my husband,mick as primary proggressive ms,well they think,after being prodded and poked mri scans lumber puntcher.blood tests.months of being drip fed,the words aggressive and offered macmillian.pretty frightened,when the hell is someone going to sit down and really tell us whats happening.iv asked for a meeting with ms nurse,please tell us whats going on,as anyone else found this,they tell you bits,then say just got to see if theres anythink else.this is all been going on since october last year.why cant they give some treatment,incase its not primary p as they dont seem sure,sometimes i feel theres so many consultants involved that is why mick as not been properly diognosed,we have been passed to each time to another one,then it starts again.beleive me im not a moaner im very respectfull of the doctors etc but enoughs enough.its getting me down now so in limbo christine x
Hi Chris
Has he had steroids yet? I that’s all they can give us in terms of getting better and that’s whay it’s a waiting game. They won’t give us DMDs as they might so more harm than good apparently!
Sonia x
yes sonia he had steroids a few months ago and because they dident work,they said its not worth using them again.thanku thats helped me understand why they are not giving him any meds,its so hard all the waiting,and so hard watching him getting no better.im not stupid i know his got it bad but its so hard watching someone you love.have this disease.i have to find a way to deal with all the frustration,despaire,scared,isolated,feelings i have.iv got in touch with the nurse ill go see her thanku sonia x
Christine,
I just thought of something, I’m not alone in taking LDN (Low dose naltrexone), it definitely seems to have some benefits for me and I’m guessing you and Mick will probably want to try searching your options!
Here’s the website:
http://www.ldnresearchtrust.org/
It’s not a miracle cure but it seems to have a few unexpected good improvements for me. Have a good look at the website and if you want to try getting it prescribed then there’s a pack you can print to show your GP.
Let me know what you think
Sonia x
Hello Christine, no wonder you and hubby are proper fed up!
It is rare that someone goes downhill as quickly as Mick has.
Being offered Macmillan nurses is also quite rare with PPMS.
I have also seen many neuros and have had the run around for years.
You need and have a right to get to the bottom of whats going on.
Could you speak to Micks GP about it, with his permission of course, or they wont speak to you.
I feel for you both.
luv Pollx