Hi Laura, sorry you've been a bit messed around. I had a nerve block last night on my left (2 in each foot now). I mentioned to my pain specialist Dr Bennett at KCL and he's going to organise me an appointment. So very very keen to hear how yours goes when you make it down there. Hope you get there with as little discomfort as possible and good luck :)
Hi Laura,
Make sure you find out if you can claim some or all of your travelling costs back. In Scotland you can do that if you get Disability Living Allowance, I don't know about England. If you don't already get DLA then go it, as you can get it backdated and claim the travel costs when it's awarded. It's not means tested so you can work and still get it. As a single mum, it can make a big difference!
Hi Mike,
I'm trying infusions of Lidocaine, intravenous is best but they can do it sub-cutaneous in a more concentrated form if need be. It is delaying the onset of my flares so I get about 14 hours per day without the pain. I found the patches not to work and I saw a paper that said the creams like the ones you describe usually only work for a short time (like a few weeks or months) and then lose their effectiveness.
I am hoping to persuade my consultant to try giving me ketamine infusions as well as the lidocaine, if she says yes, I'll let you know if it works.
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 starsmurf, thanks for the info. I haven't tried lidocaine infusions (yet). Is this something that you inject yourself or have to have done at a clinic? The transdermal gel works 70% effective for about 5-6 hours I find. I'm also awaiting the AmiKet gel/cream to finish trials as this is also a transdermal based treatment. Have you tried lidocaine patches? Thats something I'd like to look at too. Currently trying Lyrica (pregabalin - type of gabapentin) on my thrid day and is making feet much much worse and nearly constantly red. I'm going to stick with it for 1 week to see if it does help in any way.
Apreciate knowledge on ketamine infusions when you get them.
Thanks a lot.
HI Lauren
What sort of specialist is Dr Anan? Is he a rheumatologist or pain specialist for example?
thanks
Jayne
Lauren said:
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!
Hi Mike,
I have tried lidocaine patches, they would numb the area for a couple of hours and then the pain would come back worse than it was before. The lidocaine infusion is given in a hospital as a day patient.
I'm in Scotland too, you certainly don't need to travel to London, just to Dundee. I'm under Prof Jill Belch at Ninewells Hospital there, she has been a brilliant expert on EM for at least 25 years, she wrote many textbook essays on EM and Raynauds. A memeber of her team, Dr John Dick, has also got a lot of experience with EM. There is a medical physics department where they can do a lot of tests and you could have lidocaine infusions, or iloprost if your EM is of a type that would respond to that. I don't know why you had to travel all the way down to London, perhaps your neurologist just assumed there were no experts in Scotland.
I hope that helps and relieves you of the need to travel south regularly and allows you to see an EM expert whenever you need one.
mnp said:
Hi starsmurf, thanks for the info. I haven't tried lidocaine infusions (yet). Is this something that you inject yourself or have to have done at a clinic? The transdermal gel works 70% effective for about 5-6 hours I find. I'm also awaiting the AmiKet gel/cream to finish trials as this is also a transdermal based treatment. Have you tried lidocaine patches? Thats something I'd like to look at too. Currently trying Lyrica (pregabalin - type of gabapentin) on my thrid day and is making feet much much worse and nearly constantly red. I'm going to stick with it for 1 week to see if it does help in any way.
Apreciate knowledge on ketamine infusions when you get them.
Thanks a lot.
Thanks for that info on the specialists. I'm in Surrey at the moment, so going up to London will hopefully not be too difficult. Just awaiting to get my appointment at the moment with Dr Bennett at Kings College Hospital.
This Lyrica suddenly started to have an effect yesterday (having had 4 days of continuous flareups - nearly stopped taking it). I managed a 30 mile bike ride and got home to find fairly normal colour and hardly any edema. Used in combination with this Amitriptylene transdermal gel I'm just hoping that I may have finally (after 1 year) found a way to manage and control it. Still early days yet and need to do some walking to test them out.
