Just a quick recap - hospital mid Nov, provisional dx from MRI via GP mid Dec, confirmed dx via neuro 4th Feb, and now I’m waiting for a letter inviting me to book an appoinment with the specialist who can get the ball rolling on DMD’s etc. It seems to be taking for ever. My neuro took a week to send the letter to the other neuro, so in the meantime I contacted the MS Nurse, who was great, but now its nearly 7 weeks since that letter was sent, and still no ‘we’ve recieved a referal, please ring blah to book an appointment’. I rung the hospital, and they said they’d recieved it, and these things take time, and my MS Nurse is chasing too.
I know I’m not urgent, and there are people far more in need of treatment, but I feel a little bit lost. I’ve worked so hard to be positive, and get myself back on my feet after a tough few months, I’ve thrown myself back into life (but with a bit more care than previously) and I’ve been pretty happy (with a bit of help), but I can feel that slipping away as the wait goes on. I’ve just come home from a few days working away, and was almost in tears when I saw all I had was junk mail on the door mat. When I booked my initial appointment there was a 9 week wait, if that happens again, then it could be mid/end of May before I see him.
Is it me or does this seem a bit extreme? Am I just being unfairly impatient?
Hi, this sounds like my experience. I was diagnosed last feb, didnt get to see the ms specialist until the september! Over 6 months! I did enquire about this length of time with the MS specialist at my appt, he said this was normal. I can understand your frustration entirely. So I didnt actually start DMDs till the October, 8 months after diagnosis. All I can suggest is that you chase the neuro secretary and do your research on which DMD you would like before your appt. Take care.
Oh blimey I think I’ll call again today, at least it feels like I’m doing something. Every letter, appointment or date in the diary helps with morale a little. At this rate I’ll be seeing my neuro for my 6 month appointment before I see the specialist! Thanks for your reply
It’s really tough but sounds all too familiar! I posted a thread yesterday with this problem. I rang the Neuro secretary yesterday who had just written the referral letter 12 days later and it was still hanging around the office. I feel for you - it’s really frustrating. Fingers crossed it will be sorted out soon. Stay strong x
Painfully slow You could try telling them that you’ll take a cancellation. If you can do one at very short notice, all the better. Fingers crossed! Karen x PS It helps knowing what you want before you go. Also maybe consider Tysabri, in case it is offered because if you haven’t and it is, the neuro will no doubt tell you to go away and think about it, which will add more time to the whole process!
Thank you everyone, I’ve just got a bit down in the dumps about it all. I’ll sort myself out. I’ve left a message with the neuro’s secretary and I think I may have sounded pathetic enough to warrant a bit sympathy. Sound advice Karen, thank you. I’ve decided on Rebif, and was planning on telling him I’m up for any research program’s or trials that they may want people for. Will definitely think about my answer if he suggests Tysabri I did receive one letter today - from the DVLA saying they’ve not had a reply from my consultant yet. Has the NHS run out of ink?!
It seems my council haven’t either. Had three separate letters arrive in the past three days, along with two prepaid return envelopes - all encased in the three envelopes used to post them and of course costing three lots of postage: all to send my new blue badge and ask that I send the old one back, cut into two. What’s worse? The badge arrived before the two (identical) letters telling me that my new badge had been approved and should be with me in 10-15 days.
What a bloomin’ waste indeed. It’s either poor planning, poor communication or a case of ‘well that’s how we’ve always done it…’ I might suggest your council send my hospital trust a toner cartridge! (A few years ago my Dad ordered 15 CDs online. They were delivered in individual boxes all at the same time, 15 CDs landing on solid wood floor at 7am on a Saturday morning. I think my Dad thought he was under attack!)
I am feeling in a similar position was diagnosed 3 weeksago wwaiting for letter from ms neurologist I keep hoping it will arrive so I can start the bsll rolling. Feel in limbo since diagnosis as nothing happening don’t see ms nurse to beginning of April. I am signef off work but don’t know how to get everything into perspective to move things forward and try an get a ggrip since diagnosis.
It sucks eh Barney. It is very difficult to move forward when nothing is moving forward with you. I hope you hear something soon. I always get anxious as to what I’ll find on the door mat, but today came home to post that is for someone who doesn’t even live here! Grrr!
I think I’ll call again today, at least it feels like I’m doing something. Every letter, appointment or date in the diary helps with morale a little. At this rate I’ll be seeing my neuro for my 6 month appointment before I see the specialist! Thanks for your reply 