Re: Breathing Problems in the UK

[Guest guest]

Hi ,

I remember reading about vocal chord problems on the list. Maybe search

through the older posts.

Good luck with the doctors. St ' is a nice place - it is the one by

the river right? Again, I have heard that for CMT you should go to the

National Hospital for Neurology and Neurosurgery - Reilly is a known

expert, and I see Mr Hanna who works there and at UCH Middlesex as well.

Best wishes,

Donna from London

[Guest guest]

Hi Donna,

Thanks for the info, I will have a search through the old posts.

Yes, St ' is on the bank of the river Thames, they were really kind when I

stayed there a couple of weeks ago. I have another appt as an outpatient on the

24th Aug.

It was my daughters 9th birthday yesterday so we had a family day out in London,

visiting the London dungeons (although I went to the aquarium with my 4yr old

son), London Eye, Natural History Museum and to finish off a duck tour and

cruise on the Thames where they all sang Happy Birthday to Hannah.

It was such a fantastic day but boy am I suffering today, just to see the smile

on the childrens faces made it all worth while. During the cruise I pointed out

the hospital where I stayed and I think it helped the children as they were

quite upset when I had to go away for a couple of nights.

Do you know if it is possible to contact Reilly for information?

Thanks again Donna,

Take care

[Guest guest]

Hi ,

Somewhere I have Reilly's number - but right now my place is a bit of a

disaster zone due to refurbishment. I cannot find my medical files and I

need my neuro's number and my last patient letter to make an appointment -

but this will have to wait until next week or end of August now.

The best way I think to get an appointment I think is to get a referral

through your neuro at the moment to Mrs Reilly. That way you are still in

the NHS and can see her through the usual route. She works from 23 Queen

Square and the number is 020 7829 8792, but I am not sure I think if you

call direct they will say either get a referral to make an appointment, or

you can possibly see her privately too, but as we know that can be quite

costly.

When I called her office they were very helpful, and I think her assistants

can point you the right direction for information about breathing

difficulties and CMT. She is one of the top experts in the UK on the

subject of CMT, so I hope they can help you.

If you see and become a patient of Mrs Reilly and then are genetically

tested and shown to have CMT1A, then you are eligible for her vitamin C

trials. Only her patients will participate. The trials are still pending

funding and have not commenced yet. I have to make my neuro appointment to

get genetically tested and referred into the trial.

It sounds as if you had an amazing day yesterday - the weather was SO nice,

and today too. Relax and make sure to rest when you need to, in order to

get your strength back. The rundown feeling is so horrible I can appreciate

that.

Have a great day and take care.

Donna from London

[Guest guest]

Hi Donna,

Thankyou for the info, I have an appointment with my neurologist in

September so I will mention and take her details along with me. I will also

give her office a call to see if they can provide any more info on my breathing

problems. The trial sounds exciting, anything that helps is worth trying.

Hope you manage to sort out your house, building work starts on our

extension begining of September and I am not looking forward to the mess.

Luckily my Mum has said we can stay at hers for a few weeks.

Thanks again Donna,

Take care