Seen specialist today

[Mal]

Was expecting to discuss medications and DMD'S with my specialist

today , but instead of being told as expected that i had r&r MS i was told

i have progressive MS so that went out of the window ,

 

he said i may still be borderline and has booked another MRI to see

if there has been any new lesions since the last scan .

 

not something i was expecting from my first meeting with the specialist ,

feels like im back to where i was before DX

 

 

Mal

[jayjill]

Well, Mal, I think the good news is that you're to have a scan so any decision is based on clarity. I saw a neurologist 18 months ago & he said that the ms was now SP for which there are no current treatments. He offered to prescribe modafinil for fatigue (which is used for narcolepsy) which I turned down. I asked for LDN but he said there was no reason for this to work. I've had this since on private prescription and think it helps mood and stress levels. I can't advise about dmds - hope you can get them but if not, try to identify the symptoms you would like treatment for, have some suggestions ready and be assertive! Hope it goes well - will be interested to hear how you get on. Jill x

[Mal]

Hi Jill

thanks for the info on the drugs , i know nothing about treatments so its a big help knowing

there names , so i can mention them to my nurse .

 

I saw the specialists registrar first today and she told me my MS was progressive so no DMD'S ,

then 45 minutes latter the specialist was telling me i may be borderline , hence the need

for a new MRI and he says depending what the scan showed he would

make decision on DMD'S .....but really i think ill have to get on with life without thinking about DMD'S

 

will let you know how i get on

 

Mal x

Edited 22 Jul 2013, 9:56 pm by Mal

[lala]

Hi Mal,

 

I am sorry to hear your meeting with the specialist didn't go the way you had planned. It's good news that they are doing more tests at least then you will know for sure and won't have any 'what if' feelings.Did they say whether they thought it was primary or secondary? I can understand why you may feel like you're back in limbo, however you're far more clued up on things than you were 6 months ago and at least you know what you're dealing with. Please let us know how you get on?

 

Best wishes

Laura x

Edited 23 Jul 2013, 8:23 am by lala

[Nick]

Mal,

The need for or not of DMD's was something I found difficult to understand myself having been diagnosed as SPMS in 2008. This is really then a matter of firstly having trust in the decisions of the neurologist in understanding your specific condition, and also in gaining a better understanding of your own MS. While there may be few suitable drugs in regard to 'modifying' SPMS, it may interest you to know that recent studies are ongoing into the use of some drugs already used in RRMS for improvements in SPMS. I am one of those people presently on such a trail which is looking into the use of Tysabri to improve mobility. In some ways I have found my own SPMS to be less of the 'roller coaster' ride than I understand lots of folks with RRMS experience. All this takes lots of time, so give yourself lots of room to understand just where you are at.

 

Nick

[Rama]

Hi all,

 

I have just read all your posts with interest. Although I am now thouroughly confused.

 

I was diagnosed with RRMS. However for the past 8 months to a year I felt that I was just slowly deteriorating. I have gone from being able to walk about a mile to now only being able to walk about 50 yards before I was really struggling to bend my legs or lift my feet up. Back in January I asked my MS nurse about trying new drugs because I felt the Rebif I was on wasn't helping. Or to get an MRI scan to find out what was going on. However my che consultant was quite happy to wait until our next schedules appointment which was at the end of May. A few bad falls convinced them to act sooner and I got and MRI scan in April. Saw my consultant at end of May who said no new lesions had shown up in my scan and the lesions that had been there a year ago had decreased. I asked what was causing the deterioration and he said it was progression. although he never mentioned SPMS. He prescribed me baclofen and switched me from Rebif to Copaxone as a possible side effect of Rebif is muscle stiffness.

 

So now I don't know if I'm SPMS? If I am are the dmd's doing any good? I have an appointment with my MS nurse in about a month - maybe I'll get some answers from her.

 

Sorry for rambling.

 

Mal - I hope you get some answers soon.

 

Gill x

[Nick]

Gill,

In a similar way I found it difficult that no one was very specific around my original diagnosis. In my case I do now feel more satisfied by understanding now ( 5 years later) just what a complicated beast MS is. I find that sometimes I am worse and then sometimes better, these variations are really underlined by the fact that the core problems simply never disappear, it simply grumbles along and then at times gets worse. That is really how I see the difference between RRMS and SPMS where in RRMS one might expect a disappearance of symptoms between relapses. I'm always on about 'life balance' and my primary aim these days is to look after this 'balance aspect' keeping as fit and unstressed as possible and I continue to learn about just where my (MS imposed) limits are. This is quite in line with thinking about which medicines will suit and learning about adjusting drug doses like Baclofen (I take this) to suit the situation.

Defining your specific problems (ie RRMS or SPMS or even PPMS) is really just giving it a name, what matters is not the name but how you can get the best out of a situation that you can't escape from but one that defiantly has the possibility of 'making the best' of it.

 

Nick

[Rama]

Gill,

In a similar way I found it difficult that no one was very specific around my original diagnosis. In my case I do now feel more satisfied by understanding now ( 5 years later) just what a complicated beast MS is. I find that sometimes I am worse and then sometimes better, these variations are really underlined by the fact that the core problems simply never disappear, it simply grumbles along and then at times gets worse. That is really how I see the difference between RRMS and SPMS where in RRMS one might expect a disappearance of symptoms between relapses. I'm always on about 'life balance' and my primary aim these days is to look after this 'balance aspect' keeping as fit and unstressed as possible and I continue to learn about just where my (MS imposed) limits are. This is quite in line with thinking about which medicines will suit and learning about adjusting drug doses like Baclofen (I take this) to suit the situation.

Defining your specific problems (ie RRMS or SPMS or even PPMS) is really just giving it a name, what matters is not the name but how you can get the best out of a situation that you can't escape from but one that defiantly has the possibility of 'making the best' of it.

 

Nick

 

Hi Nick,

Thanks for your reply.

I guess that's what I have to do - just learn to live with my situation and make the most of it. Although sometimes it is hard. Like you my symptoms never go away, but I do have slightly better days.

I think I want to be able to give my MS a label so the medical profession can say "Okay you've got such and such MS so we can treat you with this drug". But it doesn't work like that - does it.

 

Gill xx

[Mal]

Hi Nick,

Thanks for your reply.

I guess that's what I have to do - just learn to live with my situation and make the most of it. Although sometimes it is hard. Like you my symptoms never go away, but I do have slightly better days.

I think I want to be able to give my MS a label so the medical profession can say "Okay you've got such and such MS so we can treat you with this drug". But it doesn't work like that - does it.

 

Gill xx

Thats what i was so disappointed about Gill

before i went to see the specialist , i was told i would be discussing DMD'S with him

so my heart dropped when the words "progressive " came out of his mouth .

 

I can hardly remember what was said for the rest of the meeting .

 

Maybe one day Gill.

 

Mal x