Forum

complacency

I guess since my meeting on Tues when I accepted the inevitable and agreed to retire I fell into a well thats that then lull. Ive plodded along as I am well at the moment,spent far too much time sitting on this site and trying to coax life into my poor seedlings that are shivering in the greenhouse.

I collected the post and not only is there a letter for a first appt with the ms nurse-next week- to discuss dmd but also the go ahead to start pension proceedings.

I am really grateful that dmd are on the cards( as my gps response had been you wont get them as they cripple the nhs) but I think I had forgotten about it being real if anyone understands that.

Its all become very much alive again...Ive only said this on here as I know you all understand too hard to explain things.

Sorry for the ramble but better out than in eh

Pip

Hi Pip

My GP told me i would never get DMD's as my ms was not severe enough.  3 weeks later i was told i could choose which one i wanted by my neuro and ms nurse.  They were great.  I chose Rebif which i have been on for over 6 and a half years.

Do some research before you choose the right treatment plan for you.  Best Wishes and hope all goes well.

Teresa.x

Cheers

Came as a shock for some reason as my appt was early Feb. On good old Rizzo advise I did the ms decision thing and copaxone came out as first choice for me..why on earth I would want to inject daily amazes me but  the flu symptoms scare me more.After the pethidine (spelling?) in labour I could never do the muscle one.

I read on here that many people seem to be routinely started on Extavia with no choice. Do you know why?

Pip 

I dont know what Extavia is, Pip.  Can you enlighten me?  It will be 7 years in September since i had to choose and things change.

I was also shocked when i got an appointment to discuss DMD's.  I think it was because of the GP saying i would never get them!!!!  Two fingers up to him then!!!!!!!!!!

I am fine on the DMD and i have no disabilities at all yet.  I get lots of symptoms but it is not as bad as i was before i started the rebif. it's definately helped me.

Teresa. x

 

Reading from the info Ive j ust been sent its  Interferon beta 1b  ??? Doesnt help me either if thats your response!!!

Fingers crossed they work aswell for me as they appear to for you.

Thanks

Pip

Treek and Pip

Really interested to read that after 7 years you have no disability... that's really great and I think worth shouting about!

I know its nosy and if you don't want to tell me thats fine but I'm really curious about how old you both are?

Most info says that it is mainly under 40's that are diagnosed.. ??

Gillian

Hi anon,

I am 40 years old! I was diagnosed 7 years ago but know i have definately had ms for 13 years and possibly more.

I had ON 13 years ago and my GP covered it up and told me it was an eye infection!!  the less i say about that - the better!! lol!!

I have lots of symptoms that come and go and have sometimes had quite an impact on my life but no disability yet but obviously at 40 its a bit like a time bomb waiting to go off!!

Best Wishes

Teresa. x

sorry Teresa not sure why I appeared anon... I am Gillian.

40 years young I say... the symptoms are disabling I would agree, as is the fatigue. (I swear it feels the same as it would if you were given a horse tranquiliser!!) but I still feel heartened that your ms has been "controlled".

Thanks for responding, Gillian

Hi Gillian

How old are you? have you a diagnosis? are you on a DMD?

I am also nosey! ha ha!!!

Teresa.x

Hi Pip

If you google extavia there is plenty info on it and other drugs also.

My experience is with Rebif obviously ( interferon beta 1a). I knew about Avonex, Copaxone, fingolymod,cladribine and the infusion one as well but cant remember extavia!  perhaps my brain is playing tricks on me again!

Your ms nurse will talk you through what is best for you though.

Just to complicate things - I am interested in the new drug being trialled at the moment called BG12 (not available yet)

Teresa.xxx

I'm 44, my neuro thinks Transverse myelitis (TM), which can be associated with other disorders such as ms. I'm waiting for results of the tests.

However TM causes all the symtoms such as the hug and the freaky pains and fatigue... but only around 300 cases are diagnosed a year. There is a forum for TM but its barely used so until I have a diagnosis I come on here when the pain or fatigue are driving me nuts. At least there are other people experiencing similar things.

I think this site also helps with the isolation... it's a long day when everyone is out at college/work, and then has things to do in the evening. I'm used to working long hours and then being busy with activities but getting bathed and dressed does me in at the moment

Hey Pip xx I think your feelings are to be expeced!!

All the very bestest with the meds xxxjenxxxxhappyflower

Hiya Gillian    Im 44 and no idea how long the ms has been lurking.

I had st vitus dance (chorea) 24 yrs ago and when I was dx with ms in Feb I asked if it was a ms relapse not chorea and he point blank said no but I aint so sure.

Thanks all for your comments,and yes I know this is a stupid time to be up but the pain in my legs is unbearable so this is distracting me nicely. Yet another positive thing about this site.

Pip

 

Hi Pip

Sorry your legs have woken you early due to pain. That’s horrible! I was just disturbed by the fact that your GP said you wouldn’t get dmd’s due to the cost. What do they do? Make a list of people who they think are worthy of having expensive drugs or not? I have PPMS so this problem doesn’t apply to me.

I am currently trying to get my GP to prescribe LDN as it is unlicensed to be used on MS but can be effective for some Msers. I don’t think she will though as she was supposed to get back to me several weeks ago and hasn’t bothered. I have an appointment with her next week.

Hope your day improves Pip,

Teresa xx