What was the point?

Everything is behind time today, as I have at last been to see the Pain Clinic. I have always refused to go but then thing got bad and the MS Nurse convinced me that they would be able to help me. I really wish I had stuck to what I had been doing for years, refusing. Already I know you all have realised that they can do nothing to help me, yet another door has slammed shut on my first attempt to go through it. I sat with the doctor for about half an hour I started at my feet moving upwards, at each step he wrote it down and nodded. I went over the bowel problems and I listed it all step by step, the nods continues along with the odd question about the words I chose to describe things, eventually I had reached the last section and I waited as he for the first time looked at my list of meds that I am on.

We had a discussion about how well each worked, he was concerned by the level of the MST I am on as it is close to the max anyone would be happy for me to be on. Again we went over the problems that as time goes on I will need higher and higher doses, eventually this would be a major issue. I knew all that but there is no other option, it is what lies ahead and neither him nor I can change that. Then at last we got to the point the whole thing was about, what they could do to help me. All he could suggest was that we changed two of them for two other drugs. The drugs he said that were available might not work any better than those I am already on, there were no guarantees but for some they give a little higher pain control. The change over would take a few weeks and making the change would make me a lot worse for the first few weeks and at the end, well who knows, better, the same or worse. Next he told me about two other drugs that I have not tried that might have some positive effects, both are cannabis based and one rather hard to get approved, but he had little faith in either of them for those in my situation. He had prescribed them to a few of his patients but none had found them helpful in any way. I didn’t ask at the time but I should of, if they didn’t work, why tell me about them.

He had through out been trying to tell me that I would be better off seeing my Neuro, I told him that I hadn’t see them for years at which he was shocked. I went over how I used to see them every year, but when I became housebound I saw my Nuero who sent to see rehab and a physio. both were totally direct in that they couldn’t help me, there was nothing more available. I never heard from my Nuero again, that was 5 years ago and not a letter nothing. Not only did it feel as though I was abandon, I thought that it was because they could do no more. He checked my on line records and was surprised to see there had been no follow up, he was sure it was an accident. Accident or not, if they can do nothing and they want me there just to nod there heads and say we will see you in a year, what is the point.

I asked him directly if he was me, would he go through the medicine change over and try the other meds on top, he said no. As I feared here is yet another Doctor to add to we can’t do anything list and another letter onto my file saying just that and that he isn’t going to see me again, as there was nothing he could offer me. So I am now home again, exhausted and wishing that I had stuck to my first reaction to the Pain Clinic idea and not wasted my time morning having to go up and down in that horrid stair climber, being dragged around backwards in a wheelchair and draining my days energy for nothing. I wish I could give you all a more positive account of my experience, but I can’t. Adam has returned to work and once I have this posted here and on twitter I am going to my bed, I need to sleep this off and start on a brighter mood later.

3 thoughts on “What was the point?

  1. That is so disappointing for you to be told what you had feared all along. You may feel now that you shouldn’t have wasted your time, but you probably needed to go so you could be sure that there are not any new drugs or therapies you are missing out on. Now you know that you have done that, you can get back into your daily routine.

    I am seeing a specialist in the next couple of weeks and like you, I think he will probably not find anything that he can treat. But I think I should go just to be sure.

    I hope the by the time you read this you will have had a rest and may feel different. 😀 xxx


  2. I am so sorry to hear that once again you have been let down it is really soul destroying to hear how you have been treated. I know that going to see my neuro is a waste of time most of the time because of the usual well see you in a year attitude but maybe it is just a matter of time until they manage to find something that can help us all.


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