Hi mnp, I've had both my appointments now and was left feeling anxious after the first one, the EMG was fairly painful but the results were good. The neurophyoligist said he thought I had another pain condition of the CNS as well as EM. He pushed on certain points on my body which I later found out were the pressure points used to determine fibromelalgia, all points bar one felt like I had a bad bruise on it. After my appointment with Dr Bennett tho I felt a bit more positive. He did various tests and said he thought I had secondary EM (which he is less familiar treating) but he's doing genetic testing just to be sure. I also had 9 bottles of blood taken (not sure what for). I will have to go back for a biopsy and brain scan soon too. I felt he gave me a thorough check over and answered my questions. He said as long as I have a good pain specialist then I shouldn't need to keep going back too often.
mnp said:
Hi Laura, sorry you've been a bit messed around. I had a nerve block last night on my left (2 in each foot now). I mentioned to my pain specialist Dr Bennett at KCL and he's going to organise me an appointment. So very very keen to hear how yours goes when you make it down there. Hope you get there with as little discomfort as possible and good luck :)
Thanks Star, Luckily I managed to get most of the cost refunded Friday, they only paid for my costs and not the cost of my sister travelling with me but that halved the cost so was really pleased..!
starsmurf said:
Hi Laura,
Make sure you find out if you can claim some or all of your travelling costs back. In Scotland you can do that if you get Disability Living Allowance, I don't know about England. If you don't already get DLA then go it, as you can get it backdated and claim the travel costs when it's awarded. It's not means tested so you can work and still get it. As a single mum, it can make a big difference!
Dr Bennett has recomended I try licodaine patches for the nights which are the worst time for me at the minute, I'm not due to see my GP for a couple of weeks so will ask him then. Hopefully that weill give me some relief at night.!
starsmurf said:
Hi Mike,
I have tried lidocaine patches, they would numb the area for a couple of hours and then the pain would come back worse than it was before. The lidocaine infusion is given in a hospital as a day patient.
I'm in Scotland too, you certainly don't need to travel to London, just to Dundee. I'm under Prof Jill Belch at Ninewells Hospital there, she has been a brilliant expert on EM for at least 25 years, she wrote many textbook essays on EM and Raynauds. A memeber of her team, Dr John Dick, has also got a lot of experience with EM. There is a medical physics department where they can do a lot of tests and you could have lidocaine infusions, or iloprost if your EM is of a type that would respond to that. I don't know why you had to travel all the way down to London, perhaps your neurologist just assumed there were no experts in Scotland.
I hope that helps and relieves you of the need to travel south regularly and allows you to see an EM expert whenever you need one.
mnp said:Hi starsmurf, thanks for the info. I haven't tried lidocaine infusions (yet). Is this something that you inject yourself or have to have done at a clinic? The transdermal gel works 70% effective for about 5-6 hours I find. I'm also awaiting the AmiKet gel/cream to finish trials as this is also a transdermal based treatment. Have you tried lidocaine patches? Thats something I'd like to look at too. Currently trying Lyrica (pregabalin - type of gabapentin) on my thrid day and is making feet much much worse and nearly constantly red. I'm going to stick with it for 1 week to see if it does help in any way.
Apreciate knowledge on ketamine infusions when you get them.
Thanks a lot.
Hi Laura, many thanks for posting your results with Dr Bennett. Sorry it was painful, but glad you got some clearer treatment directions and diagnosis as a result. I'm in the throws of getting an appointment with him and look forward to what he has to say and will of course report back :)
Hi Jayne - sorry to barge into your discussion here, but I am getting a referral to the Royal Free, to see Chris Denton in Rheumatology. Have you had good experiences there? Having read about Dave Bennett, I'm just wondering if I should have asked to be referred to him at Kings instead. I'm in Devon...
Frances
Jayne Nelson said:
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
has anyone been seen by professor denton
at the royal free
I didn't see him in person but another member of the Rheumatology team there, Dr. Ong, and had various tests done there. I thought they were great - very helpful and spent a lot of time with me.
Frances
In pain said:
has anyone been seen by professor denton
at the royal free
Hello In pain,
I have seen Professor Denton at Royal Free, but not as the main part of my appointment. He seemed to be kept informed of whatever had gone on during my consultation which in my case was with Dr. Emma Derret-Smith and also the results from the tests (thermography and capillaroscopy) and then came in to confirm the diagnosis of EM and the planned course of treatment for me.
