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Treatment?

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Hi,

 

something that has recently been niggling me is why have I never been offered any 'treatment' for my MS..is the no treatment route a common thing? am I expecting something that doesn't generally happen? I've had MS since 2003 seconday progressive since 2011 according to neuro'.. personally I think I've always been primary progressive..I have no memory of any 'remissions' just never ending symtoms and an insidious decline..the only thing I was ever offered was Gabapentin for my leg pain which made me feel ill..

 

The thing is I went to see my GP not so long ago about something not MS related..well she was a locum..they are all locums at my surgery none ever stay long..anyway for some reason she asked what treatment I was on for my MS..I said none..she was so shocked..she said I must have 'slipped through the net' and apologised profusely I was quite shocked by this..it started me thinking if things might have been different..maybe I would still be able to walk..maybe a lot of things..maybe I was diagosed too late for treatment..I only see my neuro' once a year so come September if by the responses on here it seems usual to have treatment I will bring it up with him.

 

Fran x


Edited by Softsqueezy

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Nindancer

Fran, I've read a couple of things recently about this, something like only 21% of RRMS patients are on DMD's. If you have an MS nurse then contact her/him but if not, call neurology and ask for an appointment to discuss this. Have a look at the DMD's available on the main Trust website to get an idea of what treatment you'd prefer as there's quite a big old choice now,

Good luck

Sonia x

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Thanks for your reply Sonia : )

 

All my life I have been anti medication for anything! but now I'm in such pain I think I really need to do something about it..I shall have a look at the list you mention and probably ring my MS nurse see if I can get to see her..I just do not understand why treatment has never been mentioned would have been nice to have had the option.

 

Thanks again Sonia x

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Nick

Fran,

 

Like you I am SPMS and as you will be aware there are very few DMD's available for us. I was on a trail with Tysabri which is now finished. I could not see any difference with my condition after this.

This may however interest you. https://www.nice.org.uk/guidance/cg186

Please note this clause:

1.2.6 Ensure people with MS and their family members or carers have a management plan that includes who to contact if their symptoms change significantly.

This implies that you should have available an MS nurse who can help. I feel certain that the system is one of self referral, but direct contact with your local MS Nurse will clarify the situation.

I have found that GP's are simply to busy and are often ineffective.

 

Nick


Edited by Nick
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Just another Warrior...........

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Mal

When you see your neuro do you not get to see your nurse at the same time ?

they're a lot easier to talk to and explain what difficulties your having

 

theres plenty they can be treating you with , you just have to ask ,even if they try to put

you off certain meds you still have a right to try them

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Hi Nick and Mal...thanks so much for your replies..

 

Nick you say 'as you will be aware there are very few DMD's available for us' thats just it Nick...I am not aware, I didn't even know what DMDs stood for til a couple of weeks ago when I googled it..

 

My story is onset of symptoms in 2003..between 2003 and 2014 I saw 3 Neurologists..each time several years in between the 3 appointments..each appointment I underwent a neuro exam with several abnormal results..I was being badgered into having a lumber puncture but I didn't want one..I had an MRI in the early years..but was told it showed nothing..yet when I had a second MRI a couple of years ago..it showed 'more' lesions..'more' would imply to me there had been some on the first MRI...anyway in 2014 I pestered my GP for another appointment with a Neurologist as things were getting bad..I saw yet a different neuro this time..he did the usual examination..sat me back down..came straight out with it you have MS..do you have any questions? (I was stunned into silence although I'd known for years I had MS I had given up hope of ever getting a Neurologist to confirm it) then he said I'm afraid we don't have an MS nurse covering your area..ok then I'll see you again in 6 months..that was Dec 2014..I thought it was 2015 but just found letter and it was infact 2014..in that time I have seen him twice more...he is always on his own no MS nurse..well just a nurse that is silently taking notes..some time later talking to another health professional..I mentioned there being no MS nurse that covered my area..she said there is!! so I searched google and sure enough there was..so I rang the phone number..a few times I was promised a call back..apparently she had 400 people on her books and I might have to wait some time to be offered an appointment..time went by nothing,...so I telephoned weekly basically made a pest of myself..eventually I got to see her..in total I think I have seen her twice...3 times max..next time I see her she says she will be sat in with my neurologist at my next hospital appointment with him in September..in all that time with albeit very few appoinments with Neuro/MS nurse medication has never been mentioned..according to the Neurologist I've been under since 2014 from 2003 until 2011 I was RRMS then in 2011 I changed to SPMS so thats probably why no mention of treatment if there are very few for us SPMS Nick.

 

I did look at the list of DMDs Sonia mentioned in her reply to me..and the side effects scare me..depression? things are bad enough without adding that to the mix..but hey I might not get any side effects..I am the eternal optimist after all lol..I've flippin had to be!!

 

Thanks for the NICE link Nick thats very interesting indeed.

 

Thanks again Nick, Mal and Sonia.

 

Fran x


Edited by Softsqueezy
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Sorry if my last reply seems muddled..it's been sooo hard to recall all that.... :stars:

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Mal

Your hospital should have an specialist MS nursing team , i can phone mine

anytime with problems or arrange a phone appointment for them to phone me back

 

a quick google shows a number of them at different hospitals in Yorkshire

you should ask your own doctor to be referred or phone the neurology department at your

local hospital , you should have one and see them at least once a year , my next appointment in October

will be the 5th this year , i find by talking to them its from there i get referred to see other specialists , if it

wasn't for the nursing team i would still be destroying my liver injecting Rebif so its well worth seeing them

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Nindancer

Sorry, I didn't realise you were SPMS. I'm PPMS so get nothing x

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Mal

Ocrevus will be available in this country maybe next year Sonia , its supposed to

be on trial now , I'm PRMS so i swing both ways lol :crazy2:

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Nindancer

Neuro at local hospital had no interest when I mentioned PRMS to him, he let me have Tec for 12 months then put me back in the PPMS heap as my mobility still got worse. Yes, I'd take Ocrevus given te chance

Sonia x

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Scully

I've never ever been offered any treatment. I was told at diagnosis that I had PPMS and thst ' there is no treatment for this type of MS, the best you can hope for is a trial of some sort '.....and with a shrug, that was that.

Been given steroids from time to time when things got really bad.

I've had a few episodes of late where I literally 'had no legs'

Be good to get some treatment if it's available....although whether the NHS will be able to fund it, is another matter....

Scully

 

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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Thank you everybody for your replies :flowerface: I've had a rough couple of weeks due to unbearable leg pain..even though I'm due to see my MS nurse and Neuro' next month I had to ring MS nurse on Friday to ask to see her sooner..I just couldn't sit still when the pain was at it's worst..she very kindly saw me yesterday..she was a great help..she's writing to my GP to arrange a prescription for Gabapentin which I have tried a long time ago but made me ill..however she suggested a very small dose to start off with and build it up to a larger dose over a long period of time..and she's arranging for me to go to a pain clinic..it was incredibly reassuring to see how much she was there for me when I needed her.

 

Well it's been an eye opener to find out for PPMS and SPMS there are no real treatments..quite frightening really..but hey it could be worse it could be cancer..suddenly I feel quite lucky.

 

Fran xx

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