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Any advice appreciated-In diagnosis process

Hi, I’ve been reading your forum over the last week after some new symptoms I have developed. My medical history is long but briefly I became ill in 2005 whilst working in my first job out of university. It was incredibly fatigued, had persistent headaches, became easily confused and disoriented and had muscle weakness and pain. I became house bound for a year. My GP diagnosed ME and refered me to a specialist group for CBT. Slowly I built up my activity and just about managed to get on with my life though work was not possible anymore. I tried to study to be a teacher but the fatugue and brain function made it impossible. Over the years my symptoms have increased, I suffer vertigo in bright places such as supermarkets. I stumble frequently. My cognitive abilities feel like they are getting slower. I’ve developed on and off pain, tingling and numbness in both arms. A cold patch on my left thigh. Numbness and tingling in my toes. Feet always cold. Repeated bouts of costocondritus, chest and rib pain so bad I feel like I can’t breath, wearing a bra is too painful. I’ve had investigations for lower back and hip pain, diagnosed with sacroilliitus. Diagnosed with fibromyalgia. The list goes on really. My gp refered me to a neurologist and I had my initial assessment on Friday. Stupidly I went alone and feel like I forgot so much. He said he thinks I have naturopathy in the tops of my feet and the cold patch could be a trapped nerve from wearing skinny jeans. He seemed happy with the rest of the examination. I was surprised he only asked me to walk 4 steps and my balance when walking and turning can be pretty bad but not in 4 steps. He sent me for a series of blood tests and will report back but seemed to be agreeing with the ME diagnosis. I’m just concerned that the symptoms I’ve lived with for years have changed in the last three months considerably and many are linked to MS. I would have liked an MRI. Has anyone had that after blood tests? He didn’t mention one at all. I think that was because he was happy with my examination. I felt feeling like the symptoms had been ignored. Has anyone else had a similar experience with ME or fibromyalgia? I feel like I’m going mad. I’ve been working for the last 4 years with a lot of time off ill but this year I’ve has 7 weeks off over two separate bouts of symptoms and I feel like things are getting worse. I’m just worried really.

I’m afraid I have no suggestions to offer, but I am sorry that you are having such a worrying time and that you feel that your symptoms were brushed off with too little consideration.

Time will tell, of course, but that isn’t much help to you right now. :frowning:

Alison

Thank you Alison. I’m just struggling with all these new symptoms atm.

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It certainly does seem that the neurologist didn’t take much care of you at your appointment. It’s too often the case that a person goes alone to an appointment and is a bit underprepared so leaves the appointment generally shocked and surprised that the appointment over which they had high expectations has not been helpful.

You’ve been sent for blood tests and told the neurologist will report back, does this mean that effectively he has discharged you unless anything startling comes from the bloods? Or do you have a repeat appointment booked?

If this was a one off appointment, I wonder if there is any value in writing to him to ask for more help. You seem to be a person who can express yourself well when given the time to organise your thoughts, it might be easier to do so in writing than at your recent appointment. You could briefly detail the symptoms you’ve had over the last couple of years (rather than going too far back in time, because if what you want from him is a referral for an MRI, it’s the recent time that will be shown in the images). In your letter ask if it’s possible to be referred for an MRI as you believe there is a neurological cause to your symptoms.

Obviously, you may be expecting the blood test results to be given in another appointment. If that is the case, you should do two things, the first is to prepare for the appointment by writing down all your symptoms and questions. The second is (as you already know) to arrange for someone to come with you to the appointment.

Best of luck.

Sue

Thank you Ssssue for your response. I have in fact done exactly as you suggested. I contacted his secretary and she has passed mu letter on to him. I outlined the new symptoms and made it clear that after having the symptoms of chronic fatigue for 13 years I know that these new symptoms are different. He said he expects the blood to be fine and will write to me. I forget to say he’s going to suggest a different type of medication to my gp and wants me to try that and see him again in three months to see if they have helped. It was definatly a mistake going alone. Though I was in there for about 45 it was all very fast. I did actually get my phone out with notes to show him then totally forgot with it all being so overwhelming.