Hey, I don’t know if you’ve seen what I wrote on the site about it but for the past 7weeks ive been unable to walk or stand on my own it happend over night… My ‘trusted’ neurologist who ive been to for 6 years and i see for my EM admitted me in to her hospital to do tests… but last friday i got told il likley never walk again or gain full sensation bk in hands & it will deteriate so I’m not short term in a wheelchair I now am permanently! My EMG showed that (I’ve always had nerve damage to the sensory nerves) my tests from my last EMG showed my nerve responded slighltly… Now its not responding, for a full 24HOURS no dr came to sit and explain the treatment or were my life was now going? My mum had to phone the neurologist to come tell me this!! And while my neurologists broke the news to me regarding my Erythromelalgia she said she’s done seeing me?!! Who does that, talks to a 17 year old like there’s edno hope and also in the same conversation makes her feel more alone by dismissing the rare condition she knows not many drs know? I’m so let down by our so called ‘medical profession’ so I am now abandend got to just ‘deal with it’ … Worst 2 month of my life, thank god I’ve got my mum! Me and hers just getting through this together. Im strong and determained!! Il get through this and walk and prove that excuse of a dr wrong!! 
Lauren-
I am so sorry to hear how much pain you are in. Do you have names of other neurologists you can try? My son also uses a wheelchair but he can walk short distances if necessary. For the 7 years I have known about EM, the only sure thing is that no two people respond the same way to medication and treatment of the symptoms of EM. Don't give up. If one doctor doesn't know what to do it doesn't mean there's nothing wrong. It doesn't mean there is nowhere else to turn for relief. I hope that your pain will become less intense soon. I would be happy to share what Drew has tried and what he is currently taking.
No, she was the only one near me and all her associates so no one 
I’m currently on Gabapentin which I used to take 1200 3x a day butim now cut down to 600mg 3x a day plus 2 dihydrocodeine 3x a day… The dihydrocodeine is working really good just now. They gave me folic acid to take for the nerves aswell. I’m very allergy prone to meds! Nothing is straight forward in my life! I used to be in a wheelchair just for long distances and when I had reaaal bad pain! But 24/7 is kind of really hard to get used to! Yeah, sure that would be nice of you dawn, thanks.
I'm really sorry to hear what you've been through in the last few weeks, Lauren. Come to Dundee and see my consultant, Prof Jill Belch. It can be hard to get an appointment with her sometimes, because she goes to so many conferences, but it is worth waiting for. There is another doctor there , Dr John Dick, who also knows about EM but ask to see Prof Belch, as you'll need a expert on EM. Prof Belch is a lovely person, she's very intelligent and if anyone can get you out of that wheelchair, it's her. As her speciality is Vascular Medicine, you can see her and stay as a patient of your nuerologist too. Your GP can refer you to her, as I can assure you that there are no other experts on EM in Scotland.
I am truley very sorry.I thought mine was bad but I can walk about 75 feet other wise I use a wheel chair. I hope you prove your poor excuse of a doctor wrong I just wish some would find a cure or somthing to relieve the pain.hang in there I will pray for you
Thank you! Yeah I remember you mentioned her before as I was saying to my mum but had forgotten her name! Defiantly going to tell my gp about her soon as possible!!
starsmurf said:
I’m really sorry to hear what you’ve been through in the last few weeks, Lauren. Come to Dundee and see my consultant, Prof Jill Belch. It can be hard to get an appointment with her sometimes, because she goes to so many conferences, but it is worth waiting for. There is another doctor there , Dr John Dick, who also knows about EM but ask to see Prof Belch, as you’ll need a expert on EM. Prof Belch is a lovely person, she’s very intelligent and if anyone can get you out of that wheelchair, it’s her. As her speciality is Vascular Medicine, you can see her and stay as a patient of your nuerologist too. Your GP can refer you to her, as I can assure you that there are no other experts on EM in Scotland.
Is that another word for Tegretol? As i can never take that again as I took life threatening allergic reaction Steven Johnson Syndrome (got pics of that on my page) from that. Going to mention to my gp about the dr starsmurf mentioned as my neurologist was the only important one in a hospital that’s about to become the biggest in Scotland! So it will be very tricky! Saw my gp pretty much after that happend and even he told me to prove her wrong, however he has to wait on the neurologists letter first which usually takes a while!.
GothGoddess said:
Also note I had allergic reactions in my throat immediately with the Carbamazepine tablets but other than a bit of burning I was fine with the Carbamazepine Liquid so it may be worth trying
No, don’t know what ingredient in tegretol caused it so just Tegretol as a whole is a no go! As I read somewhere that Steven Johnson syndrome allergic reaction is been noted quite a lot with Tegretol. So now any meds I try have to go through dermatology first, so the ones that cause bad allergic reactions I can avoid.
Has your GP agreed to refer you to Prof Belch yet? I hope that you can see her soon and I promise you, she's wonderful. She doesn't give up and will actually sit down with you and think things through.
When I saw her a few months ago, she started by saying she didn't have anything to offer me, an hour later, we came out with three treatment plans. She is trying to use drugs that didn't work when you took them the first time, but that can work when taken along with another drug. She also knows a lot about other diseases (such as neurological ones), while she might not know what to treat it with, she'll know someone who does.
She's very caring and would never treat you the way that neurologist did. I hope you can see her soon, fingers crossed!
No, not been able to meet up with my GP yet, but got an appointment for 2morro and I’m hoping to bring it up. She sounds amazing and very intrested in EM which is hard to find! Hopefully my GP agrees to it!
starsmurf said:
Has your GP agreed to refer you to Prof Belch yet? I hope that you can see her soon and I promise you, she’s wonderful. She doesn’t give up and will actually sit down with you and think things through.
When I saw her a few months ago, she started by saying she didn’t have anything to offer me, an hour later, we came out with three treatment plans. She is trying to use drugs that didn’t work when you took them the first time, but that can work when taken along with another drug. She also knows a lot about other diseases (such as neurological ones), while she might not know what to treat it with, she’ll know someone who does.
She’s very caring and would never treat you the way that neurologist did. I hope you can see her soon, fingers crossed!
I'll keep my fingers crossed. As promised, I'll mention you when I see her on the 13th.
If your GP suggests Dr John Dick (he's on the same team as Prof Belch and knows about EM), insist on Prof Belch. The severity and type of EM you have, plus your other problems, mean that Prof Belch would be better. I don't think Dr Dick has treated anyone with the primary early-onset form.
Thank you so much, I’d really appreciate that! If it would be possible, could you try get her email?. Wasnt my GP on 
so will have to wait until after bank holidays to see when he is in.
Ahh, I see! Thanks for advice and info, really appreciate .x
hi lauren;great response from Dawn&i also no what it is like to have an un sympa thetic DR. always be prepared never to say no &be ready for the unexpected.Just to let you know you are not alone. cheers