new diagnosis

[dkjcmw]

 my husband was told on Friday that he has amyloidosis as you can imagine we are in total shock over the weekend we did a lot of crying we are now waiting for him to be go London to see what type he has. its all very hard to understand and take in does anyone know on average how long the wait for an app in london is.... we live in the north of Scotland and it is so so far away.

[karen Ledgar]

Hello,

Im in almost the same situation, only mine has not officially been diagnosed, im still undergoing tests, to confirm it.

Iv done nothing but cry, panic and everything since last Tuesday.  Im sorry I dont know how long the wait is for London, but I know exactly how you feel.

karen.

[Mark McConway]

Hi
I can fully understand what your husband and yourself are going through just now.  The wait on getting a full analysis of where - and how much - amyloid is present seems interminable when you are going through it.   I live in Fife and had an initial diagnosis at Queen Margaret Hospital in early March 2011.  My referral to the NAC took 2weeks (which was fast but felt an eternity).

I don't know if this will be the same for your region but my local health board paid the costs associated with my early visits to London (including carer) - train fare etc.  I found train to be the only way I could travel at the time .

My only other practical advice would be to avoid reading too much on the internet.  Your husband is an individual and his outcome cannot be gauged by anyone else's.  You'll be very well looked after at the NAC and, whatever they find, they'll tailor a treatment plan that will ease some of the anguish that this uncertainty is bringing.

Like most people who are on the forum, my thoughts are with you both.  All the best.  Mark

[Lesley]

Hello

I am sorry, I don't know your name?
I think Miriam would be able to answer this for you.
I can only say about my own experience that I was diagnosed here in Manchester on December 17th 2012 and I had an appointment to go to London in the January 2013
I think you will probably be like most people, not even known how to spell Amyloid, never mind know of her symptoms!
It is a very scary time and you wont believe me when I say I am a scaredy cat but have endured 6 cycles of chemo and a subsequent stem cell transplant since my diagnosis.
Please trust in the NAC - they are wonderful - efficient, pleasant, helpful and out of all this weird Amyloid stuff, you meet some great people/friends.
We are all here for each other and if one is down there's always someone to prop you back up again.
Please let us know your name and we can welcome you and your husband to this lovely forum.
Lesley
x

[Miriam Vered]

Hello and welcome to the forum.


Ramon, the Appointments Manager at the NAC, has informed me that the wait for an appointment is on average 2/3 weeks, but urgent patients are usually seen within one week. Please note that this is the time from when the referral letter is received at the NAC, not the date on the referral letter.


You can contact Ramon with any questions at 02074332813, or  r.lamarca@ucl.ac.uk


I hope that helps.

[georgeturner]

Hello,

I'm sorry to hear that your husband has been diagnosed with amyloidosis. I live in Glasgow and was admitted to the Western Infirmary on the 7th of April last year. The professor there was pretty sure I had amyloidosis and referred me to the NAC in London. He advised me not to look it up on the internet as a lot of the information there is pretty scary and out of date. I was discharged on the 10th of April after ECG's, echo cardiograms, angiogram, MRI and a heart biopsy. I have amyloidosis in my heart, but it can occur in many different organs, and there are many different types.

Yes, I was in shock too and very anxious about going to the NAC. I hope your husband has been diagnosed early as amyloidosis is too often mis-diagnosed early on.

I got my first appointment on the 30th of April. The staff there were all fantastic, right from the people on the reception desk to technicians, nurses and doctors. Hopefully they can ease some of your anxieties once you get there.

It's a long way to go, but your local health board should be able to cover all your expenses, and the NAC will book you into a hotel which is just a short distance away.

Hope you get an early appointment.

Good luck.

[dkjcmw]

today my husband started chemo at ARI  they seem to be moving very fast and are in touch with London all the time they tell us.. its so hard to not be with him as we live 2hours away from ARI and have 2 boys that I need to be with aswell. I have read much info on this site and am keeping away from anything else on net as advised by doctors at ARI.. it is just so unreal to take in my husband was perfectly fine until 9 weeks ago when he took not well one morning with abdominal pain and now we have landed here !!!!

