Hi as you can see this whole new world has opened up to me and as I have no idea if this will work I will just say I was diagnosed yesterday so i have stabilizers with the dx and computers!!!
Welcome to the forum…its good to see you have your sense of hunour despite getting your dx yesterday…! Hope you are ok…and from reading others posts everyone is different as to how they deal with their dx…You will find plenty of support on here and Rizzo is a wizz on many aspects so any questions…ask away…hope you find the main site helpful too…have a peek at the daily living section too…take your time to get to know things on here…
Hope your day is going ok too…x
Thank you for your reply. I have amazed myself by joining this site…have only ever managed shopping before and i usually end up losing that.luckily I have teenagers to retrieve it…knew there was a reason for having them
I have been lurking for 6 months ish…reading only,and to be fair have realised any questions I have will be on here and the answers in plain english - from people who dont think your mental when you say your legs are lead but shaky have been a godsend.
I was passed to the QE in Bham by my first neuro and yesterday was told its RRMS and he hasnt decided yet if I need first or second line treatment…whats the difference? I know I should of asked him but had a brain fart as my kids call them.
heya Pip…practace makes perfect re online stuff.in any case those teenagers need to earn thier keep!! lol Glad you have decided to pop on here in person now…I have heard the QE is very good…I am under the eye neuros at Bham city hopsital …and at present they are saying there is a neurological problem re my eyes/ON but not saying anymore than that…had brain MRI early feb…so awaiting results and to re see eye neuros again…good old limbo land…!! Yes its great on here…you can ahve a rant…and generally talk about how you are physically and there is an understanding here on that all the aspects of ms, its its preculiarities…
regarding first or second line treatment…I dont know about this but someone should answer that for you…“brain fart”…love it!! Only kids could come up with such a good expalanation for a blonde moment as I call them…haha…
Em x
Hi Pip
Glad you plucked up the nerve to post It’s all horribly daunting at times!
First line treatment is the injectable DMDs (disease modifying drugs): Avonex, Betaferon, Rebif and Copaxone. Second line treatment is pretty much only Tysabri these days, although it depends on your neuro - there may be other options. Second line treatment is reserved for people who haven’t done well on the first line DMDs or for people with aggressive MS. If you have a look at www.msdecisions.org.uk you will find out loads of info on all the options.
Welcome to the world of leaden, shaky legs and brain farts! We all understand perfectly!
Karen x
Hi and welcome,
There are so many good people on here that you can turn to if and when you feel the need.
Janet x
Hi Pip Was dx myself in Dec so understand where you are coming from. Glad you got past the technology to post. This is a great place to find answers or to vent sadness and frustration. Stay in touch, Teresa xx
Morning all, thank you for your responses it is so nice to be able to talk to people who know where im coming from. If you will bear with me i will bore you wiyh how Igot to here.
My mom had MS so when i went blind in one eye overnight Jan 10 I had a feeling I was heading this way.I have always put excessive clumsiness down to the chorea I had 25yrs ago…thats an entertaining tale in itself!!!
Throughout 2011 I had 3or 4 episodes of walking like a drunk but usually able to right myself ,covered in bruises from the magnetic pull of solid objects(especially door frames and doors) and generally having major problems at work as I work with people with disabilities who need me to be the strong stable one!!!
I had ON again in Oct 11 and work said enough is enough we cant manage whatever is wrong with you any more.I went back to gp who I had avoided going to as I knew it would start the ball rolling again. I suppose I had put myself in self inflicted limbo and really have felt for the people who are left there by the neuros and the stories of heartache I have heard on here.
2mris have been done each one after ON and the dx has been that quick. My query that the neuro just dismissed is- after the 2011 falling over larks when they stopped that was it no other symptoms at all . since oct ON and a very quick episode of falls I now have leg issues (walking like a very arthritic elephant) on and off burning in my neck and pins+needles in my arms and hands oh and fatigue that outstrips pregnancy fatigue by a mile. I have to take amitriptyline and baclofen to function,is this likely to be how it is now?
