Hi.I have finally had my appointment at the Manchester Royal with one of the female consultants,and I am left with very mixed feelings. Some of hope,'desperate hope',and some of the usual disappointment that I have experienced over the years at other hospital consultant appointments.
It started very well, where the consultant actually had time to read my GP letter and was pleased to receive the bits of information I had collected from previous other specialist appointments. She asked particular questions and proceeded to make notes, although she didn't want me to expand on it and discuss other symptoms(and especially not while she typed, so I respectfully sat waiting) but it all seemed very promising.
In hindsight, I wish I had answered the crucial question differently; "if you could pick two symptoms as being the worst,which would they be?" I said "fatigue and pain".She asked "where",I explained about my feet, but I wish I had said, it depends on the day.But because of late, the feet pain and sensations I feel has been a constant, so my focus has been on that area. After typing,she asked to examine me (I was by now seriously flagging) she saw my left foot is barely able to flex or point and acknowledged it was weaker. She also asked to look at how I stand and saw the rashes on my legs, which at that moment was the red dots that fade and reappear on my calves, and she remarked it wasn't significant enough (a phrase mentioned throughout when I described or pointed out a symptom) and that it looked like 'a shaving rash'.As I'd previously shown I'd lost my leg hair (apparently an insignificant sign), she should have twigged that shaving them is not necessary.When I returned from the examination bed and sat back down, (I can't now remember all now,I was seriously fatigued mentally aswel as physically with almost an hour's consultation) she began to summarise and said all of my symptoms could be related to my fibro condition (I was feeling the familiar hopelessness) She suggested various pain clinic and physiotherapy, saying it may or may not all be to do with fibro, but she was mostly seeming to suggest she thought it was,and that as my pain was constant (meaning the feet/ankle pain I'd spoke of) it didn't suggest anything vascular as that would be leg pain which eases with rest. I found the energy to say my leg pain was like that, at which point she displayed some anger when telling me I'd told her my pain was there all the time. So I had to find the reserve of energy to tell her when I stand or walk I have 'lead legs' and pain,and I hope I got it across well enough, because that has been a debilitating condition of mine for many years and no one has understood or cared to understand why.I had earlier given her a list of my symptoms with the heavy,lead-leg pain being on it.
She studied me for a moment (it felt a little like a Mexican stand off) and then my hope returned when she thought about what tests to do and arranged them for me with a follow up clinic appointment. I wanted to know what medication I could have to help me at this time, but she couldn't come up with anything other than to increase what I'm already on.
I've had numerous bloods and await an EVP test. I quickly received another clinic appointment.. for six months time!
So I am left with mixed feelings about the whole event. Nothing has changed. I am still in constant agony, everyday is a challenge and I am unable to lead any sort of normal life.I tried not to have high expectations for the appointment, but I had hoped I would get some kind of help a little more immediately once my deteriorating state was seen by a Professional. Ahh well on it goes..
Best wishes x