[Elliei21@me.com]

Hi
Wishing your husband every strength to get through the treatment, as with all the posts , the NAC in London is your best source of information and the consultants, nurses, and all the staff are the friendliest and most understanding and supportive, their appointments are very well organised and they do help with travel and hotel accommodation across the road from the Royal Free Hospital. I was diagnosed early July and within 2 weeks was seen at the NAC and treatment was advised by London and carried out by my haematologist locally, tell your husband not to be afraid as I'm on 2nd course of chemo, and tolerating the chemo very well if it's any help to you and your husband at the moment.
Good luck and keep us posted of your husbands progress!
Strength and positivity always
Ellie

[patpinchin]

Hello,

Yes please do tell us your name.
I have nothing new to add but do want to endorse all the wonderful things others have said about the NAC. Having been a patient since 2005 I speak from many years of experience. I sympathise too with your particularly difficult situation having to travel from so far away and with children at home to look after.
I think you are very wise taking advice on board at looking only at the utterly reliable information here on the forum and on the NAC website. The Amyloidosis section of Myeloma UK's website is also reliable and worth looking at.  I will post you the link to the NAC Consultants' presentations at the 2014 Amyloidosis Information day. There is also an uplifting talk by a patient in remission.  Do also take Miriam's advice about phoning Ramon, the NAC appointments' manager. Ramon is helpfulness, kindness and courtesy personified. That way you may get a quicker answer than waiting for the letter to arrive. Of course you will receive the letter too, together with all the other information needed and details of hotel accomodation. I join my NAC friends in sending your husband and family my very best wishes for the best possible outcome.

[patpinchin]

Here is the link to the NAC Consultants talking about the disease and treatments both current and new. Also the patient experience: http://www.myeloma.org.uk/events/event/al-amyloidosis-infoday-london/

[suetrain@talktalk.net]

Hi,

My Sister Lesley was diagnosed with Amyloid back in December 2012, as her reply to yourself. As you say it is total shock and having never heard of Amyloid the whole family could not understand why and how this had happened. From my point of view it was trying to get your head around the situation and at the same time being strong and supportive. I will not deny it has been a long and stressful time, ( and dare I say we have had some good laughs along with the worrying times, which have not been easy)but  trust in the doctors, they are so caring, supportive and understanding. Lesley and I have met some wonderful people, both with Amyloid and their families, which makes you realize you are not alone.
My thought are with you and your family.

[alisonjayne]

I wanted to also send you very best wishes for a safe journey to London and successful treatment. It is a hard time, especially with children at home. I hope you are surrounded by supportive friends and family and that this diagnosis is An early one. Keep positive and keep posting here.
Best wishes
Ali

[Elliei21@me.com]

Hi Susan
Hoping your sister is well now I was diagnosed privately at the murrayfield hospital and confirmed at the NAC afterwards in 2010. Glad I got early diagnosis and then yes have met such brave and strong people over the last 4 and half years even though far away in contact with them and lovely to hear such good stories and we are all doing well and great support from the NAC too regards and keep well wishes to your sister, and the support From each of us on this forum is amazing too hope it will help,your sister too.
Regards Elllie

[JellybabyJan]

Hi

Yes it is sooo scary when you get the diagnosis. We were told at our local hospital Queens in Romford on 29/4/13 The kidney dr came round at 9 and said 'great news we finally have a diagnosis' (this had been going on since Oct 2012). He told Mike he has Amyloidosis, we said Amy what? He wrote it down and said someone would come and explain it all later. No-one came till 5pm!! Well you can imagine what we did, googled it. Worse thing to do. Cried and cried and cried! I will never forget so wrong the kidney dr was to leave us for so long with a shocking diagnosis. Knowing full well we didn't have a clue what we we're dealing with. We were referred quite quickly, a week I think and spent 2 days at the NAC. Like everyone else has said, the staff and drs are wonderful. So caring, understandable and knowledgeable.

Like Pat said, read reputable sites. My strategy was to 'know your enemy' I researched the disease after out meeting and armed myself with every bit of info I could. I feel this has helped us as I understand what they are talking about, it's not just gobbledygook!

Hope this helps. Good luck and I hope you're seen soon. It doesn't matter who you see there, they're all fantastic!

Jan