Thank you for reading
Hey pip…hope youre ok today…gosh…you have had a time of it…you are here now though and amoungst friends…sorry to hear your work were not supportive…see how you go with the meds…I think from reading on here everyone with MS has different experiences of how if affects them both when relapsing and when not…do you have an MS nurse who you can talk al this over with too?
em
Thats the confusing bit,my old neuro gave me a neuro rehab nurse who I have seen once and an OT and physio have also done home visits and have follow ons booked.I live in dudley area but have a sandwell gp and neither have an ms nurse at the moment.When I saw this new neuro at the QE on mon he was the first to say it was def ms and that I would be assigned their ms nurse and other people as necessary and today I had another neuro appt come for Feb2013.
so I dont know if an ms nurse will contact me or how long this will take.My GP view when this snowball started rolling was that I wouldnt get treatment as they cost a fortune and cripple the NHS.
Work is my major stress point as they have made it clear they intend to retire me and have written today to say my sick pay stops next month.I have 18yrs of mortgage to pay which because of my husbands age we only got based on me working long after he retired!!!
Thanx again to everyone the site is a godsend
Hi Pip…well the whole ms nurse thing needs sorting asap…regarding treatment you are entitled to it…maybe see the living with ms forum re drug therapy or Rizzo/Karen could tell you more? Either way these ms nurses can sort allot out re drugs, physio etc.
As for work hun…by law they have to make adjustments to your job role so you can continue working for them…ottherwise they are breaking the law… also the CAB can advise you re work etc…I would get “access to work” involved now…contact your local jobcentre plus for info. Also check out on this main website the ms centres near you…I think there are some stourbridge way…which isnt far from you in Dudley? I am in north Bham, sutton coldfield area…They can advise also about the ms nurse thing…there is supposed to be a patients charter ting for those dx with MS…in terms of access to services etc…Karen could prob tell you more on this than me!!
Keep smiling hun
emx
Thanks for the reply I think they have me by the short and curlies as they have made endless adjustments to be fair to them but because of the nature of my job feel they arent safeguarding other people properly despite attempting to resolve the risks.If this damned MonSter wasnt so unpredictable I think Iwould have a better case.Ive had a letter of them today that I cant qmake head nor tail of,and that is a huge worry cuz after holding down a complex work role I cant even understand a letter.
But on a lighter note there is loads of free vit d going in Halesowen today
Pip ps my family are from Aldridge!
Check the insurance policy on your mortgage ms is often covered
Hi again Pip.
If your latest relapse & bunch of symptoms started in October 2011, it is still really early to be able to tell what might hang about for good. One of my friends was still having improvements in her ON 18 months on, and it took me at least a year to recover from my last big relapse. So, although some of your current symptoms may be permanent, there’s a very good chance that things will improve.
Re your work, I recommend you give Access to Work a call. Alternatively, try the CAB. I really don’t know enough to give you any decent advice, but I doubt that they can just retire you against your will while you’re having a relapse.
Re treatment (i.e. disease modifying drugs, DMDs): the NICE eligibility criteria for the injectables are to be over 18, to have had two “clinically significant” relapses in two years and to be able to walk 100 metres or more without assistance. The tricky bit is the very woolly “clinically significant” - it basically means disabling / serious / debilitating, but some PCTs apply some strict rules for this which means getting DMDs is hard if not impossible. It does sound like you should be eligible though. If I were you, I would be chasing it - letter to the neuro to clarify your eligibility, phone the MS nurse to initiate contact (you should be able to get the contact details from the neuro’s secretary or maybe your local MSS branch). It is best to start on DMDs as early as possible and (when you’re eligible) people who ask are more successful at actually getting on them.
As Chis said - make sure and check any possible policy that might have a critical health clause. It might help you out with that mortgage!
Hth!
Karen x
Thank you all so much for your relies I shall follow them all up…but the great news I have you to thank for is I am covered on critical illness and they are sending me a form.At least a will be able to pay the mortgage while I re-train for something else work wise that is less physically demanding…if I end up needing to.
Thank you all again…and to anyone having a bad day this just shows good things do happen.Hang in there.
Pip
WOOHOO! Great news
Kx
PS Has anyone told you that you need to inform the DVLA of your diagnosis?
Hi Pip, sorry for such a short post but glas it was of use to you, my fingers not working properly and takes me ages to type but I wish you the best of luck! Chis
Thats ace news re policy…one less thing to worry about eh…
x