Wish me luck

[Poppy]

Appointment with Dr de Mello at Wythenshaw on Wednesday. I can't believe how quickly I got this appointment. I'm not expecting a cure but am praying for a proper diagnosis at last.I just hope he's not like all the others who just throw amitriptylene and gabapentin at you and say they can't do anything else. Been there and they just don't work. All reports say he's very kind and really listens to you so I'm hoping I can just explain everything to him without him taking any notice of what others have said over the last 9 years. I just want him to listen and make his own diagnosis.

[helenlegs 11]

Do make sure that you have all of your pertinent symptoms to PN listed first of all. The pelvis is such a complicated area especially if you have other pelvic pathologies, as many often do. At least then he will be able to diagnose those neuropathic symptoms fairly easily and then be able to help from there.
I would hate you to get there and him disregard a PN diagnosis (I'm sure that won't happen) This is your chance to get it right.
Good luck
Helen

[calluna]

I do wish you luck.

Write it all down beforehand, nothing more annoying that coming out of the hospital and realising - but I didn't mention such-and-such!

Will be thinking of you!

[Poppy]

Thank you very much. I am all prepared. MY GP sat me down with him last week while he went through all my records for the past 9 years and printed off everything relevant. All I have to do is add a few little bits I had on computer. I even have a CD with all x rays and scans except for one neck MRI which is not relevant. Symptoms are very simple; original problem for 9 years has stayed the same; not Pudendal N but definite pelvic neuropathy and since March SI pain and pudendal neuropathy. I just don't want to confuse matters with the fibromyalgia and herniated cervical discs although if he treats pain it woudl be good if he could treat everything at once LOL. I did remember last night I'd forgotten to put down that I have 11 thyroid growths. It's stuff like that that don't actually seem to cause any problems that you forget.

[helenlegs 11]

That seems perfect, you don't want to 'clutter' the most pertinent symptoms with erroneous stuff. Let us know how you get on and what he suggests for you.
Take care,
Helen

[Poppy]

What a lovely, incredible, knowledgeable man.
His words."Why have you come to me?" Me- for a diagnosis." Him- Not for a cure? Me- " After 9 years I don't for one minute believe that a cure is possible but I do hope you can ease the pain". Him " I'm amazed, most people are not as realistic as you and come looking for miracles"
When all my pain started 9 years ago I was passed around so many doctors who had no idea what was wrong, that I did my own research and was convinced I had Maigne syndrome but despite being sent to 3 neuro surgeons, 4 pain clinics and numerous other people either no one had heard of it or the one man who had, said he had no idea how to treat it.
My appointment lasted over an hour. Within 10 minutes Dr de Mello announced "You have typical Maigne syndrome". I burst into tears just to hear someone who actually knew what it was. The bad news is that I've had it so long the nerve is too badly damaged to ever recover. I'm stuck with it for life. If it had been treated when I fist knew what it was, it could have been cured.
He surprised me by saying that I've also had pudendal neuralgia for 9 years and that was the cause of my inability to sit down way back then. Again, the nerve is too damaged to attempt any sort of release surgery. I honestly never considered it 9 years ago. I thought it only started this March.
I have to go back in 6 months when a new treatment just may be possible. He's trying me on pregabalin ; a very low dose to start . Because of the severe depression I had when on Gabapentin, this scares me to death but I will try it, He really hates oxynorm and insisted that people just can't get off it; it's so addictive. Heck I'd stop it tomorrow if the pain would go without it.
He is the most straightforward, honest doctor I have ever spoken to. He recommended pelvic floor physiotherapy but having looked at the list that was posted yesterday on this thread, the only two are far to far away from me. He knew both of them well and they were the only two physios that he could recommend. He did say I can try things like myofascial therapy, massage, physio etc for all the related things caused by holding myself so badly for years but they won't help the actual nerve pain.
He did say that actually knowing what's wrong helps people to cope more than anything else; even release surgery and wasn't afraid to say that the strongest pain relief is the mind- something I completely agree with. That's not saying hat it doesn't exist but that we must take control of it as well as taking medication.I think he woudl have sent me for CBT if I hadn't already been referred at my own request.
He was quite upset that his name is out on the internet as he's getting more and more patients who have had PN for so long that there's simply nothing he can do; they come to him with such high hopes and it distresses him when the damage is to severe or too long standing for him to help.
So- there's absolutely nothing he can do. I'm stuck with it for life but I do at least have a definite diagnosis after all these years.

[Charlie123]

So glad everything went well for you today Poppy. Its so nice when you feel that somebody is actually listening to you & can help in some small way. Good luck & let us know your progress

x

[helenlegs 11]

I haven't heard about this problem before but have found some exercises that may be helpful Poppy. http://www.chiropractic-books.com/Maign ... cises.html
I wonder if you went to a good chiropractor who knew their stuff and gave them the relevant info on Maignes syndrome if they couldn't help you. I would ring around and/or e mail some local ones to check it out.
Glad that Dr De Mellow was so lovely but sorry he couldn't help you. Is he saying that he can't help anyone with PN or just long standing sufferers do you think? It's all a bit confusing isn't it?
I can understand the absolute relief and emotional impact from someone medical who does actually listen and then can answer some of your pain questions. Having a diagnosis is so important.
Take care,
Helen

[Poppy]

NO he didn't mean at all that he can't help PN sufferers. Sorry if that wasn't clear. he meant those who'd had it for years where the nerve damage is so severe it's permanent and absolutely nothing will help it. He can give painkillers in that case but that's about it. For early stages especially, physio or manipulation may possibly help; even nerve blocks could possibly give a permanent cure but once the nerve is so badly damaged for as long as mine has been, it will never recover. A delightful man who takes as long as is needed to listen and ask hundreds of questions. I took a list of all the doctors I'd seen and tests I'd had done and he asked about each one; why I'd been sent to them and what the result was and he made his own side notes as he went along. It's just that as his name has become known on the internet he's getting far more of the long standing cases; people like me who have been sent round dozens of different specialities and had no answers and for whom it is now too late.

[calluna]

What a pity that he can't help you - but as you say, at least you now have a diagnosis, at long last. I do hope that the pregabalin helps. And so glad also that you have a referral for CBT, I found this incredibly helpful.

With regard to Dr de Mello's name becoming known for PN - hopefully besides people finding him who have had this for a long time and whom he cannot help, it will also mean that new PN patients, whom he can help, will find him.