Morning All - I hope everyone is feeling suitably “chocolated - up”?
I wonder if anyone has any advise on this one. My husband has rrms and has been lucky enough to be fairly stable (for want of a better word) for the past 5 years or so. Being in this stable state and noting that he is not on any DMDs he only sees a neuro maybe once a year at most.
Just over a month ago he was struck down with, what the GP diagnosed as sciatica and gave him an urgent refferal to the spinal clinic. Well the urgent appointment came through 4 weeks later, we had that last week and they have said its defo not sciatica it must be his MS. In the year since he has seen his neuro, the neuro has changed and trying to get hold of anyone who knew who he would come under now was just ridic. But, luckily enough (I use that term lightly) I also have MS and I have a fantastic neuro team (I am under a different hospital to hubby as I am on Tysabri). My nurse managed to put me in touch with another nurse - the short of it is I managed to get him an urgent neuro appt for tomorrow.
Now Joe has been diagnosed with MS for about 11 years now and I for 5 - you would think that we could sort ourselves out given the experiences we have both been through - but that is not the case.
My question is in regards to his symptons, he has just awful pain pretty much constantly in his leg, a leg that as yet hadnt been affected by ms and he also has random patches of numbness. Now, he is already on gabapentin and amitriptaline for nerve pain (it has been uped by the gp to try and manage for now). I just dont know if this would be classed as a relapse as such, or a progression in his symptons. What do you clever bunch think?
I guess I am trying to 2nd guess what the neuro (one we dont know) will say/do tomorrow. I am just hoping against hope that he can do something as my poor Joe hasnt slept properly for nearly 6 weeks, is in constant pain, pain where on more than 1 occassion he has asked me to take him to a&e. I just cant bare the thought of them not doing anything to help him. From a selfish POV - I am getting exhausted, working full time, trying to keep the house together and kids entertained fed and watered, helping joe get dressed, fed, watered etc etc. As I am writing this I am wondering why I am posting it as its only tomorrow that we go and see the neuro…
hey ho - better out than in as they say!!
sorry if that was a long and dull read!! xx
never apologise on here.
looks like the monster is working hard in your house.
hope joe’s appointment is fruitfull.
don’t forget to look after yourself as well
That sounds horrid. I hope that tomorrow’s appointment is useful. My guess is that specialist neurologists will tend to be more liberal then GPs with the doses they write on the prescribing pad - as long as they are confident that they know what the problem is. All I would suggest is, make sure that your husband does not downplay the amount of pain he is in and the way the pain is affecting him. I think that pain is one of those things where the sufferer really does have to be firm in explaining how bad it is. Poor man, and poor you. I hope that things improve very soon.
GOod luck tomorrow.
Thank you Alison and Carole, yes I will be going with him so if he down plays anything I can pipe up!!!
Roll on tomorrow!! It did mean a cheeky day off work for me as I have to take him!
Hi Just wanted to say I hope the appointment goes well. Might it be worth asking for an MRI to check for sciatica / discs / lesions etc? Some hospital departments are very quick to pass the buck and to me his pain does sound like sciatica - a close frirnd has it with similar psin levels. Fingers crossed for tomorrow. xx
Thank you for your replies.
Well we went and met this new neuro yesterday, he was very nice. We were in with him for nearly 2 hours!!! Poor people waiting behind us to see him!
He did all the normal checks, he handed me the perscription for steroids and then at the last minute took it back. Urine tests showed red and white cells so that has been sent to the lab. he also took bloods. Depending on the results of that he will then give him the steroids (he is worried joe may have an infection that has kicked this all off). He is booking him in for an MRI early next week, spine and head which will be good as Joe hasnt had an MRI for donkeys - and as the spinal clinic requested one also it will be examined by them as well as neuro. Joe had absolutely no reflex reactions on his right hand side - not really sure what that means…
But in short, he is still in absolute agony. Its horrible being helpless to help the people you love! Neuro said increase gabapentin and the carbamazepine one and he will phone when he has an appt for MRI…time will tell I guess!
Needless to say, I am opting out and sleeping in the spare room until further notice (that will last all of one night as I bet I get too cold without him!)
Thanks again guys x
I hope that helps - and it should, with a bit of luck. I think they give gabapentin for intractable sciatica as well, so more of it has a good chance of helping, regardless of whether it is sciatica or MS pain. And carbamazapine has really helped me wiht MS pain in the past, not to mention knocking me out sideways, which is exactly what you need when sleep is hard to come by.
Fingers crossed for better times soon.