My wife has just been diagnosed with MS in her 60’s - probably Relapse and Remitting. One of the tests used was a lumbar puncture which did not go well. The first attempt hit a nerve and she involuntarily kicked the nurse. This was over 7 weeks ago and since then she has had a heavy feeling/pain in her lower back and tingly legs. We cannot get any clear advice on whether this will go away, some suggestion that it should go away in 6 weeks to 3 months. She has been prescribed Ametryptaline to mitigate the pain but is unhappy with the side effects of doziness. Following the diagnosis a week ago we were told that she should hear soon from an MS nurse but have not heard yet. The consultant has said he will require another MRI in 6 months to get a clearer idea of whether there is any progression. My wife is worried that she could have suffered permanent nerve damage from the lumbar puncture or that it could have triggered an MS relapse. She feels isolated and wonders whether she should be receiving seroid treatment to mitigate the effects. Any advice on how to proceed would be welcome.
There are a range of points in your post. I’ll try to answer a few of them if possible.
It seems that your wife had a pretty nasty experience with her LP. As far as I know, in general there don’t tend to be long lasting effects from a lumbar puncture, so it seems waiting it out for a couple of months is going to be the only possible thing you/she can do. I don’t believe damage from the LP could cause a relapse (but I could be wrong!).
Relapses for the RRMS variety are caused by inflammation. Either some external virus could cause such inflammation, or it could just happen all on its own. Inflammation causes cells in your immune system to start fighting and damaging the myelin (the protective coating for the nerves in the CNS). Relapses can take months to recover from - and it is possible that a relapse started simultaneously with the LP, maybe caused by the emotional impact (it’s impossible to work out exactly what causes every relapse).
With regard to Amitriptyline, it can make you dozy if you take it during the day, or too late in the evening. The general advice is to take it in the evening, but by 7pm. That way, she’ll have the benefits from the drug overnight, but not have a ‘hangover’ type effect the next day. There may be a different neuropathic pain drug which could help through the day, has she asked for anything different? For example Pregabalin? She could ask her GP, or phone the neurologists secretary and ask if a message could be passed on to him/her regarding the pain.
High dose steroids are given to people in a relapse to damp down the inflammatory activity which is causing the relapse symptoms. They aren’t always reliable, and don’t always work, although they can at times be miracle workers. But their best reaction is when they are taken very early in the relapse. Even if what your wife is experiencing is a relapse, I wouldn’t think this far in that steroids would work terribly well. And assuming it is actually a side effect from the LP, steroids will not help.
Your MS nurse, if s/he’s anything like mine has several hundred patients / clients in her workload. That doesn’t mean it’ll take forever for him/her to get in touch, but give it another week or so. If you do happen to speak to your neurologists secretary, you could ask for the MS nurses contact details so you could initiate contact.
I completely understand the feeling of isolation and being left adrift after the diagnosis. It’s not easy to get your head around an MS diagnosis. People typically go through a whole raft of emotions, from anger, to upset and a feeling of ‘why me’, on to a fear of what the future holds. It is one of the very worst things about MS, not knowing what will happen in the future and being frightened for oneself and our family too.
Do keep talking to us on the forum. Remember that we’re not experts - we are only experienced though having MS ourselves, but we do tend to understand the emotional impact of the diagnosis. For information on MS, relapses, drug treatments and other aspects of the disease, use this site (see the tab marked About MS), or the MS Trust website. Both give good and reliable information.
Best of luck.
Thanks very much Sue - really helpful.