Well I have just got back from appt with Neurologist and don’t know what to think! Every symptom I told him about he put down to Fibro, CFS or ME. He obviously hadn’t done his homework as I had to remind him I had seen him 3 years ago, and only then did he read back on notes to previous consultations. He has arranged for more blood tests and also MRI of brain and lower spine as I have a lot of pain there. Appointment seemed very rushed as he was running late! Only time will tell, I am seeing a rheumatologist tomorrow morning which I was going to cancel but quite glad I haven’t. Watch this space and in the mean time just live each day as it comes. Jane xxx
So sorry you had that sort of experience. I know full well what that is like. At least he is getting the tests done. Hopefully something will show up and you’ll get some answers
Thanks Sharon, I came away feeling like a hypocondriac! I suppose only time will tell xxx
Hmmm how odd but at least you’re getting sent for further tests and not fobbed off which is a bonus. Hope everything goes well A xx
I’m starting to wonder if it’s a test they do. Make you feel like a hypochondriac and if you keep coming back after the embarrasment of that, then they’ll accept something is wrong.
I think it’s the nature of our symptoms that we start to doubt ourselves as to whether it is real or in our heads. At least on here you get some common sense…well most of the time
I’m convinced you’re right with that one. The times you say symptoms and you’re made to feel crackers then come on here and find loads of people have that symptom, maybe its what they learn day 1 lol Axx
Perhaps your right Sharon, never thought of it like that before. Like Arwen said, so many people on here, some who have been dx have same symptoms. It does make you doubt everything consultant says and how they make you feel. Jane xxx
Just a thought but maybe the neuro consultants should join this site and spend an hour everyday reading these posts and then they will see that all these symptoms that they fob off are actually very common among us folk!
Its an idea but if nothing else maybe it would improve their bedside manners…not complaining about mine coz he’s a real gem.
(hahaha this is just incase he is one of the few that does actually read this website!) LOL
What a fab idea Lea although I do wonder if any nose at these you know A
Cassies Mum - I’m so sorry you didn’t have the positive and supportive experience you deserved. I have battled with the exact same reaction by so many doctors for so many years. All I can say is NEVER give up and just have faith that one day someone will take you seriously.
The Neuro I saw last week seemed quite horrified that I had been ill for over 20 years and was no further forward in finding any real answers. He also seemed quite shocked that I had not been offered any support or treatment for any of my symptoms and promised me that he was on the case and that he would get me sorted. This is after over 20 years of being fobbed off with a vague diagnosis of ME/CFS/Fibro.
I think I have finally struck lucky this time, although he has also referred me to another Neuro who specialises in my type of symptoms…so am now keeping everything crossed that this one will be as nice as the first one. The Nurse in the clinic did say he was, so I just hope I get him on a good day.
It really shouldn’t be like this. We should know that we are going to be taken seriously and appropriate action taken. I suppose, in a warped way, I am lucky as I have a major balance issue that cannot be ignored as it effects walking, standing etc, so they can’t just fob me off and say nothing’s wrong. Mind you, my GP seems to be able to do this frequently with consummate ease!!
Cassies Mum - I really hope you get some support and answers soon xx
Thanks Purpledot, not going to give up. I saw a rheumatologist this morning who was really lovely,had all the time in the world for me and let me talk about symptoms had for past 10 years. He examined me and said he is sure it is more neurological than rheumatological and will be interested in seeing what MRI results say. Between them both I have been drained of blood today! Lol. Will have follow up appointment at rheumatology in 2-3 months. He doesn’t think it can be classed as Fibro (yet) but could be ME if nothing else shows up on MRI. He did say he would liaise with neurologist and between them they would try and ‘sort me out’. Fingers crossed. Lea, that’s a great idea, makes you wonder if they do! Lol Jane xxx
Hi, I have been doing the rounds since 1999 and up to yesterday, have seen a total of 15 different neuros!
But I am
lucky (for want of a better word) that none of them ever suggested my problems were
all in my head…even after 4 MRIs, 2 LPs, 2 EMGs, a VEP, and gallons of blood tests all came back normal, despite rapid progression of typical PPMS symptoms.
I spent some years in limbo and some with a diagnosis of PPMS and now wear a label which reads;
spastic paraparesis/cause unknown…it could be hereditary, but we know of no other family members with it.
The best advice I can offer other limbo-landers is this;
Hang on in there, although I know it can be so diffcult at times.
Try not to go into a medical appointment in tears…they could write you off as a neurotic…got this advice early on in my journey, from someone with personal experience of that.
There is a possiblity that you may never find out what is causing your problems.
If your mobility wanes and you are looking at the possibility of using walking sticks, walkers, or wheelchairs…please do not see this is the end of your life…it isnt, although it can sometimes feel like it is. A life on wheels, sticks, crutches or whatever, can still be a very good life.
I`ve been there, done that and got the damned t shirt!
So glad you have had a more positive appointment today, Cassie’s Mum. At least the Rheumy has promised to get you sorted, which is a HUGE step forward.’
I know what you mean about the amount of blood they take…I asked if I qualified for a cup of tea and a biscuit after my last lot!!!
Poll - wise words, as ever