After waiting and waiting for my doctor and pain management specialist to find an EM specialist in the UK I received a letter in the post. I have been given an appointment at Kings College hospital in London, with a member of the neurological team led by Dr David Bennett. I was wondering if anybody else has been seen there and if there is actually an EM specialist in that department…?? I will have to drive a 250 mile round trip to get there so really want to find out if it will in fact be somebody who can help me with my EM.
That appears to be good news , Let us know how u make out and what he has to say about EM. Take care
Hi Laura,
i live in the UK Greater Manchester Area I have been refered and have already seen a Dr David Gow who is in a Neurological Dept. and aparently been researching EM. where abouts in the UK are you??
Hi Laura, I contacted Dr David Bennett a few months ago and he kindly replied and told me the following regarding the information I sent him:
"Erythromelalgia and CRPS share some common features-ie both are associated with severe pain and colour changes in the skin. Erythromelalgia is not normally triggered by a surgical procedure (it is classically an inherited genetic condition with gradual onset of symptoms)"
I'm still not 100% sure I've got EM or a sub type of CRPS as they've suggested, but I'm about to try a transdermal topical Amitriptylene gel that I'm getting compounded in the UK at a specialist pharmacy in London. I'll let you know how i get on with that once its arrived and been tested for a week or so.
I would really appreciate hearing about your visit to Dr Bennett :)
Thanks
I live in Norwich Bebee, was your appoinment useful to you. Everybody I've seen so far has admitted to knowing very very little so hope this will be the start of good things. Did they do many tests and if so what ones.??
I am pleased that he took the time to reply to you reguarding your questions mnp, please let me know how you get on with the transdermal topical Amitriptylene gel, was this prescribed or did you have to source it for yourself..? I tried Nortriptyline teblets but they didn't help at all, I think they are similar.!
I will let you know how I get on with my appointment, but its not until May so just doing a bit or research first.
Another member messaged me with a youtube video clip of Dr David Bennett and 2 EM patients which I watched yesterday.This put my mind at rest that I will be seeing somebody with some knowledge of EM :)
Yes, I saw the same clip too and then emailed him directly :) As for the topical gel, I sourced several academic studies trialing the use of them (albeit very small samples) but showed incredible results. Pharmacies all over the US/CA compound these gels as a matter of course, but are almost impossible to find in the UK/EU (I've been researching for weeks now). There is a clinic in the Netherlands called www.neuropathie.nu and this one in London I've found (http://www.specialist-pharmacy.com/) import the crucial transdermal base from the USA. The regular pharmacy route costs £300-500 for 100g, but the SP in London its £45 for 100gr - they can also do a gabapentin/amitriptylene mixture - but costs twice as much. Hopefully hopefully this will help as I can't stand taking the pills. The NHS is trying to fastrack a product called AmiKet (amitriptylene and ketamine PLO gel) but its still in trials for now. So specialist compounding is the only option for now. Hope this knowledge helps :) Best wishes, Mike
Thank you Mike,
I hate taking the pills too but I was unable to do or think about anything else tha pain had got so bad. I am now up to 9 or 10 300mg Gabapentine capsules a day now but this has left me almost like a zobie at times. I drop things, forget things, have terrible memery or concentration and have put on 12lbs in a matter of couple of months. Oh and I sleep, work, cook dinner then sleep again until my alarm goes off so in reality I don't have much of a life while taking this amount of meds.
Sadly I would never be able to afford to buy the cream as I'm a single parent and on a low salary plus trying to put some away for my daughter who's gong to uni in September.! I will just have to hope that it becomes available on the nhs soon.
Thanks again for the information :)
Hi Laura,
Really sorry to hear you are in lots of pain the whole time and are experiencing the side effects. I was on Amitriptylene for several months and just couldn't stand the side effects. I've read several posts since joining and you seem like a real trooper :) I haven't tried oral gabapentin yet and am going to trial the gel first (hopefully arriving by tomorrow or monday). If it does work, the first thing I'm going to do is to play tennis all day :)
The thing is, now I've increased my dose of gabapentine to this amount i'm not in loads of pain, the pain is there but nowhere near as bad as it was but I now have to contend with other side affects. I had lost 21lbs before starting Gabapentin but now it's now going back on even though I am able to do some types of exercise. I am in a no win situation, if I don't take meds I can't do anything but if I do take them then I put on weight and can only manage the gym if I go at 6 am before work otherwise I fall asleep..
I really hope you find relief with the cream and can spend hours on the tennis court.
I know I moan about the sied affects BUT Gabapentin has been a life saver for me and my pain, and you can always start off on low dose I used to take 3x300mg a day which worked well for a long time. It only stopped working after I was extreamly poorly.
Good luck
Hi Laura
I see Dr Bennett every 6 months at Kings and I can confirm that he is worth the trip, Not only is he a lovely man but he really knows his stuff where pain is concerned and sits on the London Pain Consortium. I have also been taking part in some medical trials with his PHD students who are studying pain and brain activity and trying to find ways to "switch off" the sodium channel mutation that causes the pain in primary EM which is the type I have. I don't live far from Kings so if you fancy meeting for a coffee afterwards I'd be happy to come and meet you to see how you got on.
I am also a patient at the Royal Free in Hampstead where the rheumatology team also have some experience in EM so this could be another avenue worth exploring.
best wishes
Jayne
Hi Jayne, can I ask what sort of treatments Dr Bennett offers? So far I've just been prescribed Amitriptylene, Gabapentin and am undergoing a series of sympathetic nerve blocks; and I'm about to try an Amitriptylene topical gel. Just wondering if there were some other treatments not described in the academic papers I've read?
