Got a letter today from the Society outlining trials of two drugs amiloride and phenytoin. Inviting me to give £25 towards the funding of these trials.
My reason for a bit of a rant is - I was diagnosed with PPMS in 2007. I told that as the title suggests I would progress the only unnown was at what rate. (Luckily for me my progression so far I would describe as slow). The Neurologist once this diagnosis was confirmed discharged me which to be honest does feel a bit like being thrown on the scrapheap. I am registered with the MS Nurse I’m sure they are busy but are almost impossible to contact. Mention anything to do with MS at the GP and they say better contact the MS Nurse (see previous sentence)
It may sound selfish but I consider how is this research going to affect me and I have to conclude that it is not as I am now on the ‘outside’ so to speak. Who is going to consider the likes of me for any trial etc
Im not feeling sorry for myself and quite happily do all I can to help myself, diet,stress avoidance, exercise.
Just wondering if fellow PPMS’ers get the same feeling or am I being paranoid.
Hi Oscar, sorry only just saw your post after I posted one about the new drugs.
I’m disgusted that you were discharged by neuro Oscar. Ok I only get to see my neuro once a year… but at least I see one (for a whole 10 minutes!).
I think the best news about these new drugs is that actually they aren’t new. One has been used for high blood pressure and the other for epilepsy for years… so I’m assuming they won’t need to go through such long ‘safety’ checks. I hope that means we can get them soon rather than later.
Oscar, why don’t you ask GP to refer you to another neuro? Say that you want to be with a neuro so that you can take part in trials. I think that’s an excellent reason to keep seeing a neuro, even if it is only once a year. Worth a try?
No, you are not being paranoid. It’s true. They really haven’t anything at the moment to help us and I’m very aware of that when I’m having my 10 minute annual visit to neuro. I’m on benefits so keep going so I can get letters to support my benefit claims… otherwise, well I’m not sure I’d bother.
Let’s hope these 2 drugs are going be available to us soon… and try to get yourself a neuro Oscar!
I dont know how common place it is for people with PPMS to be discharged by the Neuro. Whilst on one hand I dont have relapses and I know there is a dearth of treatments so I can see why I dont go. But on the other side I just wondered if once discharged those people with PPMS are in the Neuro’s thoughts once/if a treatment became available.
I get the impression at the GP’s that they want to keep everything MS related at arms length if you are already refered to a specialist service, although that is the MS Nurse in my case. I dont know how widespread this practice is.
Thankfully there are forums like this to keep informed.
I too was “struck off” from the neuro but I insist on 6 monthly visits to the ms nurse which I feel are useful. There is not too much info that the neuros can give us other than current trials etc.
I speak to the ms nurses about my current medication, physio etc and do find this useful. Maybe ask if you can do something similar. At least I feel that something is being done.
With regard to the latest trials, I will try and find £20 so at least I feel there is some hope, despite this being a small drop in the ocean!!!
I think the Neuro discharging someone with PPMS seems to be fairy common. In a way I have no problem with that. Being able to contact the MS Nurse for any problem is valuable.
I dont want to turn up with the Neuro every year and have the same short conversation and I know at the moment there doesnt seem to be any meds that work, My concern is that as persons that have been discharged are we ‘out of sight out of mind’.
Im not crtiicising lack of services as such but the thought that we might not considered for drug trials etc. because we are not on the patient list.
I think it will be a case of trying to keep up with developments myself and if/when the time comes turning up and making a nuiciance of myself.
I think the Neuro discharging someone with PPMS seems to be fairy common. In a way I have no problem with that. Being able to contact the MS Nurse for any problem is valuable.
I dont want to turn up with the Neuro every year and have the same short conversation and I know at the moment there doesnt seem to be any meds that work, My concern is that as persons that have been discharged are we ‘out of sight out of mind’.
Im not crtiicising lack of services as such but the thought that we might not considered for drug trials etc. because we are not on the patient list.
I think it will be a case of trying to keep up with developments myself and if/when the time comes turning up and making a nuiciance of myself.
Hi, the same happened to me a couple of weeks ago as i got to 5 years from diagnosis. I was told I was progressing average, there is nothing he can do for me, so no new appointments. But I do get to see an ms nurse whenever required. They are fab. I think it must be very frustrating for neuros who have nothing to offer. Since we are the minority, research has not favoured ppms, or ms at all - not a very sexy disease & certainly not given much of a profile…oops rant starting…
I’m really quite shocked that so many people are being discharged after they get a diagnosis…
I’m taking my hubby over to The Walton Neuro Centre for his MRI this afternoon hoping that something shows up so that we can move forward and maybe get some form of treatment to improve things.
I feel completely flabbergasted, but at least we know what to expect
I suppose I can get it that the Neuro discharges us if the condition is stable although progressing if there are no suitable treatments.
What corncerns me is the feeling of inclusion, once discharged will we flag up if a suitable trial becomes available, will the MS Nurse keep tabs on these things. I have no idea if they do or not.
Its a good job we have this forum to collectively pool our knowledge.
I think we all need to pro-actively try to help ourselves, especially when the neuro appears to have thrown the towel in.
After mine did that, I had a long chat with my MS nurse, who has put me forward for the latest ppms drug trials. I shall be increasing my vit D intake too. I also have started attending an MS Therapy Centre. Have a look at the MSRC site, there are facilities all over.The one I went to in Bedford is fantastic. Initially I shall be trying the hyperbaric chamber & hydrotherapy. There are also MS specialists including nurses, dieticians & even a legal and benefits advisor. It’s a remarkable facility, all funded by charity.
Good luck, remember nothing ventured and all that…
It’s interesting that amiloride is commonly used for high blood pressure. Some months ago my GP prescribed chlonidine hydrochloride (also medication for high blood pressure) becuase I was having bad menopausal symptons. They have been brilliant; not only have the hot flushes gone away but so have the restless legs and shooting pains at night, they have cured my overactive bowel and I sleep so much better at night. So maybe there is hope for us PPMSrs
Hi oscar11 I was diagnosed with ppms mid 2010 and I too struggle to get intouch with the ms nurses at the rvi hospital up here in Newcastle , i gave up trying to get hold of them . They told me that if i needed any help or info just fone them hmmmmmm gave up on that idea awhile ago .i just get realy frustrated most of the time with the symptoms lack of balance fategue lack of sleep , energy and most things that go along with ppms . I was due to go see my neuro end of Jan this year for my anual mot as i call it lol but with the bad weather and realy suffer bad with the cold and lack of co ordination i missed that appointment, just waiting for a new date … Anyway the thing i thank the lord for is that i and others like us are still alive and that there are others out there alot worse off than us . Take care Oscar and chin up . Ps am still waiting to hear if and when I’m up for drugs trial .
