Some of you will know I have been disabled now for just over 5 years. It hasn’t been jolly. Well I’ve seen various neurologists who have all been pretty dismissive and uninterested-except one who was very thorough but only stayed six months so I only saw him once.
I had a full MRI 5 years ago when this all happened. Doctors have told me the results were “inconclusive”, “normal”, “showed wear and tear” and one doctor; the thorough one; said I had damage to the spine in 2 places.
I have tried to get on with my life. I do not believe something like this should let me grind to a halt-although the temptation has been strong at times! Meanwhile the doctors continued to be dismissive and unhelpful.
Finally I had an appointment at the hospital on Monday. The reg was off with us from the moment we entered the room. I had my questions ready and tried to ask them. She wouldn’t answer them. Alistair repeated the questions and she wouldn’t answer him either. Then she said I needed to see a psychiatrist.
Fine-if that will help. However she was unsure about this and has decided I need to see the consultant neuro instead-in 6mths of course. No hurry. So I should see him Dec and he will decide if I need a psychi appt or not. She was very reluctant to do anything about my pain and I had to push very hard indeed for her to agree to change meds to Amytripylyne-and then she wouldn’t write a prescription but insisted I went to the GP for it!
So we were dismissed. I was utterly gutted and really quite angry. How much longer?
I’ve been online a lot since Monday trying to get as much information as I can. My illness behaves very much like MS but it also matches -much more closely actually- fybromyalgia. Now if it IS FM then it is treatable-not curable it seems, but at least I could find ways of managing the pain and fatigue better than at the moment. So I am reading everything I can find on that as well as MS and seeing if there is anything else out there that covers these symptoms.
I also made an appointment with a chiropractor and saw him this morning. First consultation was free. The whole set up is so different to the NHS. The receptionist was polite and friendly. They are keen to ensure you are given as much information as possible. The chiropractor himself greeted me properly and then took my history. He LISTENED to me! He actually understood what I was saying and when I asked questions he ANSWERED them clearly! Can I tell you how good that is!? One of the things I found reassuring was he took particular interest in the big fall I had 14 yrs ago when I was pregnant with Iona. I have had a “bad back” ever since and the main point of pain these days is the same place-only I can’t walk properly now. The neuro dismissed the fall as irrelevant but he asked a few questions about it.
Finally I was poked and prodded as you would expect. OW-but I think it could be worth it. He wants to see the MRI report from 5 years ago. His initial thoughts on what has put me in wheelchair for 5 yrs…? A TRAPPED NERVE!
If he is right-and he isn’t at all sure at this point-but if he is I am looking at getting better over time and with his treatment! I SOOOO want him to be right. But I would also be very angry indeed with the medics who have never noticed something so basic and have simply left me like this.
I really, really, really want this to be as stupid as a trapped nerve. But even if in the end it is something like FM then at least there is a treatment and a way to have so much less pain and fatigue. Either way I win.
Pray for me.