Everyone I saw was very helpful and explained everything and above all listened, there was no sense of being rushed through the system. All in all a very positive experience.
Tillyp
In pain said:
has anyone been seen by professor denton
at the royal free
Hi Tillyp, hope you don't mind me asking, but what sort of treatment has been planned for you as a result of your trip to the Royal Free?
I've got my appointment at Kings College to see Dr Bennett next week, so will report back whats said and done.
tillyp said:
Hello In pain,
I have seen Professor Denton at Royal Free, but not as the main part of my appointment. He seemed to be kept informed of whatever had gone on during my consultation which in my case was with Dr. Emma Derret-Smith and also the results from the tests (thermography and capillaroscopy) and then came in to confirm the diagnosis of EM and the planned course of treatment for me.
Everyone I saw was very helpful and explained everything and above all listened, there was no sense of being rushed through the system. All in all a very positive experience.
Tillyp
In pain said:has anyone been seen by professor denton
at the royal free
Hello mnp, I was started on a drug called Losartan and am now awaiting treatment for Iloprost infusions. Did a blog yesterday telling all about the appointment I had and the results. I shall also be having nerve conduction and single fibre studies done at the same time as the Iloprost.
Do let us know how your appointment goes as it will be helpful to compare notes.
Tilly
mnp said:
Hi Tillyp, hope you don't mind me asking, but what sort of treatment has been planned for you as a result of your trip to the Royal Free?
I've got my appointment at Kings College to see Dr Bennett next week, so will report back whats said and done.
tillyp said:Hello In pain,
I have seen Professor Denton at Royal Free, but not as the main part of my appointment. He seemed to be kept informed of whatever had gone on during my consultation which in my case was with Dr. Emma Derret-Smith and also the results from the tests (thermography and capillaroscopy) and then came in to confirm the diagnosis of EM and the planned course of treatment for me.
Everyone I saw was very helpful and explained everything and above all listened, there was no sense of being rushed through the system. All in all a very positive experience.
Tillyp
In pain said:has anyone been seen by professor denton
at the royal free
tillyp said:
Hello mnp, I was started on a drug called Losartan and am now awaiting treatment for Iloprost infusions. Did a blog yesterday telling all about the appointment I had and the results. I shall also be having nerve conduction and single fibre studies done at the same time as the Iloprost.Do let us know how your appointment goes as it will be helpful to compare notes.
Tilly
mnp said:Hi Tillyp, hope you don't mind me asking, but what sort of treatment has been planned for you as a result of your trip to the Royal Free?
I've got my appointment at Kings College to see Dr Bennett next week, so will report back whats said and done.
tillyp said:Hello In pain,
I have seen Professor Denton at Royal Free, but not as the main part of my appointment. He seemed to be kept informed of whatever had gone on during my consultation which in my case was with Dr. Emma Derret-Smith and also the results from the tests (thermography and capillaroscopy) and then came in to confirm the diagnosis of EM and the planned course of treatment for me.
Everyone I saw was very helpful and explained everything and above all listened, there was no sense of being rushed through the system. All in all a very positive experience.
Tillyp
In pain said:has anyone been seen by professor denton
at the royal free
Hope you don't mind me jumping in. I'm new to on-line discussions so don'tknow the ropes. Was interested in mnp talk of amitriptyline transdermal preparation. Do you mind me asking where you got this from? Am keen to find source in UK. Wondered if it was Dr Bennett at Kings? Also would you know when AmiKet likely to finish trial? Understand that we can get it on special prescription once it is ok's by FDA?
ajh
lauraflora1 said:
Dr Bennett has recomended I try licodaine patches for the nights which are the worst time for me at the minute, I'm not due to see my GP for a couple of weeks so will ask him then. Hopefully that weill give me some relief at night.!
starsmurf said:Hi Mike,
I have tried lidocaine patches, they would numb the area for a couple of hours and then the pain would come back worse than it was before. The lidocaine infusion is given in a hospital as a day patient.
