We are considering contacting Dr. Jay Cohen in California for a consult regarding my sister's Erythromelalgia. We have read a lot about him and his research, also through this website.We figured he may be able to help since the doctors here don't really have a clue....
I am wondering if anyone has had a consult with him or has been in touch with him about EM? I would be really interested to hear your experiences with him. Is he really THE expert in the field? Has anyone tried his treatment with magnesium?
Nicole, you don't have to go to the USA, there is Dr Joost Drenth at Radboud University in Nijmegen. I see a wonderful doctor here in Scotland called Professor Jill Belch, who I can recommend highly. There is also Dr Knute Kvernebo, I am not sure if he is in Oslo or in Sweden.
If you can't get help in the Netherlands, as an EU citizen, you could see Prof Belch for free, I can't imagine that Dr Cohen would know anything she doesn't. She is truly brilliant, and if your sister has a disease other than erythromelalgia, she may know what it it.
I don't think Dr Cohen is THE expert. I can't speak for other doctors, as I don't know about them, but I know Prof Belch is a world-reknowned expert and that Dr Drenth has done important research into EM, especially the inherited form, and has been involved in research that has attracted funding from The Erythromelalgia Association. In the USA, I know that Dr Waxman at Yale is involved in the same research as Dr Drenth. You don't need to leave the Netherlands, or if you do, you only need to go as far as Dundee, Scotland. As I live nearby, I'd be happy to help in any way I can.
Thanks for your reply! We were not planning to already go to the usa, we first wanted to try a telephone consult and figured: what have we got to lose? Do you know of anyone who has done a phone consult with him?
Your doctor in scotland sounds great too. Do you think it would be ok if we contacted her? Do you have a phone number or email address for her?
Of course we have heard of doctor drenth. We asked my sister’s doctor to contact him, but she stated he only knew about inherited em and so wouldn’t be able to help as my sister’s em is not inherited… Whatever, it’s not like she is an expert on the illness herself either! We asked again though, and i think she is going to contact him now.
I will keep you updated!
I'll see if my father has her email address. For a telephone consultation, call the switchboard (they'll answer with "NHS Tayside") on 00 44 1382 660111 and ask for Professor Belch's university secretary. I find that the university secretary sees her more often than the ward secretary.
I really hope that you will be able to get a phone consultation with Prof Belch, she is very intelligent and actually took on my sister as a patient, even though my sister's disease is a neurological one! Prof Belch got her well enough to be able to fulfill her lifelong dream of becoming a nurse.
I also hope that you can see Dr Drenth, while his research may be into inherited EM that doesn't mean that he doesn't know anything about non-inherited EM.
I will be thinking about your sister (plus you and your family), it's good to know that you'll keep us up to date with how she is.
I'm actually going into hospital for the day in about 6 hours. There is a small chance that Prof Belch will come and see me while I'm in there. If she does, I will mention that your family might be getting in touch and find out if she would be able to give a telephone consultation.
I'll probably be on again tomorrow, as I will most likely still be feeling the effects of my lidocaine infusion tonight.
That would be awesome, thank you so much. We really appreciate it. Please let me know what Prof. Belch says. If she would be up for a telephone consultation that could be very helpful for us. We would also be happy to pay her for her efforts - I am not sure how that works across the EU.
I hope you are feeling better from your lidocaine infusion! Does the infusion help much for you?
Unfortunately, I didn't see Prof Belch yesterday, it turns out that she's in Norway (I think) seeing someone who also specialises in EM. I have to ask her about my treatment, so she will probably phone me when she gets back. I'll mention your sister when she does.
I find the lidocaine helpful, and it also helps any neuropathic pain, so might help your sister with the shooting pains she is getting at the moment. It has to be intravenous, rather than the patches, as it works differently (and no, you don't go numb all over!). It can make you feel drunk while you are having it and most people are tired after it. I find it takes a few days to work, but it does help my pain for about a week afterwards. Your sister may well get a better effect, as I seem to metabolise lidocaine very quickly.
I hope I'll hear from Prof Belch soon, but if I don't, just contact her university secretary, who is very helpful.
I actually flew to San Diego to meet with Dr Cohan. He is a wonderful man but I have to agree with the post made earlier, where the feeling was that he has moved on since treating his own EM. Although he did give me some suggestions on possible treatments, I am not sure I would spend the money to fly there to visit with him again. In fact, the information I was given while in his office is the exactly same information you can get from his webpage or from MedSense. You can go to either place on print off the exact same information he gave me. After paying him over $300 for the visit (he doesn't accept insuance) I needed a letter written for my employer. I called his office and was billed $35.00 for his writing of the letter; which I honestly believe was written by receptionist. Please don't take what I am saying as being critical or unappreciative;I am very appreciative of the time he spent with me. I just felt I needed to give my honest opinion of my visit with him and how beneficial my visit with him was as far as treatment of my EM.
Hi, thank you all so much for your replies - they are very helpful. Lauri, I see your response as exactly that: a very useful insight from someone with experience. Did any of the information/ treatments/ medication Dr. Cohen gave you help with your EM?I am sorry to hear the Magnesium treatment didn´t work out for some of you - I read it is very important to take the right dosis...?
After discussing things with my sister and family and passing on the replies from this forum, we have decided we are first going to pursue contacting Dr. Drenth (the professor here in the Netherlands who did research on inherited EM) and Professor Belch who is in Scotland (Starsmurf - we are going to call her assistant soon to see what our possibilities are regarding speaking with her), which is obviously much nearer for us. Dr. Cohen we can always still call if other things don´t work out.
