UK sufferers please!

Could I ask UK sufferers who they have found in the UK that they have confidence in, who they feel is up to date, who is able to prescribe the more potent meds, and who is wholehearted about a scientific systematic trial and error approach. My GP has written 13 referral letters and I have not received any of the up to date possible treatments in five years of searching. Only some behind-the-curve treatments such as Capsaicin, and Propanalol.

Would so-o-o-oh appreciate your help. Also which meds had some impact for you.

Best wishes

ajh

Hi ajh, I'm from the uk also and I feel for you. I sorry can't be any help re meds, like you I was only offered what they are already using, the propanol was my last after a bad flare during summer. It didn't work. Cooled my wrist and ankles to the point of freezing but hands and feet were still on fire. I don't have much faith in meds at all anymore. Have you been referred to a Rheumatologist? They might get further than the GP and because its so rare and there are only a few of us in the UK they are more likely to push for clinical research.

Best of luck ajh,

Meggie

Where are you in the UK ajh?
Nel

Hi Nel

I am in Hertfordshire. I am quite severely limited by my EM but can get to North London, Bucks, Beds, Oxford etc

Hi ajh, When I first began to suffer symptoms of EM (in middle age) which was quite a long time ago, I had no idea what was wrong with me. I was in despair until a friend saw a TV prog. about EM and Reynauds Disease. I contacted the Reynauds association and a lovely lady, who suffered with BOTH sent me leaflets, newsletters etc. At the time the only Specialist researching this was in Dundee - out of the question for me to travel there. My GP had never heard of the condition and was unhelpful, so I have had to help myself. EM affects me mostly in my feet and lower legs. I also am unable to bear being in temperature over about 65F, so I wear sandals in all but the most severe weather, and wear thin layers of clothing so I can peel them off as the temperature rises. Oven cooking is a nightmare and I often end up in my undies, ( hoping no one will call !) I had wondered if my condition had anything to do with my Rheumatoid Arthritis. I have never tried any meds. and reading of other people's experiences, probably will not. Sorry I can't help you in this respect, but you could try the Reynauds Association. They were SO helpful - even giving me the address of a fellow sufferer in my area. Hope you get some answers soon.

Redhot Ruth.

Dear AJH,

you prob seen my posts on site. Would love to help and support you in anyway. I have compassionate proactive UK specialist Fought FDA and on SCB trial. Ive been on every med.cream in book we are on same page. Happy to phone you/vice versa to discuss. Easier- disability/immobility so hard to type.

God bless

mads

Hi there, I'm so sorry to hear you're struggling. I have been lucky enough to get a referral to Prof Denton at the Royal Free in Hampstead and his team of rheumatologists who also have a small number of patients with EM too. They have always used a trial and error approach with me, I have primary EM since birth. I currently take Imipramine and Nifedipine daily and was having twice yearly infusions of a drug called Iloprost until I found that it stopped working for me. I would definitely recommend asking for a referral to this team. Good luck!

http://www.raynauds.org.uk/images/stories/75-em.pdf

I was lucky enough to be diagnosed by Prof Carol Black at the Royal Free, London in 2003 after wondering what was wrong with myself since 1998. In my case once I knew what was wrong I felt somewhat comforted. I could not tolerate any of the drugs so just "put up with it". I usually get out of bed in the middle of the night to cool down and let the bed cool down whilst I have a drink and write a shopping list or something, do some gentle yoga stretching and deep breathing and then return to bed. It is the life I lead. Others, I know suffer more than I do and I do not know how they cope! The people at the Royal Free may be know other hospitals around the UK who can help. Ask!

Lyn

I am also being seen by Prof.Denton’s team and it is such a relief to be listened to by doctors who know all about EM and treating it. Early days for me in terms of medication. Good luck with your search
Nel

Forgot to say that there's also a wonderful neurologist and pain specialist at the John Radcliffe in Oxford called Dave Bennett who might be worth asking for a referral to. He's brilliant, it's just a shame that different hospitals don't seem to communicate much.

Im getting really mixed views of Royal Free. I am wondering if those that are favourable (Lyn, Jayne and Nel) have Raynaud's/scleroderma as I think Chris Denton probably does accept these. Has he put anyone on lidocaine/mexiletine? This is fascinating if it weren't so horrible!

best

ajh

I do have Raynauds but I don’t think you have to have Raynauds/scleroderma to be accepted there.
Nel

I saw Dr Dave Bennett in Kings Cross London over 18 months ago, he is a specialist in primary EM. He was great, did loads of tests, confirmed my diagnosis and also did other tests to check out what my EM might be secondary to. He also did genetic testing just to confirm the primary/secondary dx as I was worried about passing it onto my daughter.! Sadly although he passed my case onto another practitioner in London after his move they failed to check out my MRIs and other results and subsequently it took 16 months to find out I have MS. Dr Bennett was brilliant at responding to my personal emails to him even when I was emailing at 8pm on Sunday nights I was getting replies within an hour. He followed up with the 'lost/forgotten' results and managed to get them sent out. He also offered for me to go see him in Oxford to do more tests and confirm the results from London or to go back to Kings Cross, I declined and asked to be treated at my local hospital just because it would save time, money, stress and I'd know the results would get back to my local gp. He re referred me to a specialist (MS not EM) in Norwich but also followed up with a couple of phone consultations with me.!

I would wholeheartedly recommend trying to get a referral to him.

hi all been tied up with builders and longing to catch up with you all. Thanks for your really helpful replies. Does anyone know Dr Michael Lunn at the Nat Hosp for Neurology and Neurosurgery? I have been put on to him and am keen to check I am not going to have another wasted journey.

Also I would be really interested to see who has managed to be treated with lidocaine infusions/mexiletine, where they received this treatment and how far did they have to take it before they received it.

blessings all

ajh

I was offered Lidocaine infusions but then got results back resulting in a MS dx on top of my EM. Think they must've put the lidocaine on hold because of that because I haven't heard from my Pain specialist since Sept when referral was made. My notes say thay will see me again after infusions so if I don't hear again soon I will chase it up.!

thanks Lauraflora1 - wish you luck ajh