The last 6 months has seen an increase in my symptoms, especially in my legs and arms (neuropthatic pain). It has really got me down, so much so I was desperate to speak with either my MS nurse or consultant. I emailed my nurse twice and heard nothing; I ended up faxing my consultant’s secretary and eventually got a reply. It was one line long (after a very detailed letter from me), saying that he was going to refer me to a pain clinic.
Now I acknowledge I have tried most of the anti-epileptic drugs used for neuropathic pain over the last 10 years. They work initially then become less effective. But part of me feels I’m being “fobbed off”. But am I being harsh? Is, perhaps, a pain clinic the best place for me? I’d welcome your thoughts. I just sense that he sees I can walk and thinks “she’s OK”…
Hi, well not everyone with a disablity looks disabled. So just going by the way a person looks is wrong. I would hope a neuro takes that into consideration.
Many symptoms are hidden…pain is a major one.
As you have tried many different meds to help and nothing does long term, perhaps it would be an idea to try the pain clinic.
I haven`t been to one but am looking for a pain killing med myself, when I see a new neuro next month.
I hope you can find some relief very soon hun.
Hi Sarah,isn’t it wonderful having a bank holiday…Like it means the slightest, as my life is one long holiday.If you’ve been through all the epilepsy pills may I humbly suggest the following
Oromorph,Butrans morphine patches,Tramadol, Diclofenac,Duloxetine
I’ve been discharged from the Pain Clinic at Walton Neuro in Liverpool and told to continue playing Pick’n’Mix with the above and anti epileptics.I’ve been told they cannot help me with the chronic neuropathic pain which completely dominates my life.
I’m back on 15 minutes of fame annually and am wondering what poisonous pet to get for the Neurotic at Christmas.
I’ve also heard of KETAMINE therapy and even the use of METHADONE once the opiates are out of steam.That wasn’t in this country and the Queen will streak down the Mall before NICE sanction that.Oh,don’t forget LDN,as I have heard some club members have had good results on the stuff.SATIVEX and the real stuff are also pretty effective.
Ooh, Special K! I like the idea of Ketamine (but for all the wrong reasons )
I already take Duloxetine and Tramadol and occasional Diclofenac…so who knows what the pain clinic will say. The AEDs I’ve had: gabapentin, topiramate, pregabalin, sodium valproate, carbamazepine and others I’ve forgotten…currently taking zonisamide. I know there are others out there, and I suggested Levetiracetam (Keppra), but no dice from my neuro. Ho hum.
I did a trial for Sativex, liked it, but prefer the real thing. Just getting hold of it is hard.