Nicole, I am so glad you didn't see my response as some kind of slam on Dr Cohan. It really wasn't intended to be that. I just honestly wanted to share my experiences with other that are going through this awful disease. To answer your question about any of the medication he advised working for me it is so hard to say. During his consultation he did tell me that not only does it take the right combination of certain medications but also takes the right dosages of each of those medications before you will really know if they are working. He informed me that it could take years of hit and miss trials with these medications; not really encouraging to say the least. Were you able to find the information that Dr Cohan has published? If not please let me know and I will try to send you the link.
I am going to ask a huge favor. With your sister being closer to Dr Drenth and possibly may go to see him, I'd like to ask you if you would mind sharing the information she learns once she sees him. As you can imagine, those of us with this sometimes become desperate for any sign of possible treatment that may help us live with this disorder.
I'm currently taking part in a trial of IV Lidocaine, which is having promising results. Also, my consultant, the above Professor Belch, is talking to a fellow expert in Norway (she was supposed to go this month but fell sick) to see if he has any possible treatments. Obviously, if I hear anything, I will let the site know about it.
I would also be interested to hear what Dr Drenth suggests. I think he sounds like a great doctor, as he wrote in the TEA newsletter that it was the suffering of EM patients that drives him in his research into the disease, when those around him question why he works with such a rare disease.
I am very interested to hear about how you got involved with the lidocaine trial. Is this something your current Dr just got you involved with, or have you had to travel elsewhere to get involved with this trial? Can you tell me more about how it works? I read above that you have the lidocaine weekly? That they only last for about a week? I'm curious to know about how much of the pain is relieved from the actual IV? My pain was pretty much localized to my hands, feet, and ears for the last 5 years. Within the last couple of years it has moved more into my face (nose is red most of the time). Recently the burning has moved down my throat and actually into my eyes. No idea if it is related to the EM or not. I have not heard of anyone else having problems with burning in those areas, however, the burning is so similar to other areas that I find it hard to believe it is not related. I am very interested to know if the lidocaine IV would even give me partial pain relief. Thanks again.
starsmurf said:
Lauri,
I'm currently taking part in a trial of IV Lidocaine, which is having promising results. Also, my consultant, the above Professor Belch, is talking to a fellow expert in Norway (she was supposed to go this month but fell sick) to see if he has any possible treatments. Obviously, if I hear anything, I will let the site know about it.
I would also be interested to hear what Dr Drenth suggests. I think he sounds like a great doctor, as he wrote in the TEA newsletter that it was the suffering of EM patients that drives him in his research into the disease, when those around him question why he works with such a rare disease.
I get the IV lidocaine every three weeks at the moment, that is purely because they cannot fit me in more often, as it is so popular with people with other forms of neuropathic pain. It actually seems to make my EM worse while I have it and for a couple of days afterwards. For about a week after that, it gives me either no flares or much reduced flares. I am part of an international trial of IV lidocaine for neuropathic pains, different centers are using different doses (I am on 1g of lidocaine in 500ml, given normally at 125ml per hour). My normal EM specialist put me on it, so I don't have to travel. The lidocaine seems to work by calming down the very sodium channels that have been shown to be involved in the inherited form of EM and may very well be involved in all EM. People with both primary and secondary EM have found relief with the lidocaine.
As lidocaine is already licensed and can be given by a doctor who is happy to do so, it is certainly worth trying. It could probably be given at your local hospital, as long as your doctor there spoke to someone who is involved in giving it, so that they know exactly how it should be done and what to watch out for. There are various side effects, some of which can be dangerous - such as seizures - but they are preceeded by warning signs such as tingling lips and mouth or hearing disturbance. Like most other patients, I usually get a feeling that is a little like being drunk. Some patients do get nausea and headache, but if you were experiencing that, they would lower the rate of infusion.
The only way to know if the lidocaine IV would help is to try it, unfortunately. It would seem like you have very little to lose.
Thank you so very much. I am going to check into this. Like you mentioned, what do I have to lose?
starsmurf said:
Lauri,
I get the IV lidocaine every three weeks at the moment, that is purely because they cannot fit me in more often, as it is so popular with people with other forms of neuropathic pain. It actually seems to make my EM worse while I have it and for a couple of days afterwards. For about a week after that, it gives me either no flares or much reduced flares. I am part of an international trial of IV lidocaine for neuropathic pains, different centers are using different doses (I am on 1g of lidocaine in 500ml, given normally at 125ml per hour). My normal EM specialist put me on it, so I don't have to travel. The lidocaine seems to work by calming down the very sodium channels that have been shown to be involved in the inherited form of EM and may very well be involved in all EM. People with both primary and secondary EM have found relief with the lidocaine.
As lidocaine is already licensed and can be given by a doctor who is happy to do so, it is certainly worth trying. It could probably be given at your local hospital, as long as your doctor there spoke to someone who is involved in giving it, so that they know exactly how it should be done and what to watch out for. There are various side effects, some of which can be dangerous - such as seizures - but they are preceeded by warning signs such as tingling lips and mouth or hearing disturbance. Like most other patients, I usually get a feeling that is a little like being drunk. Some patients do get nausea and headache, but if you were experiencing that, they would lower the rate of infusion.
The only way to know if the lidocaine IV would help is to try it, unfortunately. It would seem like you have very little to lose.