Please post here for UCHL visits -

[Mogwai]

I'm in the same position as Shedevil, I saw Dr K at UCLH on 8/3 and I'm still waiting for my letter/report to come through, which is frustrating as she had recommended a medication to help at night, but I'm not going to go to the GP again until I have the letter.

It was a relief to see Shedevil's post, I was starting to think I'd been forgotten!
Mog

[louloutinks]

thanks for that star gazer.

I am seeing another doctor today and I am hoping that he will refer me to a neuro on evidence of A and E report - heres hoping!

[Stone]

I'm in the same position as Shedevil, I saw Dr K at UCLH on 8/3 and I'm still waiting for my letter/report to come through, which is frustrating as she had recommended a medication to help at night, but I'm not going to go to the GP again until I have the letter.

Mine took quite a while too, but she gave me a starter prescription (for amitriptyline, assume it's the same for you) to pick up from the hospital pharmacy. Maybe you could ask her to write you one out for you to pick up from the office or something?

Stone

[star gazer]

Ping the bulb just lit I was wondering why my joint issues had become more intense over the last 18 months, I had been prescribed Amitriptyline to help with migraine and neuro pain but was told by Prof Mathias team to come off ot before starting Midodrine for the PoTs as they work against each other. i might talk to them at my review in May and see if I can re introduce a low dose. Thought it was old age
I am also waiting for my follow up report from Prof G we will probably all get them in the post on the same day.

[shedevil_kt]

thanks guys it's nice to know that I am not the only one waiting I finally cracked and went back to doctor they still wont give me anything untill they have letter. I did however cave and start taking cocodamol again it's all they would give me I would off eaten a horse if it helped with my joints at the minute lol.

I hope we all get our letters and the help we need soon but they say good help is worth waiting for so I am trying to be a good patient and wait lol.

love you all katie

[star gazer]

It's the waiting for the postman thats gets me the post arrives later each day so I keep checking the letter box. I have never been like this before waiting for a report to arrive its bizaar I might have to start following the post man down the road If my legs let me
As the saying goes....a watched pot never boils
star gazer

[Mogwai]

Still no letter!!!

But I saw a gastroenterolgist at UCLH the day before my HMS appointment, and that letter arrived on Saturday, so I'm hoping the HMS one will be here this week.

Stone, you're right, I'm sure it was amitriptyline she suggested, but I have some unpleasant stomach issues so I really want to weigh up the pro's and con's of any new medication with my GP before starting it. I'm a bit reluctant to take anything that may cause stomach related side-effects so I'm hoping a chat with my GP will clear things up for me.

Mog

[Stone]

Ah, fair enough. I always take the side effects list with a pinch of salt - they write pretty much everything on them, and I've never had any serious side effects so it's easy to get blasé! Amitriptyline's usually pretty benign though, especially in the low doses we get given. Maybe have a read through the thread in the Pain Management and Medication subforum.

Stone

[Silvertoes]

My appointment has come through for prof G on the 7th July

[juliepops]

hi silvertoes !
So pleased for you How long did you wait from referral ? I was referred in February and still waiting for an appointment. Getting a bit obsessed with looking out for the postman every day !!!
Good Luck hope it goes well
Julie

[star gazer]

did anyone get their feed back letters yet from febuary/ march appts. with Prof G at UCH, I am still waiting and am not sure what the norm is, poor postie nearly loses his fingers at the letter box each morning.
star gazer

[Silvertoes]

Hi juliepops,
It's taken just over a couple of weeks from gp sending the referral request.
Might be a good idea to phone uchl directly to see if they've received your referral - as letters do go missing
Hope you hear soon

[star gazer]

Hi silvertoes, thats not as bad as I thought it would be. the neuro told my daughter today that she needs to see Prof Grahame and that it would be quicker for the g.p to refer her rather than the hospital, I had my doubts about that but my wait after referral via the hospital was about 8 months. I thought I would have to try and take her privately and borrow the money, but 3 months is really good. I think we will see the g.p tomorrow.
star gazer

[Mogwai]

Hi Stargazer, I was wondering the same thing myself.

I dont know about today, as our post comes a bit later, but nothing so far. I'm on the fouth floor with no lift at the moment, and our post boxes are on the ground floor so I'm only checking once a day! BUT, I was at physio at UCLH on Wednesday and my physio had a look on their computer system for me, the report is there, but is waiting to be checked/signed I guess before being sent out, my appointment was 8th March. So hopefully, this week or next it will be with me. I went ahead and booked an appointment with my GP to discuss meds, but its not until 28th April, so as long as my report gets here before then I'll be happy. I was thinking aswell, Dr K had some bloods taken, so maybe they wait until they have the blood test results back before sending the report?

Anyway, I hope the letters come soon. I'm like a terrier, shredding open letters to check for the report!
Mog

[Silvertoes]

Hi star gazer, I was impressed as well as I thought it would be much longer as prof g only works 2 mornings a week - so the booking secretary said. But i was told to phone regularly if i wanted to see if there was a cancellation appointment. I was down for either prof g or dr kk and her waiting list is shorter.
But it's worked out brilliantly as I'm in London the week of appointment so won't have to do a special trip.