Some more advice please guys

[Eyesnlegs]

Hi everyone, just got back from the GPs again she is soooo lovely after 20 years of no one listening at least she does that. The letter from the neuro had arrived and his diagnosis was 'relatively mild MS' ............... 'please refer again if she has any more neurological probles'

WELL - they might be 'mild' to him but they certainly aren't to me. The GP said she had never met anyone diagnosed with MS who had not been offered support or monitoring at the very least and she did not believe that there was any such thing as mild MS, most people had RRMS.

I asked her lots of questions about how to deal with the symptoms day to day and tried to sound really knowledgeable thanks to all you guys on here. She has asked me to try Citalopram which should help to lift my spirits - is how she put it - but that's fine by me as the depression has been severe this time with the dodgy knees and not being able to go out and all. Has anyone come across these 'mood enhancers' at all? Have they helped?

Plus she wants me to go back and speak to the neuro and ask him all the questions I asked her  because I didn't ask him like:

Why did you only do an MRI on the brain this time when my spine had lesions last time?
Why have you never used contrast?
Why are you not making plans to monitor me?
Why have you not pointed out some support for me?
What about any drug thereapy?
Should I be refered to a specialist MS neuro? - seems a silly question to ask your neuro but the GP thinks it will be fine to ask him as she admitted she was 'out of her depth'.

So - even though it will be a while before I see him - any ideas of what I should be asking - all suggestions welcome.

[Eyesnlegs]

Thanks once again both REALLY useful info that makes a lot of sense,

I will keep trying and keep you posted though it takes time here to get anything sorted out! My problem over the years has been getting my GP to refer me when I have any symptoms  they have always tried everything instead of refereal.

The biggest problem in the last few years is as I was going through the menopause too they blamed that and refused point blank to refer me. Which meant that my 2 abnormal MRIs were 4 years apart. So my next struggle is to get another one sooner as well as a sympathetic neuro.

I will start a new thread about the anti depressants.

Thanks again for all thehelp
X

[Mand125]

Hi there

I am UK also and was diagnosed "mild" MS 15 years ago and left to get on with it with no follow up care.

2 years ago I started to get relpses at quite an alarming rate and got my GP to refer me back to my neuro.

I then pushed for and got DMDs. My BIG regret is that I didn't start these ages ago as the course of my disease might have been different.

Familiarise yourself with the criteria and USE YOUR KNOWLEDGE!

"Fig. 1 The ABN Treatment Criteria for Beta Interferon

Relapsing-Remitting MS

Patients must fulfil the following four criteria:

  1. Able to walk independently

  2. At least two clinically significant relapses in the last two years

  3. 18 years old or older

  4. No contrai-ndications"

It's actually very simple once you know this, go to your neuro, tell them that you have studied the criteria and fit it - if of course you do - you talk about dealing with your symptoms so I guess you have had relapses.

I'm sorry to go on about this but I don't want you to have any regrets about waiting like I did. Use the system, you won't be doing anything wrong, don't let it drop  I know it sometimes looks complicated to others but it's really quite simple - if you have MS and can walk independantly and have had 2 relapses in the last 2 years you are entitled to the DMDs. This is just for RRMS, there are other slightly different criteria for SPMS but you don't need to worry about that.

Please look it up, learn it and use it. It really is reasonably simple and what's more it's FREE!.

Good luck and don't give up
Mandy

[Lulu54]

Hi Pat,
We are on at least a 6 hour time delay with you ..... you should be sleeping while we are up and active!  Tread cautiously before you pay for the consultation - would that throw you into private care then and keep you out of the NHS?  You want to be sure you maximize your benefits.  

Be sure to read the health pages here - they will be of help to you in understanding this.  

The cost sharing requires the drug mfgs to reimburse the NHS if their treatment does not meet stringent goals in showing improvement.  Gettting DMd's in the UK is so much more complicated, due to this economic incentive to only give it to patients that will absolutely show positive results on tests.  The cost of MS in the UK is very high and the NHS is also trying to keep those costs down by only giving DMD's to the most needy cases and letting the rest of you linger on your own.  Very frustrating system to read about and to know from our UK members here.

As for the citalopram question, why don't you start a new thread about that?  I have a feeling your question has been lost among the rest of this conversation.

Have a fine day, Lulu

[Eyesnlegs]

Sorry for the delay in answering - went to bed early tiredness is awful - Thanks to all of you, I had reservations about going back to him anyway, I know that the GP has already written the letter, but that doesn't mean I have to go.

I think I will keep educating myself and find out about this cost sharing scheme, but I think it might also be woirth me finding a sympathetic MS neuro (this one wasn't) and just paying for one consultation since they then often put you on their NHS treatment list.

Thanks so much for your support I will keep you informed of what happens.

Love to all
Pat

PS I still have the question though as anyone tried Citalopram apparently it's an SSRI?

[Lulu54]

was your neuro an MS consultant or just a regular neuro?  There's a whole different system in the UK than what we have in the states for your doctors.  You are also under the NHS, which might be good and well for many things, but does a big diservice to MS patients with this "mild" or "benign" diagnosis that has to do with saving money instead of treating patients.  

Familiarize yourself with the Cost Sharing Scheme (UK's words, not mine!) that dictates who does and doesn't get the DMD's, and be prepared to argue your case for treatment to the MS Specialist.  

As far as most of us are concerned, there is no such thing as mild or benign MS that can be proved until after we are dead.  Only then will we know for sure that this disease won't do permanent damage.

Stay in touch and keep educating yourself about MS while you wait -
Lulu

[jensequitur]

I agree - obviously the neuro has no idea how to treat MS, so it would be a mistake to pursue treatment with him.  

[Fluffysmom]

I think a new neuro is in order here."Relatively", I mean, really!  "Mild MS" For pity's sake!  I doubt that the neuro would consider it any such thing if it was his MS!

I sincerely think that there is no such thing as mild MS.  MS is active, even when nothing new shows on imaging or exam.  If this neuro were current with his information on MS, he would know this.

And to not make arrangements to monitor you?  With a MS diagnosis?  Unacceptable.

As stated in my first paragraph, if he were the one with your signs and symptoms and test results, would he deny HIMSELF DMDs?  We need to dig up an article; I know they've been referenced, about 'mild' or 'inactive' MS.  

Please, someone come up with some good information, as my brain is not so sharp right now.  I know we've heard it all here before.  I don't know if showing it to the neuro would help; you will probably need to ask your GP for a referral to a new neuro.

Sorry if this is a bit scattered, I mean well, but I'm not feeling well right now.

Take care,

Kathy

[opie74]

Get her to referr you to another Neuro.  Have her send the letter form the last one.  I don't trust anyone who says mild MS and does not offer treatment.  Waiting will only let it progress.