I'm in Scotland too, you certainly don't need to travel to London, just to Dundee. I'm under Prof Jill Belch at Ninewells Hospital there, she has been a brilliant expert on EM for at least 25 years, she wrote many textbook essays on EM and Raynauds. A memeber of her team, Dr John Dick, has also got a lot of experience with EM. There is a medical physics department where they can do a lot of tests and you could have lidocaine infusions, or iloprost if your EM is of a type that would respond to that. I don't know why you had to travel all the way down to London, perhaps your neurologist just assumed there were no experts in Scotland.
I hope that helps and relieves you of the need to travel south regularly and allows you to see an EM expert whenever you need one.
mnp said:Hi starsmurf, thanks for the info. I haven't tried lidocaine infusions (yet). Is this something that you inject yourself or have to have done at a clinic? The transdermal gel works 70% effective for about 5-6 hours I find. I'm also awaiting the AmiKet gel/cream to finish trials as this is also a transdermal based treatment. Have you tried lidocaine patches? Thats something I'd like to look at too. Currently trying Lyrica (pregabalin - type of gabapentin) on my thrid day and is making feet much much worse and nearly constantly red. I'm going to stick with it for 1 week to see if it does help in any way.
Apreciate knowledge on ketamine infusions when you get them.
Thanks a lot.
Hi ajh, I got the gel made up by Specialist Pharmacy in London: http://www.specialist-pharmacy.com/
They just needed a prescription from my pain management specialist and cost £50.
The AmiKet is in late stage trials, but it may still be a year or longer before its available to GP's. Dr Bennett is now at Oxford and I'm being referred to him there, as Dr Hadden I saw at Kings College said he didn't know that much about EM. I've been semi-diagnosed with a form of EM by him though. I'm being prescribed some very strong steroids to try, having a nerve biopsy at my ankle and he's going to prescribe a whole bunch of drugs to start trying to see how they interact with it, starting off with Nortriptylene (in combination with Pregabalin that I'm also taking) as the side effects are apparently much less to deal with.
Good news is that after 6 sessions of acupuncture, I'm seeing some improvements :) Heat tolerance seems to be really improving, and doesn't seem attributable to the colder weather because I can now shower without a flareup and can walk a little further. Will keep people posted on my appointments and drug treatments in the coming weeks.
ajh said:
Hope you don't mind me jumping in. I'm new to on-line discussions so don'tknow the ropes. Was interested in mnp talk of amitriptyline transdermal preparation. Do you mind me asking where you got this from? Am keen to find source in UK. Wondered if it was Dr Bennett at Kings? Also would you know when AmiKet likely to finish trial? Understand that we can get it on special prescription once it is ok's by FDA?
ajh
lauraflora1 said:Dr Bennett has recomended I try licodaine patches for the nights which are the worst time for me at the minute, I'm not due to see my GP for a couple of weeks so will ask him then. Hopefully that weill give me some relief at night.!
starsmurf said:Hi Mike,
I have tried lidocaine patches, they would numb the area for a couple of hours and then the pain would come back worse than it was before. The lidocaine infusion is given in a hospital as a day patient.
I'm in Scotland too, you certainly don't need to travel to London, just to Dundee. I'm under Prof Jill Belch at Ninewells Hospital there, she has been a brilliant expert on EM for at least 25 years, she wrote many textbook essays on EM and Raynauds. A memeber of her team, Dr John Dick, has also got a lot of experience with EM. There is a medical physics department where they can do a lot of tests and you could have lidocaine infusions, or iloprost if your EM is of a type that would respond to that. I don't know why you had to travel all the way down to London, perhaps your neurologist just assumed there were no experts in Scotland.
I hope that helps and relieves you of the need to travel south regularly and allows you to see an EM expert whenever you need one.
mnp said:Hi starsmurf, thanks for the info. I haven't tried lidocaine infusions (yet). Is this something that you inject yourself or have to have done at a clinic? The transdermal gel works 70% effective for about 5-6 hours I find. I'm also awaiting the AmiKet gel/cream to finish trials as this is also a transdermal based treatment. Have you tried lidocaine patches? Thats something I'd like to look at too. Currently trying Lyrica (pregabalin - type of gabapentin) on my thrid day and is making feet much much worse and nearly constantly red. I'm going to stick with it for 1 week to see if it does help in any way.
Apreciate knowledge on ketamine infusions when you get them.
Thanks a lot.