For the last 8 years I have been living with ppms. Based in the UK it is wonderful that my medical care costs me nothing. Obviously something disappears from my wage packet, but even if I was not working I would still get the same level of care.
Over the last 8 years my health deteriorated badly, and really though I got lots of neuropathic and other pain care - it just was not tackling my muscle spasms. Everytime I took an anti spasmodic, I became so constipated that I would end up with impaction problems. I have slowly become sicker and sicker with tendonitis and bursitis or both in every possible joint in my body.
I work a very high powered & very influential legal job in politics (though not a politician - thank heavens) with lots of international travel which I love, have a young family (well all 4 are now young teenagers) who I love, and have a wife who I love, and do vast amounts of voluntary but very effective human rights work at the level of the UN/Gouncil of Europe. Or rather I did love my job.
But the last 2 to 3 years have seen my dignity stripped from me, as mobility became limited, I couldn't pee or pass faeces without help, my fatigue was so bad I was losing 14 hours a day, I could not sleep in a bed without someone helping me to get out of it and the last year I have been suicidal. My marriage of 30+ years nearly collapsed, and my children were getting very stressed out. We did everything we could to keep this altogether, including family therapy with an MS therapist and a family therapist - that cost a fortune, but it did somewhat help us keep it together and to keep me working - but it really wasn't working well and the solution seemed to be to vanish by killing myself.
My wife (a nurse and academic) and I did a lot of reading, and 6 months ago I saw my doctor and asked to try some new meds we thought were worth trying. As usual she said "there is no cure for ppms". I am not stupied I know that, but if she said once more "people in your position take early retirement" I would have killed her. I came from a difficult & very poor background where education was not valued, and worked on building sites for years as a casual labourer, before I went back to eveing classes when I was 30.
I have done well, and I am a full professor and a lawyer. Governments and major international bodies listen to me. I reckon through my work the quality of life for hundreds of thousands of people,worldwide, has been improved. And there is still a lot more to be done. but I could not get my doctor to listen to me. All she could see was a chronic patient who should stop working. I felt totally desperate and have really felt for all those people who are less able and less articulate.
The next appointment was 8 weeks ago, my wife came with me. She explained that I was not going to take early retirement it would destroy me, and I would be so dissatisfied at this stage of my work, I would kill myself - or she would kill me becuase our family life would be so badly damaged. This time the consultant doctor listened and within 15 minutes provided a script for the anti-spasmodic Dantrium and a scipt for Modafinel (an anti-narcolepsy medication). We had no real idea whether it would work, but anything was worth the try.


Stephen, I am so glad to read that you did not give up that you kept on going on. That is what it is all about. This illness that we all share is a theif, and it will take, take, and take some more! But we have to figure out a way to take from it, and you did. You have a great support system surrounding you, use it. I am so happy things are working out for you, just keep on keeping on, hugs those kids, and kiss the wife. Be happy, you deserve it, and thank you for sharing, it gives all of us a boost!
Sherry/smomdukes