosis. So took myself off to London in january this year to see one of the Barts MS Neuos.
He took all my scans (6 of them) plus notes and bloodwork etc and presented them at the Barts MDT meeting. The conclusion was that i had RRMS and should start tecidifera. But need to go back to my home town for treatment etc which was fine I thought.
Eventually saw my neuro yesterday and he has all the letters from the London neuro - but he said guidelines in here in Belfast say that you need 2 significant relaspes within a 2 year period to qualify. He did admit it was all down to NICE/cost effectiveness. I have had 2 significant relapses (Nov 2008 and Oct 2013) but the others have been mainly sensory which dont count as significant. The first I had in 2008 was in the cord which left me with foot drop. My last MRI scan also showed one new lesion. In 2013 my relapse gave me arm weakness with a tonic spasm, lāhermittes and numbness which I recovered from OK because it was the result of a brain lesion.
Anyway and I left the appointment with a private prescription for LDN.
In London now the view is time is brain and start treatment ASAP - not the case in Belfast.
I am now of the view that the only treatment available to me is HSCT and am looking at Mexico for that.
All your faffing about to get diagnosed and you still canāt get a DMD. I can barely believe it. I suspect that my neurologist would make the case for DMDs even if the majority of your relapses in the last couple of years were āonly sensoryā. What a load of ballocks. If youāll excuse my profanity. My neuro is still talking about DMDs for me even though he knows (as do I) that Iām really out of options given my side effect history.
Is there any chance of getting a different neurologist? Is yours an MS specialist? I would assume not being as you had to go to London for a proper diagnosis. Maybe if there were a more DMD minded (or more forward thinking) neuro you could be referred.
Personally Iād be a tad unwilling to go to Mexico for HSCT. Couldnāt the Drs at Barts offer you that? Itās the only place in the UK where you can get it so, given your wish to try it, wouldnāt they accept you as a patient for it? And that would be on the NHS.
What about getting Cladribine at Barts? Thereās much more scientific evidence for the effectiveness and safety of that than there is for HSCT. Much less anecdotal evidence but Iām doing well on it so far.
that is bullshit. i think you should lie. tell them your arm has gone numb.
my neuro was more than happy to consider any and everything as being indicative of a relapse, in order to justify my eligibility to start Tecfidera asap.
some might consider this a cynical cash grab, but personally, i am happy to err on the side of caution with such things.
when a single, even if isolated relapse gives adequate evidence of demyelination, i feel it is negligent not to consider it a worst case scenario; ie. an MS diagnosis is reasonable.
What youāve said Paolo is pretty much what I was aiming at, but as usual youāve cut a swathe through my over wordy answer and got to the bones of the argument.
Thanks all of you. He is a MS specialist but he says it has to go through a funding committee and he knows I would be turned down even though he would like me to have a DMD.
I would like to try Cladribine sewingchick but cant be treated outside my hospital trust in N.Ireland and they dont do any off label treatments on the NHS. Might be able to get it privately though but I didnt ask thatā¦
Yeah maybe I am just going to have to lie about relapses in future !
you doctor is honour bound not to tell porky pies. he is also obliged to express his true and honest opinion to you. that opinion states that you should (in his eyes) be on a DMD.
however, he has insight and experience enough to know that going through the process of getting you on DMD would be a wasted labour at this point.
it is a tad annoying that he isnāt even willing to try. one might conclude that he wishes to preserve his own credibility rather than your future good healthā¦ but the reality of the situation is that he is probably correct. flogging a dead horse would not help anyone involved.
and soā¦ i think your arm (or foot, or arm pit, or whatever) is tingling a bit no? hhmmmm? think about it? does it feel a little bitā¦ strange? this might be something of a relapse noā¦? maybe? and if so, it is not for the first time this year eh?
in all sincerity i am not a dishonest person; i live by the mantra of āhonesty is the best policy. an inability to deal with the truth is the other personās problemā but at the end of the day your medical expert is constrained by a box checking bureaucracy, as he tries to give you the best possible health care service. sometimes we just have to help them check the required number of boxes.
good luck! but going to a Mexican stem cell farm is going overboard i think at this point. unless of course you genuinely do not have any other viable alternative.
Thatās rotten Moyna, I donāt know how youāve coped for this long without lamping someone!
When I saw the Dr in London, we talked the things Iād remembered, like the numb toe that I saw a chiropodist about 12yrs before I was diagnosedā¦ my local Dr only agreed on Tecfidera and he felt it was the safest option and heād stop it if I worsened.
Truthfully, I now think Iām more likely to have progressive relapsing.
Iām glad you got LDN script but it must feel like a small consolation right now.
Thatās rotten Moyna, I donāt know how youāve coped for this long without lamping someone!
When I saw the Dr in London, we talked the things Iād remembered, like the numb toe that I saw a chiropodist about 12yrs before I was diagnosedā¦ my local Dr only agreed on Tecfidera and he felt it was the safest option and heād stop it if I worsened.
Truthfully, I now think Iām more likely to have progressive relapsing.
Iām glad you got LDN script but it must feel like a small consolation right now.