Best wishes,
Mike
Hi Jayne, thanks, a cuppa sounds lovely. I'm actually worried about the travelling and parking in the area (I looked online at NHS website for the hospital and it says that there is very little parking) Maybe you could give me a little advice on parking etc..??
I feel much happier knowing that I will be seen by somebody in the team that knows EM, thanks for putting my mind at rest. I think I am going to have to try and reduce my Gabapentin before driving there because my concentration is so poor while taking it.
I didn't even know I was getting an appoinment so was excited to see that my pain management specialist had followed through with his promise and found me a specialist in the uk. Getting the letter yesterday was the first I knew about it. Maybe Dr Bennett will refer me to the Royal free in Hampstead Rheumatology department...?? I have only seen a rhuematologist once when I was first diagnosed but then never had any follow up appointments which I have later found out via patients on here that it's unusual. Maybe now the ball is rolling I will get seen by all the professionals needed to treat EM effectively.
Thanks again Jayne
I've just recieved another appointment at Kings College Hospital in the Neurophysiology Department to have an EMG. I am thrilled that things are starting to move ahead for me...!
Hi Mike
I take a very similar combination of SSRIs and a calcium channel blocker (Gabapentin caused me terrible pains in my feet when I tried that) but it might be worth asking to try different combination of these drugs to see if any of them work better for you. I also use Lidocaine patches which are like nicotine patches which infuse a pain relief drug through the skin, and I have an infusion of Iloprost which is a vasodilator every 6 months at the Royal Free. Iloprost is used to treat Raynauds and Scleroderma but certainly helps me too.
best wishes
Jayne
mnp said:
Hi Jayne, can I ask what sort of treatments Dr Bennett offers? So far I've just been prescribed Amitriptylene, Gabapentin and am undergoing a series of sympathetic nerve blocks; and I'm about to try an Amitriptylene topical gel. Just wondering if there were some other treatments not described in the academic papers I've read?
Best wishes,
Mike
Hi Jayne thanks so much for your reply :) For me it seems that my toes/feet are somewhat hypersensitive after nail removal surgery in both my big toes 1 year ago. I've not been diagnosed with EM per se but have been told it could be a sub type of CRPS/EM. I'm not sure if EM can be triggered by interventions or not or whether it is simply genetic as Dr Bennett emailed me. I've found conflicting evidence for this.
The capilliaries in my toes vasodilate causing heat, redness, swelling and stinging needle like pain from heat sources (showering for example) and from too much exertion (walking for more than 30 mins), running etc; relieved if I raise my feet above my heart, much like EM. The closest thing I can relate it to, someone whacking each toe with a hammer and the sensations after that. So I really need to find something that increases vasoconstriction to reduce the redness/swelling/pain flare-ups whilst under exertion if that makes sense?
Blood test showed that my noradrenalins were all OK, but i can't help think that my toes could be hypersensitive to this when it is generated upon exertion. Something is a trigger for my symptoms flaring up and I'm desperately trying to figure out what it could be to try and regulate it.
From a quick search it looks like Calcium Channel Blockers increase vasodilation, so I'm not sure that would help me. I've not heard of Iloprost before but looks like it also increases vasodilation? I think it would be worth trying lidocane patches as it might mask whats going on.
Would seriously appreciate your thoughts! Thanks again,
Mike
Hi Mike
I'm no expert, please understand that! But I understand that EM can also be brought on by surgey and/or trauma so it could still be the case with you. I believe that this sort of secondary EM is more common too. Calcium Channel Blockers and Iloprost do increase vasodilation so it is a bit of a mystery as to why they help - but then everything about EM is a bit of a mystery!
Have you visitied the TEA website www.erythromelalgia.org? It's worth signing up to for the articles and other contacts as it is a global charity for EM.
I know the pain you descriobe only too well!
take care
Jayne
Hi there.
I don’t know about this hospital although I saw a EM specialist in london at hammersmith hospital/college (east acton). A man there called dr anan (not sure on spelling) has been dealing with EM patients for over 30 years and I was impressed as he knew his stuff! And carried out different tests and joined up with my neurologist on getting ideas for meds. I’m from scotland so had to travel away down to London (only had 2 weeks notice!!) but to get to see him my neurologist arranged it all…and right beside the hospital tht have apartments you can sty for about £50 a night if your travelling from a distance 
Hope this helps!
Thanks for the replies.
I am still deciding whether to drive down to london or to catch the train, both of these options are scary, I will have two change overs if going by train but it does stop right outside the hospital. Or.... drivig 2 1/2 hours there and then 2 1/2 hours return... I am not so keen on driving and this has been intensified since increasing to 3000mg of gabapentin, my concentration is shot.
Arrggh desision desisions....
Good job it's not for another 7 weeks..!
When I travelled from Glasgow to London it was a 6 hour journey - nightmare then had to get two more trains! Was worth the journey though. lauraflora1 said:
Thanks for the replies.
I am still deciding whether to drive down to london or to catch the train, both of these options are scary, I will have two change overs if going by train but it does stop right outside the hospital. Or.... drivig 2 1/2 hours there and then 2 1/2 hours return... I am not so keen on driving and this has been intensified since increasing to 3000mg of gabapentin, my concentration is shot.
Arrggh desision desisions....
Good job it's not for another 7 weeks..!
Slightly miffed today, came home to a letter informing me that one of my appointemts have been moved to next Tuesday, which will mean travelling to London two weeks running, twice the cost and twice the worry about driving all that way. I have ruled out the train as it will cost me £100.30 for the one tuesday and £94 for the one the following Friday.! At least the app wasn't put back because that would have been depressing, I've been counting down the days.